Jan 28 2010
Reflexive doubt
Those of us who study, practice and write about medicine cherish the hope that explaining the science behind medicine (or the lack of science behind “alternative” treatments) will promote a better understanding of medicine. Certainly, I would not bother to write about medical topics if I did not believe that promoting science based medicine would lead to increased understanding of medical recommendations and decreased gullibility in regard to “alternative” remedies. Nonetheless, lack of scientific knowledge is not the only reason for the current popularity of “alternative health. Indeed, many advocates and purveyors of “alternative” health are impervious to the scientific evidence. What else might be going on?
Belief in “alternative” medicine is a complex social phenomenon. Like any complex social phenomenon, the explanation cannot be reduced to a simple answer. But I would argue that there is an important philosophical component, developed by and promoted by advocates of “alternative” health. That philosophical component is the rise of reflexive doubt. Simply put, among a significant segment of society, it has become a badge of honor to question authority.
As an obstetrician, I am most familiar with its expression among childbirth activists. They recognize that many people hold the common sense belief that modern obstetrical practice has made birth safer, and have worked ceaseless at undermining this common sense view. Craig Thompson, a professor of marketing, has examines this tactic in his paper What Happens to Health Risk Perceptions When Consumers Really Do Question Authority?:
…[U]sing the natural childbirth community as a context … helps us understand how groups of people come to deeply believe in anti-establishment risk norms… Natural childbirth activists believe that low-tech midwifery … provides the best labor outcomes, except for in a small percentage of high risk cases. They also believe that the medical practices of childbirth pose a host of unnecessary and avoidable risks…
…Childbirth reformers interpret … innovations … as unnecessary intrusions whose primary function was enabling physicians to display technical skill…
… During the past 50 yr., many obstetric interventions that were once deemed to enhance the safety of birth or to improve postpartum outcomes—shaving of the women’s pubic region; mandatory intravenous drips … enemas …have all been discarded as ineffective, unnecessary, and in some cases, potentially harmful. The natural childbirth community invokes this historical legacy to argue that many contemporary obstetric interventions are likely to meet a similar fate.
In other words, the apparent success of modern obstetrics is illusory. Innovations were unneeded and developed simply to enrich physicians. Moreover, obstetrics has been mistaken in the past so no one should trust it in the present. Therefore, questioning the claims of physicians, and reflexively doubting explanations is not merely necessary, but is the mark of and “educated” and “empowered” consumer of health care.
Such tactics may have originated with the “natural” childbirth movement, but they have arguably reached their apogee with the vaccine rejectionists. That’s why millions of parents consider take former Playboy Playmate Jenny McCarthy a reliable source on vaccination. No one argues that she has any formal training in immunology or even that she understands the science behind vaccination. That’s not necessary. She is admired by a community that has come to believe that reflexive doubt is a sign of sophistication and education.
As Hobson-West explains in Trusting blindly can be the biggest risk of all’: organised resistance to childhood vaccination in the UK, vaccine rejectionists generally ignore the actual scientific data, focusing instead on whether parents agree with health professionals or refuse to trust them. Agreement with doctors is viewed as a negative and refusal to trust is viewed as a positive cultural attribute:
Clear dichotomies are constructed between blind faith and active resistance and uncritical following and critical thinking. Non-vaccinators or those who question aspects of vaccination policy are not described in terms of class, gender, location or politics, but are ‘free thinkers’ who have escaped from the disempowerment that is seen to characterise vaccination…
This characterization of vaccine rejectionists can be unpacked even further; not surprisingly, vaccine rejectionists are portrayed as laudatory and other parents are denigrated.
… instead of good and bad parent categories being a function of compliance or non-compliance with vaccination advice … the good parent becomes one who spends the time to become informed and educated about vaccination…
… [vaccine rejectionists] construct trust in others as passive and the easy option. Rather than trust in experts, the alternative scenario is of a parent who becomes the expert themselves, through a difficult process of personal education and empowerment…
The ultimate goal is to become “empowered”:
Finally, the moral imperative to become informed is part of a broader shift, evident in the new public health, for which some kind of empowerment, personal responsibility and participation are expressed in highly positive terms.
So vaccine rejectionism, like most forms of “alternative” health is about the believers and how they would like to see themselves, not about vaccines and not about children. In the socially constructed world of vaccine rejectionists, risks can never be quantified and are always “unknown”. Parents are divided into those (inferior) people who are passive and blindly trust authority figures and (superior) rejectionists who are “educated” and “empowered” by taking “personal responsibility”.
As Prof. Thompson notes in regard to believers in “natural” childbirth:
Importantly, their beliefs are far more than an abstract system of thoughts. The natural childbirth model shapes childbirth choices by being accepted as a structure of feeling…
…The risks singled out by the natural birth model express cultural anxieties over the unintended and dehumanizing consequences of technology; the loss of individual independence through the workings of complex ‘expert’ systems; and a political project of supporting midwifery over the socially-accepted knowledge of the medical establishment.
Similarly, the purported “risks” of vaccination express cultural anxieties over unintended or dehumanizing consequences of technology, expert systems, and supporting self “education” over the accepted knowledge of the medical community.
In counseling patients about the claims and remedies of “alternative” health, we may need to do more than simply explain the underlying science (or lack thereof). We may need to address the philosophical beliefs about the value of reflexive doubt. Reflexive doubt is not laudatory in and of itself and it certainly is not a sign of being “educated.” It is just a mindless rejection of authority, with potentially devastating consequences.
485 Responses to “Reflexive doubt”
On an anecdotal level, I have to agree. I have a friend who, when she moved to a new city, started looking for an “alternative” dentist. Not sure what this even meant, I asked her about it. She replied that she had always been against authority, and felt that she didn’t want to just go with the herd. “Alternative” for her isn’t a choice that’s made on a case-by-case basis (she didn’t even know what an alternative dentist would do differently from a conventional dentist). It’s a matter of identity. And that is a much harder nut to crack, for skeptics trying to raise people’s level of awareness about the evidence.
On the other hand, “reflexive doubt”, when backed up by a commitment to examine and accept the evidence, is a central characteristic of science and skepticism. When we come across a claim for which we have no evidence one way or the other, our proper response is to withhold judgment – to doubt the claim.
And, as with any general human tendency, we should be aware that the skeptical community is prone to the same mode of thinking. Not all of us examine claims like UFOs or CAM in detail. Instead, bolstered by the consensus of our community, we reflexively dismiss any claim that falls under the general heading of “alternative” or “paranormal”. Not as in withholding our judgment, but as in labelling new claims false. In most cases, I think this is okay: our dismissal is backed up by actual research done by others in the community. But, on an individual, sociological level, what we are doing is not vastly unlike what the “alternative” crowd is doing.
(Let me reiterate: I am a skeptic, and I think we are justified in rejecting most of the claims of paranormalists and alternative health purveyors. I’m just saying that, psychologically, we are vulnerable to the same gotchas. Constant vigilance!)
Why does the word “authority” get used so often in these discussions? That attitude of superiority starts the typical doctor-patient relationship off poorly.
A patient who has spent decades living in her body knows things about her body that a doctor cannot discover in the typical 10-minute visit, especially when seven of those minutes are spent typing prescriptions.
Consider the fact that patients are wanting help from doctors, or they wouldn’t even go to doctors in the first place.
The problem often begins not with the patient, but with the doctor. who barely pays any attention to the patient before prescribing the standard one-size-fits-all plan: “Take a daily aspirin, a daily beta blocker, a daily metformin, a daily diuretic, a daily statin, and come see me again in six months for your next 10-minute visit.”
Give me a break! Why is it so hard to understand why patients don’t respect doctors who don’t listen to the patients?
Dear “Doctor Authority” — please kiss my a**.
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Oddly, this sounds nothing like my doctor.
Fact finding decisions on Wakefield, Walker-Smith and Murch 2 pm GMT January 28th.
jimpurdy,
“Why does the word “authority” get used so often in these discussions? That attitude of superiority starts the typical doctor-patient relationship off poorly.”
The doctor does have superior knowledge to the patient. Inherently the patient realises this, otherwise why is he going to the doctor in the first place.
“A patient who has spent decades living in her body knows things about her body that a doctor cannot discover in the typical 10-minute visit, especially when seven of those minutes are spent typing prescriptions.”
That sounds like a 3 minute consult (7 minutes spent typing the prescription???). That would be for a relatively minor problem such as a cold. I don’t think the doctor would not need to know what it is like to have spent decades living in your body to solve that little problem.
“Consider the fact that patients are wanting help from doctors, or they wouldn’t even go to doctors in the first place.”
Yes, to use their superior knowledge to diagnose a problem they have do not have the knowledge to solve for themselves. Life’s a bitch aint it?
“Give me a break! Why is it so hard to understand why patients don’t respect doctors who don’t listen to the patients?”
Sounds to me like you need to change your doctor.
“Dear “Doctor Authority” — please kiss my a**.”
QED!
“On the other hand, “reflexive doubt”, when backed up by a commitment to examine and accept the evidence, is a central characteristic of science and skepticism.”
I used the term reflexive doubt because one of my citations used it, but “questioning authority” is probably more accurate.
In science, reflexive doubt has nothing to do with authority. It’s about doubting claims until you see the evidence supporting them (and sometimes even after). In “alternative” health, it has nothing to do with the evidence at all. For example, vaccine rejectionists tend to be evidence resistant; it makes absolutely no difference what the evidence shows. Instead they claim virtue and “education” in simply questioning authority.
Good post, Amy. The CAM types like this Purdy guy fit your description to a T. I also have never been treated by a doctor described by Purdy. My doctors listen to me and give me feedback. I ask further questions and we decide on a treatment plan. If drugs are involved, my doctor has to give me a clear reason why I need to take them or I don’t take them. It seems types like Purdy have a hard time not caving in in front of authority so instead they put authority in the bad bag and badmouth all forms of it and avoid it because they do not know how stand up for themselves. How very stupid, and they are only hurting themselves.
I like the term “reflexive doubt” myself. It designates the process as not having any thought behind it. It’s also common to call someone with that tendency a “contrarian”.
It is a pervasive thing, not just in medicine and science. It can be seen more in poliitics for example.
If you really want to see it in action, make some substantive criticisms of a friend’s favorite sports team!
IVs aren’t mandatory anymore? Well, that’s good!
As in most things, there is a balance there. I’m the annoying type who has no qualms about asking for a second opinion.
I just came across this awesome correspondence from Mark Twain to a patent medicine salesman:
http://www.lettersofnote.com/2010/01/youre-idiot-of-33rd-degree.html
What irony that so much of today’s ‘alternative medicine’ is the same simple hucksterism as the classic elixer hawker. Except now they’ve organized, infiltrated scientific establishments, and created a religious following of people who trully believe the stuff works and will sell it for them.
“I’m the annoying type who has no qualms about asking for a second opinion.”
That’s a good idea and it does not represent reflexive doubt. Questioning the actual recommendation and soliciting other recommendations for comparison is part of informed decision making. In reflexive doubt, the recommendation is rejected simply because it is made by an authority figure, and there is no effort made to determine whether the recommendation itself is valid.
A term I like better than reflexive is default. If your default is to do the opposite of what ever an authority says, you are not a skeptic, you are not questioning authority, you are a contrarian.
I think that is probably closer to the original motivation of many of the CAM followers, they want to do the opposite and then cherry pick evidence to support their contrarian position. The CAM practitioners may do that because SBM has a “lock” on all the good techniques, the CAM pratitioners need something different to hook their followers.
The ironic thing is that those interested in alternative medicine are in fact no more independently involved in making healthcare decisions than those who trust their doctor. The difference is that the CAM leaders don’t claim to be experts. Nonetheless, antivaxers take Jenny McCarthy’s every word as the truth and somehow believe that they came up with her talking points themselves.
I always get a kick out of the “I know my own body better than the doctor” notion. Everyone knows their body to some extent, but the reason you go to the doctor is because something is not quite right with your body. You go to see the one profession that specializes in knowing human anatomy.
How many people who “know their own body” actually have listened to their hearts with a stethoscope, hooked themselves up to an EKG, taken their own blood pressure, etc. And if they did those things, would they even know what signs and symptoms of disease to look for?
jimpurdy, it sounds like your doctor is just seeing you on a return visit. If you have no new symptoms and there is no reason to change your medications, then why would the doctor spend more than 10 minutes with you if 10 min is all he needs. The drugs you list are part of a pretty standard regime for anyone with heart disease, high blood pressure, and diabetes. However, it is hardly one size fits all. Doctors customize medications to fit each individual patient. The dose is calculated on an individual patient basis and there are many different brands under the beta blocker umbrella, each with their own benefits and side effect profiles.
“I always get a kick out of the “I know my own body better than the doctor” notion. Everyone knows their body to some extent, but the reason you go to the doctor is because something is not quite right with your body. You go to see the one profession that specializes in knowing human anatomy.”
There is a specific allure to the claim of “knowing” one’s own body. As Kaptchuk and Eisenberg point out in their paper The Persuasive Appeal of Alternative Medicine:
In other words, no particular knowledge is necessary to declare yourself an expert (on par with those whose expertise comes from knowledge of science and medicine) because you are an “expert in knowing your own body.”
Thanks, Dr. Tuteur. That is an interesting and compelling analysis for why people make such claims.
My personal experience with this matter involves my roommate. She is one of these deluded souls. Her big claim is that she never gets sick because she has a really strong immune system (I love when Bill Maher and people make this same claim). When her boyfriend pointed out that she was sick several times in college, she admitted she occasionally gets sick but defiantly responded that she only gets sick with a particular infection once, then her all powerful immune system overcomes it and she develops life long immunity to that pathogen.
I tried to explain to her that such a scenario probably isn’t possible and if it was, she’d be Wolverine. I don’t think she liked the idea of being implanted with a metal skeleton. Joking aside, I patiently explained to her that, as an example, there are hundreds of possible causes for the common cold. She maintained that she had only had one cold in her entire life and that she will never get it again.
I feel like hers is clearly a case of selective memory (same for Bill Maher), combined with this reflexive doubt (about germ theory and doctors in general). She often claims to be a “strong” woman, whatever that vague description implies, and I suspect that her warped perception of her own body’s capabilities is a part of that as well.
Dr T. read my mind – I was just thinking about the same topic this morning (without the OB references). The word that occurred to me was anti-establishment.
Zoe237 and daedalus2u beat me to one of my points. I have always thought of questioning authority as generally good. Sometimes there are unjust laws, mistakes made or you learn something.
Then again, I tend to be a contrarian, but I try to keep it under control. (just taking it one day at a time
I couldn’t agree more with Dr. T. that the problem is when it becomes thoughtless or someone takes an opposite stance and sticks to it automatically. To the effect of “It must be wrong because they said it.” A lot of the conspiracy theorists and cult followers seem to fall into this category. I can see Dr. T’s point about how that is at play in the CAM community.
I would not say that ALL the members of the anti-vax community are anti-establishment. I don’t mean to imply anyone said they are, just keyboard thinking.
From conversations and comments, I’d say some are Anti-SBM (generally the Big Pharma deal).
Some are libertarian/anti-government intervention. “How dare they MAKE us vaccinate. ”
A pretty big number are paranoid parents who generally trust SBM, but are alarmed by the controversy and are trying to hedge their bets just in case SBM made one of their occasional mistakes.
I’d say this last group is more motivated by the culture of alarm that we seem to have these days than anti-establishment views.
Questioning authority is always a good think, but this thing doesn’t like…well, authorities. What should be pointed out, that we should question that authority with critical thinking, rational and logical arguments, not just assume some conspiracy etc.
Well, I find myself in the position of being skeptical about following the herd when it comes to medical issues because I am an individual. I realize that there are times where cookie-cutter one-size-fits-all treatment covers me well, but I fear there may be times where I am seriously harmed if I don’t look out for my own individual needs for care. Malpractice happens, and medical personnel get slack when they churn so many patients through their standard procedures. I also perceive birth differently, because I don’t feel like it has to be a medical procedure for all women, as can be seen by the large number of women who can birth without problems. Girls should not be taught that birth is unbearably painful, negative, frightening, and dangerous, and one is lucky if they have a good birth. That was the attitude I had as a girl, and it was very far off my own birth experiences. I appreciate that modern medical care saves lives and don’t think that modern medicine is evil or useless, but there are other factors driving current medical practices that are not necessarily based on every individual getting the best treatment. Money is to be made in medicine, and this has a negative impact on the care that is provided.
Look at these machines that two companies would love to see attached to every woman and baby in every labour and delivery ward in the US and worldwide. They are called LabourPro (http://www.trigmed.com/index.php?page=labor-about) and BirthTrack (http://www.birthtrack.com/products/technology.html). These are machines with monitors that are attached to the mother’s cervix and screwed into the baby’s scalp to measure cervical dilation and head station etc. Is this really making birth better and safer for women, or is it just a great money-maker for the companies and saves hospital money on resources. What kind of standards do these machines set, and how will it affect the way women birth now and are expected to birth in the future? Can you see the problems with this kind of technology?
I believe that you should work WITH your doctors, but respect that they have more knowledge than you in regard to certain things. As a midwife, I am quite comfortable with dealing with my current peri-menopausal symptoms by using only certain medications as needed. My Gyn and I discussed several different treatment options, he gave me samples or prescriptions and allowed me to make the decision on what to try /not to try.
Working with my orthopedist is different. My knowledge of musculoskeletal issues (especially shoulders) is very basic. We worked out a treatment plan which we have been implementing over the pasy many months. He has told me frankly that I won’t be “cured” without surgery probably (in rare cases, my type of injury, being small, may heal on its own). However, we have worked on alternatives (NSAIDS, therapy, exercises, injected steroids) and, as long as I am stable and willing to live with the occasionally severe pain, he leaves the decision up to me.
I respect their knowledge where it is greater than mine. I do know my body and my tolerance for menopausal sypmtoms and pain better than they do. So, we work together. However, if either of them said I needed a specific treatment, (like the shoulder surgery) because the risk of not having it is greater than the risk of doing the surgery, then I would accept their expertise.
To be entirely fair and real about “reflexive doubt”, it’s not something exclusive to believers in CAM and other forms of woo. (Besides, it’s not like most climate change denialists or anti-vaxers are actually anti-authority, much as they think putting on an “alternative” labels makes them such. They’re usually just appealing to an “alternative” authority – in the case of climate change denialists pseudoscience bought and paid for by oil companies, in the case of anti-vaxers and much CAM it’s various MDs who’ve morphed into quacks who promote pseudoscience. In the case of the religiously motivated, it’s the authority of a holy book or a God. All these count as appeals to authority. That’s the big irony, many of the people who get sucked into Big sCAM are actually just repeating marketing propaganda. Some people who think merely being contrarian or against something is actually thinking critically just don’t understand critical thinking – and mistake “critical” to mean “negative” or “anti” when critical thinking also involves positive critiques and affirmations. Some are just pretending to be skeptics – Scientologists, who are behind a lot of Big sCAM propaganda, are trained to do this kind of thing, lying to non-Scientologists is part of their official doctrine and strategy.)
To keep this based in reality, some medical professionals react exactly the same way about CAM and aren’t adequately skeptical about their own confirmation biases or the influence of industry on medicine and science. It’s understandable to do so, however it’s still being just as reactionary and is still “reflexive doubt”. This is why being able to say “we don’t know”, “we need to study this more” and “so far the best evidence suggests but there’s more research to be done” is so incredibly important when it comes to science and medicine. It may not be a comfortable position to be in, particularly when dealing with ideologues who claim to be certain and make appeals to “alternative” authorities and pseudoscience, or when attacks feel personalized. (Or when dealing with patients who want certainty and will resort to those who promise false certainty if science, medicine or their doctor can’t provide it.) However, if we don’t respect the limits of our collective and individual knowledge and become ideologues ourselves (and trade in our curiosity for the warm fuzzies and ego gratification of false certainty) we’ve already lost the battle between science and pseudoscience (and reality-based thinking and fantasist thinking). It really isn’t about sacrificing science at the altar of absolute certainty, it’s about fostering the understanding that science isn’t the same as religion but it’s the best tool we have for discerning reality when practiced in an ethical and unbiased way. This is why it’s so very important to keep corrupting influences – whether they’re ideological or commercial – out of science and SBM.
Holy CRAP, StatlerWaldorf! That’s perfectly scary! But, all I can see those doing are causing more csections because the woman isn’t dilating at the rate the machine thinks she should, because she’s not really in labor. But, given that we have one hospital in the area with a 95% epidural rate, 45% Csection rate, and 1 nurse to every 3 patients, I can see them using it so they can have fewer nurses to care for patients.
The vast majority of CAM is bogus but there are the occasional things that emerge from leftfield that aren’t – particularly in the realm of subjective experience such as chronic pain and psychology – meditation as a means of managing chronic pain is one. One doesn’t need the woo around it for it to work, it’s just about cognitive training and neuroplasticity. However, it’s worth keeping in mind that the scientific orthodoxy for a long time was that the brain didn’t change. It wasn’t until we developed tools to look at the brain that we started to begin to understand the true nature of the brain and mind. This doesn’t mean that all the religious connotations or beliefs regarding meditation are correct – in fact cognitive science has shown how they’re often incorrect and a result of cognitive glitches – it just means that reflexive dismissal of something (not doubt but dismissal) isn’t a very scientific approach. A lot of CAM advocate sand anti-SBM types – and ideologues in general – seem to be actually practicing “reflexive dismissal” rather than “reflexive doubt”. Doubt leaves room for exploration and curiosity, dismissal is a form of reactionary denial.
# bluedevilRAon 28 Jan 2010 at 8:51 am
“I always get a kick out of the “I know my own body better than the doctor” notion. Everyone knows their body to some extent, but the reason you go to the doctor is because something is not quite right with your body. You go to see the one profession that specializes in knowing human anatomy.”
Just to be contrarian… I’ve been surprised to see the “I know my body” or “I know my child” approach criticized a few times in comments here and respectful insolence. I guessing there must be people who use it to an annoying degree.
But, when a friend has a baby, that is always the advice I give them. “you know your child, if you think they are really sick or something is wrong take them to the doctor. If you feel you are being blown off, take them back or go to a different doctor.”
Reasons. The time my daughter had an ear infection and fever that went away and then came back two days later with a weird lethargy. Had to insist on seeing a doctor because the call nurse thought it was just a virus. But it was pneumonia.
A classmate of my son’s was found to have mild CP in his legs, but only after her pediatrician told her not to be concerned when he wasn’t walking at age two, come back in 6 month and we’ll check on it again. She went to another doctor for diagnoses and found that he needed leg braces to learn to walk.
I don’t want to portray nurses or doctors as incompetent, uncaring, etc. I think the large majority are knowledgeable and committed. But as the patient or parent you have to deal with the chance that you are consulting with someone who is incompetent or mistaken AND you have to do it without being an expert in the field. I have found the “I know my body or my child” approach and internet searches to be helpful in that regard.
StatlerWaldorf:
“I find myself in the position of being skeptical about following the herd when it comes to medical issues because I am an individual.”
That’s a twofer! You are an individual (in other words an expert on yourself) and you don’t follow the herd as if doing what others do is constructed as a negative exactly as Hobson-West described (” [they] construct trust in others as passive and the easy option. Rather than trust in experts, the alternative scenario is of a parent who becomes the expert themselves, through a difficult process of personal education and empowerment…)
“Look at these machines that two companies would love to see attached to every woman and baby in every labour and delivery ward in the US”
That’s yet another tactic of believers in “alternative” health.
It usually takes the just the form that you chose:
“Look at this folks. This is what they want to do to everyone. Isn’t it appalling? If they want to do THIS, you simply can’t trust anything they say.”
So that’s three tactics from the playbook for “alternative” health advocates, all of which confirm what I wrote above: “alternative” health is about the believers and how they would like to see themselves, not about science. People are divided into those (inferior) people who are passive and blindly trust authority figures and (superior) rejectionists who are “educated” and “empowered” by taking “personal responsibility”.
Fifi:
“To keep this based in reality, some medical professionals react exactly the same way about CAM and aren’t adequately skeptical about their own confirmation biases or the influence of industry on medicine and science.”
No, that’s an inappropriate comparison.
Being skeptical about claims and evidence is science; being skeptical of medical advice because it comes from doctors is reflexive doubt.
michele, I would say this is analogous to the skepticism vs. reflexive doubt discussion that is also going on. On the one hand, you must be skeptical. You can always question what a person says, particularly when the claim seems unreasonable. This is healthy skepticism and its completely different from reflexive doubting or contrarian thinking. Just as there is a healthy degree of patient empowerment (the ability to ask your doctor questions about your diagnosis, seek a second opinion, etc.) versus the “I know more about my body than a doctor could ever determine in 10 minutes.”
I agree with you that certainly a patient or parent can know more about what’s going on than the doctor. That only makes sense. You have a direct comparison of baseline behavior to sick behavior. Doctors rely on the patient or parent’s subjective information to help form the diagnosis. My complaint is that some patients reject the doctor regardless of what he/she says. It is an absolute stance they take. “The doctor can NEVER know more about my body than I do.” It’s a ridiculous position.
“Just to be contrarian… I’ve been surprised to see the “I know my body” or “I know my child” approach criticized a few times in comments here and respectful insolence. I guessing there must be people who use it to an annoying degree.”
It all depends on why it is invoked. The most important thing I learned from my medical school pediatrics rotation was this: If a mother says something is wrong with her child, something is wrong until you prove everything is perfect.
That’s very different than the way it is invoked by advocates of “alternative” health, which is: I know my child therefore I am an expert in what type of medical care my child needs or does not need.
micheleinmichigan – I see what you are saying, but I think the majority of the time parents are concerned about something that turns out to be nothing. I know this was the case with me. There were many times that I thought something was wrong with my son, only to be reassured by our pediatrician that everything was fine. (And in our case, luckily, he was right every time.) The internet can make you crazy with fear. I had a friend who was terrified because her son was not walking at 13 months, and she read on the internet that this was a sign of something terrible. (I can’t remember exactly what that something was.) Her doctor told her everything was fine, and she was convinced he was being incompetent. Of course, everything worked out fine in the end, but there was a lot of worry for no reason.
Of course there is some good information out there, but the majority is crap, and you have to wade through the crap which is difficult.
I think it is important to find a doctor you trust, and one that explains to you why something is/is not an issue, not just pat you on the head and tell you everything is fine. (All my doctors have always been good at explaining, but I hear about these other doctors.)
I would add to this. A proper skeptic, needing to make a decision on a matter for which he or she is unable (for whatever reason, lack of time being the most common) to fully examine the evidence, will provisionally accept the consensus of the experts in the field. The reasoning is that such consensus is a real form of evidence, and lacking counter-evidence, it is the best information available to the skeptic at the point of decision.
The distinction is, of course, that anti-vaxers, etc. who find themselves in that situation reject the consensus of the experts. And not provisionally, either. It’s very much an irrational assumption that those who know the most about the subject must necessarily be wrong. Which makes it hard, in many cases, for a more rational thinker to comprehend.
I’m also reminded of a House quote that really is spot on for this subject:
It’s really quite interesting just how conformist nonconformity tends to be.
Dr Tuteur – “No, that’s an inappropriate comparison.
Being skeptical about claims and evidence is science; being skeptical of medical advice because it comes from doctors is reflexive doubt.”
Not at all. There are medical professionals who have a knee jerk reaction to anything outside of their own knowledge base or anything that is claimed by CAM as being CAM turf (lifestyle and environmental factors regarding disease, for instance). That kind of knee jerk reaction or “reflexive doubt” is not about science, it’s a personal bias. I’m sure you’re aware that simply being a doctor doesn’t make one automatically more science-based (though it would be nice if it did all the time but doctors are people and just as prone to confirmation bias if they’re not vigilant for it, particularly if they’re not also researchers so specifically looking out for biases). A great example of this are the doctors who peddle woo. There are extremists on both sides, just as there are practitioners influenced more by industry and marketing than science on both sides. I guess the flip side of the “reflexive doubt” coin is “reflexive faith” – a little bit of understanding of how our cognition works and how we have to be vigilant for our own biases goes a long way to defusing the dangers of ideological or reactionary thinking and opens us to truly taking a scientific approach which includes curiosity and being able to say “we don’t know (yet)”.
bluedevilRAon 28 Jan 2010 at 11:37 am
“My complaint is that some patients reject the doctor regardless of what he/she says. It is an absolute stance they take. “The doctor can NEVER know more about my body than I do.” It’s a ridiculous position.”
Thank you for clarifying. I think I understand it better the second time around. My father was like that. He second guessed the doctors and self-diagnoses so much that ultimately he really undermined his care and pain medication level before his death from cancer. I genuinely don’t think he could help it. It seemed an integral part of his personality and any questioning of his approach (on the family’s part) led to outright rage.
Dr. T.
“It all depends on why it is invoked. The most important thing I learned from my medical school pediatrics rotation was this: If a mother says something is wrong with her child, something is wrong until you prove everything is perfect.”
My new favorite rule.
That’s very different than the way it is invoked by advocates of “alternative” health, which is: I know my child therefore I am an expert in what type of medical care my child needs or does not need.
Also thanks for clarifying. Having worked as a graphic designer and ruined numerous beautiful designs based on the clients wishes, I try to remember that professionals (of all sorts) are not tools put on this earth to do my bidding. If I hire an expert, I try to respect their expertise and not “step on any toes”.
Ha! I am hoping that not all doctors are like Dr. House, lol.
Reflexive doubt does seem to be the standard position for a skeptic, whether the claims are being made by a medical doctor or a quack (or both). Claims have to be proven with evidence. If anybody is going to something “different” to my body that isn’t the natural default position of being, the benefits have to be proven to me, whether it be vaccinations, c-sections, IVs, CEFM, acupuncture, surgery, vitamins, drugs, or anything else. Some people are too quick to reject authority, yes, but for every one of those, there is another person who doesn’t speak up harshly enough to a medical professional who may be making a med mal error. Or yes, I have mom friends who had to be very firm to get a diagnosis for their kids when the pedi brushed them off.
There are some interesting chapters in Michael Shermer’s “Borderlands of Science” about revolutionary science and the balance between openness to experience, conscientiousness, and agreeableness (trust is one). And these personality traits in various scientists throughout time like Copernicus, Darwin, Sagan, Brahe, Freud, Wallace, etc. Basically, you have to be somewhat open to strange claims (Carl Sagan was a big proponent on SETI), but not so open your brain falls out (as in Freud or Wallace).
IOW, I agree with the distinction between reflexive doubt and contrarian, the latter is a bit better description.
[It is just a mindless rejection of authority, with potentially devastating consequences.]
Mindlessly rejecting authority is foolish, of course. Doing anything mindlessly would be a mistake. But mindfully questioning authority is one of the best things we can ever do. When patients think “I didn’t go to medical school and my doctor did, therefore I will trust and believe anything he/she tells me,” they are underestimating their own intelligence. Although the details and the terminology are often incomprehensible to the non-medical public, the general ideas can usually be grasped. And anyone willing to spend the time can learn some of the details and terminology as well.
It’s important to remember that medical school does not teach all there is to know, since there is a vast amount of medical knowledge and no one can learn it all. And even if it were possible to learn all there is to know in medical school, or in years of practice, the fact remains that most things are simply not known yet.
So however long you spend in school, and however long you practice, you will never know it all. Most of your patients’ problems will go unsolved. That’s just the way it is.
Patients really owe it to themselves to become informed, at least to some degree, about their problems. Maybe your doctor just doesn’t happen to know much about whatever is bothering you. Or maybe your doctor is too quick to write out drug prescriptions, or to recommend surgery.
Each doctor has many patients, but we each have only one body. Not that doctors don’t care, just that their time is very limited. If I am sick I am highly motivated to find a diagnosis and cure. My MD, on the other hand, has hundreds of other patients to worry about.
Yes, most emphatically yes, we should question authority. We are lucky to live in a free democratic society where questioning authority is allowed. It should be encouraged, not discouraged.
I remember when hormone replacement was recommended to most women in their 40s or 50s. As soon as I heard about it I thought “that sounds like dangerous nonsense to me.” If I had been as trusting of authority as most people are, I would have been taking hormones.
I am not an anti-vaccinist or a natural birth advocate, or anything like that. But I can certainly understand why people might want to look carefully at these things. Maybe some obstetric practices are less than ideal. If I were pregnant I would learn all I could about child birth and make an educated decision. I would not assume that my doctor knows all there is to know on the subject.
There are nuts and fanatics of all types who believe all sorts of nonsense. It is easy to take anti-authoritarianism to ridiculous extremes, and that is not what I’m talking about. I am talking about being a SKEPTIC. Skeptics naturally distrust authority. We may respect authority, but we do not blindly trust it. We know that every authority or expert is a limited and fallible human being, and that groups of authorities and experts tend to become political.
This blog is supposed to be about skepticism. It should be promoting, not discouraging, a healthy distrust of authority.
“This blog is supposed to be about skepticism. It should be promoting, not discouraging, a healthy distrust of authority.”
No, we should be promoting a healthy distrust of CLAIMS, not of authority.
“I think it is important to find a doctor you trust, and one that explains to you why something is/is not an issue, not just pat you on the head and tell you everything is fine. (All my doctors have always been good at explaining, but I hear about these other doctors.)”
Yes, this is the key. I have a good pedi and OB and orthopedia doctor, but I had to search to find them. There’s a lot of incompetence out there. I don’t trust a doctor just because he/she went to medical school- there are way too many quacks out there.
I agree with Amy’s blog. However, I’ll go farther than her. IMO, there is also a very strong anti-male, radical feminist element involved in alt. med. which you find in many nurses, midwives and a some highly intelligent, articulate liberal arts majors. With limited time and space I can only give one example of what has led me to this conclusion. It has been cut and pasted from my webpage where it is presented in a different context.
http://www.rosemaryjacobs.com/WellnessCenter.html
Many of you will read a few lines quoted below and dismiss it as lunatic fringe. Oh if that were only true! Rosemary Gladstar is a herbalist who gives lectures to nurses for continuing education credit at the hospital affiliated with Dartmouth Medical School in NH. I have spoken to the nurse in charge of the program who insisted she believes Gladstar is very knowledge about botanical drugs. (I have also complained to the doctor who heads the hospital.) Gladstar has also lectured at my local hospital and I suspect that many of those in her audience were nurses.
While I know that many, probably the vast majority, of nurses today are intelligent, competent, caring, well educated professionals, there is also a segment, the one embracing and promoting alt. med., which, I suspect for emotional reasons, rejects science and reason. I cringe at the thought of me or a loved one being incapacitated at night alone in a hospital with one of them.
Here are some quotes from HERBAL HEALING FOR WOMEN by Rosemary Gladstar:
In every culture throughout the world you will find a great body of folklore concerning the indigenous plants of that region and the wise women who used them. For thousands of years women collected plants from meadows and woodlands and used them to create healing medicines. They gathered herbs by the waning and waxing of the moon, artfully created preparations, and developed herbal formulas. Through an intuitive communication with the plants, women learned the healing powers of these green allies. Their wisdom developed over countless years as remedies were tried, proven, and passed on. The best of these remedies were added to the lore, and the wisdom was transferred from mother to daughter, from wise woman to apprentice for countless generations. This is the legacy we have inherited. Healers, wise women, simplers – these women were the center and source of medicine and healing for their communities. They understood the cycles of the seasons, the ebb and flow of the universe, the sun, the moon, the stars, and the natural rhythms of their bodies. p. 19
Alchemy and magic are integral parts of herbalism and healing. p.24
If a plant has been found safe and effective for a thousand years of human use, it may be wise to question the validity and applicability of the scientific tests now being used. There is generally some unidentified magic in the plant in the form of another chemical or an innate natural wisdom that allows the medicine, when taken as a whole, to function in a safe and beneficial manner. p.25
I think herbs act in a particularly impressive way on women’s health because there’s a natural affinity between women and the plant world… They seem to heal on a cellular level. p.23
END QUOTES
When a patient comes to me it is because of a problem they have. They do not have my education and years of experience dealing with problems like theirs. I am their ally and adviser in dealing with their problems. They are always in charge. They are always free to see someone else.
SF Mom and Scientist – Too true the internet can make you crazy and particularly in the first few years of the first child’s life it’s easy to get OCD about every little thing. I don’t want to give the impression that I think parents should take their kids to the doctor for every little thing.
Everyone knows the parent who thinks Billie needs intensive speech therapy because he is mispronouncing his t’s at age 2.
And that is annoying, hopefully a good pediatrician knows how to deal with that. Family members and friends can be helpful. But, knowing parents of kids who have special needs (hearing loss, facial differences, speech issues) I know some family and friends minimize even significant problems and give bad advice.
I try to be pretty cautious about the internet stuff. I consult sites like familydoctor.org or mayo clinic which seem to give pretty mainstream advice. I am in yahoo groups for my son’s particular conditions, maybe these groups are above average, but they are particularly good helping you see when you’re worrying too much. I try to double check different sounding info from parents against the condition advocacy groups like the cleft palate foundation. But, from this blog and respectful insolence, I have heard about some of the autism internet groups that are very misguided.
We have a great pediatrician who may be more cautious than me (some of the nursing staff is not great.) But, we deal with around 7-10 specialists for my son, some of who rotate or take a while to get to know, trying to get a second opinion on every test or procedure would be too weird and time consuming, thus the internet and groups. I have had one or two specialists that I second guessed or was unhappy with, but they were not emergency situations and with some watchful waiting and serious conversations they mostly worked out.
I don’t know the answer on trying to find a balance. For me I think it’s a cautious feeling (Is this okay?) vs. a bad feeling (this is not right.) But that is NOT science based. Questioning within reasonable amounts AND being open to the answers is important too.
“I agree with Amy’s blog. However, I’ll go farther than her. IMO, there is also a very strong anti-male, radical feminist element involved in alt. med. which you find in many nurses, midwives and a some highly intelligent, articulate liberal arts majors. ”
I was wondering when nurses would be added to the “hate” list of midwives and liberal arts majors (aka new agey liberals?) on this website.
I know you put the disclaimer in there, but plenty of doctors promote alternative medicine too.
Nice website Rosemary!
weing on 28 Jan 2010 at 1:28 pm
“They are always free to see someone else.”
To any of the doctors/health care providers/patients
I’ve always wondered how a patient seeking a second opinion or switching doctors after a disagreement is really viewed by doctors. What if the only other “in network” specialist is in the same practice? Is that a slap in the face to the first doctor or uncomfortable for the second doctor? or no big deal?
Should you send the first doctor a conciliatory note?
Lizkat has one skewed view of medicine. “the fact remains that most things are simply not known yet…most of your patients problems will go unsolved.”
Where did you get that notion from? What “things”? Actual diseases or elusive, vague, non-threatening symptoms? No doctor is claiming to know everything or cure everything (except the quacks). It is precisely because medicine is so broad that we have specialists.
We know much of the way the body works and how diseases progress. Although we lack good treatments for certain cancers, genetic disorders, and neurological/psychiatric problems, we are all the time progressing towards finding better treatments and cures. So why throw the baby out with the bathwater, which is what you are doing by trying to qualify that “most” diseases are untreatable and unknown.
As others have pointed out, if this were an ideal world, then we would have all day to sit around and investigate claims to satisfy our skeptical minds. However, most of us don’t have time to do this so we consult the scientific consensus. This is not antithetical to being a skeptical. This is merely practical.
michele, I think the doctors I work with just appreciate an explanation. Even one as simple as “I was concerned about the risks of treatment and I just wanted to get a second opinion before starting.” The more serious the problem, the more understandable this would be. They might even prefer you stay within the practice because they’re always afraid of losing the business. I think doctors would see a note as a nice gesture, but that’s just me.
About second opinions – when I was pregnant a problem was found on an ultrasound, and I was actually told by the doctor that I should get a second opinion. I was surprised, but she said that these things can be tricky and it is best if I got another viewpoint. I’d like to think this means that doctors are becoming more comfortable with patients getting second opinions?
“Dear “Doctor Authority” — please kiss my a**.”
oh hark the injured ego of someone who can’t accept that someone might know more than they do. i’m sure you wouldn’t be caught dead asserting your “expert opinion” in whatever field you might be an expert in.
I remember a lecture on parenting which I attended when I was a young mother. We women were told that, when we were undecided on what to do, we should go with our “instincts.” As mothers, we are deeply connected to our children, and have a special sense on what’s right for us. Listen to that inner voice. Trust it. And everyone nodded.
But when I thought about it later, it made little sense — especially as a guide. It’s one thing if you know what you want to do, but someone is telling you to do something else. Do what you want. If you are genuinely torn between two choices, though, there had to be at least a little bit of “inner feeling” going in both directions. Part of you thinks it would be a good idea to let little Tommy stay up late and watch the special movie; part of you thinks that it will not be worth the next day of tired child. So which feeling is the “special instinct?”
You identify it after the fact. If you are satisfied with your choice, you tell yourself (and others!) that you are sooo glad you trusted that special maternal instinct. And the mystique grows. If you are not happy with the result, you berate yourself for not listening to that little voice telling you it was wrong. And the mystique grows yet again. No wonder we can be secure that, deep down, we always know what’s right: it’s unfalsifiable.
A useless concept, and a useless piece of advice. But oh, it made us feel better at the time. Empowered.
Michelle B wrote:
I wonder if timidity is part of the reason that so many alternative medicine advocates seem to be terribly sensitive to any criticism, critique, or even disapproval of CAM. They want to feel empowered, and they can’t feel that way unless they are given nothing but support. Critical thinking, is criticizing them.
It might help clarify our thinking about questioning medical authority if we compared it to questioning the authority of the auto mechanic who tells you what is wrong with your car and what repairs are needed. Does reflexive doubt operate the same in both situations, or is there a double standard?
“questioning the authority of the auto mechanic who tells you what is wrong with your car and what repairs are needed. ”
Oh I could tell you some stories about that! So could everyone I know, for that matter.
Hey, I’ve seen doctors who were just as short, brusque (and frankly, incompetent) as Purdy describes. Not just followup visits, and someone suggests above, but even first-time visits with specialists. I had to chase one neurologist down the hall to get him to order the EEG that was the main reason my primary care doctor had referred me to him, because he was in and out so fast (and completely ignoring all his notes, evidently). It’s not just a lack of face time/bedside manner you get, I could list you quite a few things such doctors have done that were outright dangerous to the patient (or harassing, or simply incompetent).
But you know…generally, what I do in these cases is to simply move on, find a better doctor. I don’t tell the doctor why I’m not coming back; for all the time and effort they’ve given me, it’s not like they’re going to even remember me anyway. When they’re primary care docs or specialists who are plentiful, just finding somebody else is relatively easily done.
It’s not so easy if you have restrictive health insurance, though. It’s also difficult to just find another doctor if specialists in the field are not plentiful. I can really sympathize with someone if they’ve *had* to see someone like that, and ended up getting substandard–or flat-out wrong–care.
(That’s not to say I have any kind of innate distrust of doctors. I’ve also had some downright fantastic doctors, and I adore most of the docs I see now. Just that the rotten ones ARE out there.)
Sastra – “I wonder if timidity is part of the reason that so many alternative medicine advocates seem to be terribly sensitive to any criticism, critique, or even disapproval of CAM. They want to feel empowered, and they can’t feel that way unless they are given nothing but support. Critical thinking, is criticizing them.”
Interesting point. Since CAM involves people, I think there are a wide variety of motivations for believing in it (just as there are wide variety of motivations for people becoming MDs or having absolute faith in medicine or doctors). Of course, as an atheist (born and bred) I’m not particularly big on faith (unearned trust). Trust is great, faith no so much!
Some people are attracted to CAM because of warm fuzzies but one key feature of a lot of CAM modalities is that they seem to feed unhealthy narcissism. Ideologies are about identity construction, we start to mistake an idea for who we are, so any criticism of the ideology becomes a criticism of identity and a direct attack upon our ego. Of course, this can be equally true in other arenas and there are doctors whose whole careers are built upon feeding their client’s narcissism (or who are ideologues themselves). It’s not really very surprising that LA/Hollywood physician to the stars types so often fall into peddling woo. Or those who primarily service the very wealthy.
It’s also not very surprising that advocates of woo are often found amongst the moderately well educated. Be it engineers who seem particularly fond of certain kinds of woo – to call out the patriarchal side of woo since the matriarchal side of woo has already been mentioned. I’d suggest that branding matriarchalism as feminism is a mischaracterization of feminism, mainly because most woo isn’t very feminist. Women aren’t goddesses that tap into magical knowledge, we’re people. Feminism is about women being treated equally as human beings, not about being placed on yet another pedestal!
I have my own stories about auto mechanics. My point was that both the mechanic and the physician have special knowledge and we ought to judge their recommendations by similar criteria.
” the mechanic and the physician have special knowledge and we ought to judge their recommendations by similar criteria.”
I do. I am highly skeptical of both. I need them sometimes, but I question and compare. I wish I could work on my own car. I do work on my own health, as much as possible.
And by the way, when my mechanic says I need something expensive, I check with Google. If I ever get sick (which is seldom) I do extensive research in the library and on the internet.
I think this is part of a larger cultural phenomenon that is a rejection of Enlightenment rationalism alltogether. In the U.S., faith is widely seen as an unquestionable virtue, and there is a deep suspicion of intellectuals generally. Just have a glance at Al Gore’s Assault on Reason, Chris Money’s Republican War on Science, David Colquohon’s comments on The Age of Endarkenment, Susan Jacoby’s The Age of American Unreason, and so on. On the right and among the middle and workig classes, science and intellectualism are held in great suspicion, and among the intellectual left notions of postmodernist relativism hold enough sway that it is hard these days to find anyone who openly supports the philosophical underpinnings of scientific medicine which emegred most recently in the Enlightenment.
“but one key feature of a lot of CAM modalities is that they seem to feed unhealthy narcissism.”
Indeed, t seems that they promoted in ways specifically designed to flatter the believer.
“Does reflexive doubt operate the same in both situations, or is there a double standard?”
There is double standard there, as in so many other areas where expertise is required. I don’t notice many people reflexively doubting the safety of tall buildings or the skills of airline pilots.
mckenzievmd:
“I think this is part of a larger cultural phenomenon that is a rejection of Enlightenment rationalism alltogether.”
Sadly, I am forced to agree.
@ mckenzievmd
couldn’t have it said it better. it reminds me of high school where being smart is inherently uncool and getting a C is an equivalent of being laid back, cool, “whatever” and easy going. its philistinism plain and simple…where that all comes from, you got me. it seems like a silly proposition to mire oneself in childhood norms when there is a big bold world out there to explore.
mkenzievmd – “I think this is part of a larger cultural phenomenon that is a rejection of Enlightenment rationalism alltogether. In the U.S., faith is widely seen as an unquestionable virtue, and there is a deep suspicion of intellectuals generally.”
It’s an attack on reality-based thinking. (I like the term reality-based thinking since that was the term being bandied around the White House regarding what they wanted to discourage and it makes it quite clear what’s really going on.) It’s coming hard and fast from both the left and right wing (and has now spread to Canada, Britain was infected long ago), and much of it is motivated by promoting corporatism rather than liberal or conservative values (and involves buying politicians on both sides). That’s why you’ve seen Republicans such as Orrin Hatch and Democrats like Kennedy reach across the aisle to support woo, and why you’ve got flaky new age types and Christian Fundies both promoting woo and supplements…not to mention the Scientologists and the weirdest players like General Stubblebine and Rima Laibow, who seem to be connected to all kinds of strange unreality-based things. It’s been quite remarkable (and horrifying) seeing exactly the same things start to unfold in Canada vis a vis corrupting public science (as well as dismembering the CBC and “commercializing” it into irrelevance, gagging climate scientists, etc). No doubt we’ll have Jesus riding dinosaurs in the Science Museum before long…sigh.
@Zoe, “I was wondering when nurses would be added to the “hate” list of midwives and liberal arts majors (aka new agey liberals?) on this website.
I know you put the disclaimer in there, but plenty of doctors promote alternative medicine too.”
Zoe, first I don’t have a “hit list”. I am in no way affiliated with this site where bloggers incidentally debunk alt medders including those with MDs. I’m just a commenter like you and a liberal arts major at that.
Second, do you have any idea how many MDs promote and practice alt. med. and how many nurses do? If so can you break the numbers down into categories to show how many practice wacky med as opposed to plausible but not proven med and how many practice really dangerous med using dangerous supplements and practices as opposed to the relatively benign kind such as recommending or selling inert or relatively useless but not dangerous supplements for which they can dig up some evidence of efficacy, like vitamins maybe or a practice like acupuncture for headaches where I assume, but am not certain, that they can dig up some studies indicating efficacy even though the body of evidence doesn’t indicate that it works while the likelihood of injury caused directly by the practice is quite small?
I don’t have such numbers although I know some readers know how many nurses practice TT, Therapeutic Touch. If I remember correctly, the numbers are very high indeed, and it is certainly a “therapy” that I consider wacky, waving your hands over people to redirect their energy to heal them. I wonder if there are any doctors doing TT, not just letting nurses use it on their patients but doing it themselves. I’ve never heard of any.
If there are institutions giving continuing ed credit to doctors to learn about botanical drugs from a herbalist who states that, “Alchemy and magic are integral parts of herbalism and healing,” and also tells people to go out and pick their own herbs while noting that she, the expert, once picked the wrong one herself and got sick, but luckily not too sick because the plant was only mildly toxic, I’ve never heard of them. If I had, I certainly would consider them just as dangerous giving continuing ed credit for such things.
I think you said you teach the history of science. If so, I’d be most interested in hearing your comments on Rosemary Gladstar’s statements which I quoted above as well as what you think of a supposedly scientific institution that would offer continuing ed credits to people taking her courses. I would also be interested in knowing if you feel that she is promoting “women’s healing talents” as being superior to men for no reason other than that they are women.
I may be very wrong, but I have the impression that most readers here consider alt. med. as a field that requires lower levels of evidence to support it than SBM has and that most of the medicine practiced falls someplace in between the two. Based on 15 years of intensive experience with alt. med., I think that is incorrect. I don’t think that alt med and scientific med are different breeds of cat. I think they are different animals. To paraphrase Marcia Angell, if I remember the name of the former editor of the NEJM, when scientific medicine lacks evidence, it considers that a fault to be remedied. Alt med. doesn’t feel the need for evidence.
How could I have been so blind? All these years thinking for myself when there were experts(and marketing professors) to be listened to.
An interesting idea. Reflexive doubt may help explain why those questioning the mainstream tend to gravitate towards the absurd.
It’s a competitive pastime, perhaps? I have observed that within alternative cancer circles the viewpoint that your doctor is deliberately trying to kill you seems to score quite well and is rarely penalised
Thus with vaccines, it is thus not enough to express some uncertainty as to the cost/risk/effectiveness of one or two vaccines, something that can be argued with some reasonableness.
The “truth” evolves into vaccines killing people by the hundreds, while the doctors are trying to hush it up.
And why would anyone think that they work, anyway? They clearly don’t, on the data we compulsive doubters have carefully selected.
Most , I admit, stop short of Stage lV, where vaccines cause the very diseases they are intended to prevent, or are employed to spread other diseases, or to produce infertility.
Rosemary, I have no idea. I do know that I left a GP a while back because she started selling natural supplements out of her office. In fact, all of the cases I hear of in the news are doctors promoting alt med. This is probably because they are just higher profile, and get more attention. My mother is a nurse practitioner, deals with a lot of bias from doctors, and is about the least into woo of any person I know. These are anecdotes though, I don’t know the real numbers. However, just because *some* nurses or *some* midwives or some doctors promote alt med doesn’t mean you can generalize about the group. There are plenty of quacks to go around. I mentioned before that Nancy Snyderman’s book (NBC medical correspondent) mentions that doctors like integrative medicine. Maybe it’s not true, but I tend to believe that the entire field of medicine is corrupted.
I have to say that I LOVE the auto mechanic analogy. I think most of us would agree that it’s a bad idea to reflexively doubt OR reflexively trust an auto mechanic. The stakes are lower, but you might just end up pretty poor if you believe everything the dealership tells you is wrong with your car and the thousands needed to fix it.
Here’s something of tangengial interest. in researching a personality inventory for a selection battery, i came across this little gem of an abstract:
“This paper reports two studies with similar methodology. Students completed the NEO Personality Inventory-Revised (NEO-PI-R; Costa & McCrae, 1992) and three different intelligence measures (Baddeley, 1968; Philips & Rawles, 1976; Wonderlic, 1992) soon after arriving at the beginning of their course. These scores were then related to a reliable graphological analysis of their hand-writing in exam scripts few months later (Study 1) and twenty-months in another (Study 2). Results showed that the 14 graphological variables factored into two interpretable factors called dimension (size, width, pressure, percentage used etc) and details (loops above, below, dotted i’s, crossed t’s). Correlation and regression analyses in both studies showed fewer associations with the Big Five personality variables than maybe expected by chance. Graphological variables did correlate with both participants’ gender and intelligence, but the pattern was different in the two studies reinforcing the idea that chance factors were influential. Thus, once again, despite attempts to use both psychometrically valid personality measures and reliably measured hand writing factors collected under non-self-conscious conditions there appears to be no robust relationship between graphology and personality.”
Here we are in 2010 still dutifully providing credence to crank claims in order to make absolutely damned sure that handwriting has nothing to do with personality, intelligence, job performance or…anything. reminds me of continually providing evidence to the efficacy of vaccines whilst little contrary evidence ever rears its head, muc to the chagrin of other shovel ready research projects in need of funding.
@Sid Offit
“yes! if Napoleon says it, it must be right!” Puh-Leeez! save the straw men for some other board.
Dr. H and mechanics.
Well, with mechanics I only trust the ones that take me back into the shop and show me the malfunctioning parts, the worn rotors, etc. I dislike the ones that are dismissive of my reports of a strange symptom…I mean noise or dysfunction.
A few differences are: When the mechanic repairs my car, usually all I have to lose is money. (With the exception of the time my Dad “repaired” my brake lines, which never happened again.) Mechanics receive a lot less respect and salary. But, there are NOT thousands of websites devoted to disputing established mechanic practices or touting alternative car repair. It least I don’t think there are. On the other hand a lot of people DO work on their own cars or at least used to before they became so computerize.
The conclusion, SBM must implant patients with algorithm coded microchips and check engine lights, which we patients will all consciously ignore.
The last difference is, of course, when a mechanic offers to give you the broken parts that he has replaced you think he is honest. When a doctor offers the same…
“All these years thinking for myself”
Ironic, isn’t it? You’ve simply been following the herd all along, just a different herd.
I find the sociology of “alternative” health very interesting. It goes a long way toward explaining how believers in “alternative” health are resistant to evidence, and why they perpetually confuse defiance with being “educated.”
“It’s a competitive pastime, perhaps?”
It is within the “natural” childbirth community. The latest is unassisted birth, having a baby at home with no professional attendant of any kind. It’s nothing more than a self aggrandizing stunt.
Sastra – regarding intuition
You might be interested in one or two books I read years ago. They were Gavin De Becker’s, Gift of Fear and Malcolm Gladwell’s Blink. They are not scholarly works, but they are interesting in their views on human intuition.
Both view intuition as a process where the brain is collecting data via the five senses, processing it unconsciously and quickly sending a feeling to the conscience mind. Somewhat how you might be turning to look at the blur in your peripheral vision before you thought about it. They are not spiritual or mystical.
Becker, who has a security background, focus’s mostly the idea that many people intuitively recognize the signs of a dangerous situation (like a robbery in process) before they consciously do. But he also covers the fact that intuition not only fails but is under minded by reflexive anxiety.
Gladwell, who is a science journalist, talks particularly about intuition’s strengths and weaknesses. The most successful times being people very experienced in a field, where observations have become so automatic that they become unconscious. I believe the times it often fails most spectacularly are when people have unconscious prejudices or are in highly stressed/emergency situations.
But you see Amy, you assumed. When have I said that I am more expert on myself than a medical professional running tests, using their medical knowledge etc.? What I want is someone to listen, and work with me on my own health concerns and those of my family. Yes, I do try to read up because I studied biology through to elective courses at university. I like to be educated on health/medical issues, but don’t think I know more than professionals in the field. My family and I have received poor medical care on many occasions and this is why it is good to be knowledgeable.
I use osteopath and massage to treat my back issues because it works! I used strong muscle relaxants in the two cases where I had major spasms and could barely walk. Saw my GP for that of course. Any time my family members or I are sick we go to our GP. I always check the medicine package inserts for dosage, don’t just follow the sticker put on by doc or pharmacist in case there is a discrepancy. For pregnancy I see an ob-gyn and midwife. Because of mistrust with my former ob-gyn and falling through the cracks at the hospital with my first birth I chose ob-gyn prenatal care but a home birth with midwife for my second child (a great birth!). Recently I have become aware of an ob-gyn who supports natural birth and does waterbirths in a hospital setting, so if I have a 3rd that might be the way I will go. I selectively/alternatively vaccinate my kids, and choose the brands to use. E.g. No vaccinations at birth. No BCG at all, Hep B vaccine when there is a gap in vaccination schedule at around 3 yrs old. Prevnar and Infanrix 5-in-1 not given on the same day because of the combined aluminum amount, instead stagger those a month apart. H1N1 vaccine – chose single dose vials of a brand to make sure there was no thiomersal or adjuvant (and if that wasn’t available to me, yes, would likely not have vaccinated for H1N1 at all). We have never had any seasonal flu vaccinations and I just can’t see my family and I taking several flu shots every year for the rest of our lives (safety research for that?). I don’t see the sense in that, because it isn’t possible to rid the world of influenza.
I don’t make these choices to thumb my nose at medical professionals or to feel superior amongst my mommy friends. Most certainly I am open to learning what is science-based and what isn’t and consider medical choices with that information.
Amy said, “It is within the “natural” childbirth community. The latest is unassisted birth, having a baby at home with no professional attendant of any kind. It’s nothing more than a self aggrandizing stunt.”
Really? Have studies on unassisted birth shown that women do it as a “self aggrandizing stunt” or is that your own personal bias speaking.
bluedevilRA and SF Mom and Scientist
Thanks for the pointers on second opinions. Much appreciated!
My new rule. I will only use reflexive doubt when talking to a mortage broker or telemarketer.
Zoe, you can’t learn about alt. med. from the news. You have to talk to the practitioners and believers in person or on one of their forums. I’m pretty sure a person as rational as you appear to be will be astounded by what you learn. I certainly was. And it isn’t about homeopathy or chiropractic. It is about selling “dietary supplements”, the fuel that feeds the industry for the big players, not the small true-believers they feed on. It is about money not health. It is about conmen and the gullible people they prey on.
You said, “just because *some* nurses or *some* midwives or some doctors promote alt med doesn’t mean you can generalize about the group,”
I didn’t generalize about the groups. I said, “While I know that many, probably the vast majority, of nurses today are intelligent, competent, caring, well educated professionals, there is also a segment, the one embracing and promoting alt. med., which, I suspect for emotional reasons, rejects science and reason. I cringe at the thought of me or a loved one being incapacitated at night alone in a hospital with one of them.” But you dismissed that as a “disclaimer”. I realize that communicating on the Internet is tricky at best, but I really meant that when I wrote it.
I also am sure that if your mother is an NP that she has found many doctors who are a real pain. I certainly have met a few as a patient, and I have not hesitated to tell them off in no uncertain terms.
In my experience, which is anecdotal, while many doctors who believe in scientific medicine do practice the unscientific kind, they do it for different reasons and they do it cautiously. Some do it for the profit. (I’ve always said it should be illegal for anyone treating patients to sell them the products they recommend. Such a law would put most quacks out of business very fast.) Others succumb to the pressure from patients and society as a whole. Others do it because they think that it calms and relaxes patients which makes it easier for them and more pleasant for the patient. As an example, when someone with a cold demands an antibiotic, some doctors who know it is not warranted will find it easier to talk the person into taking vitamin C instead. Some will sell it to him for the money and because “it won’t hurt and he’ll just buy it from someone else anyway.” That is bad in my book but it is at least rational. Thinking that you can wave your hands over people and redirect their energy is not rational as far as I’m concerned.
Perhaps no one reads my comments. I find it astounding that the majority of the people here could read the Gladstar quotes I posted, learn that she lectures nurses at Dartmouth for continuing ed credit where they believe she is knowledgeable about botanical drugs and not have the same visceral reaction I had. As far as I am concerned this is in a different category than pushing vitamin C instead of an unwarranted, possibly harmful, antibiotic.
If you ask your mother to look at the Gladstar quotes and also ask her about nurses practicing TT I’d be most interested in hearing what she says.
“Perhaps no one reads my comments. I find it astounding that the majority of the people here could read the Gladstar quotes I posted, learn that she lectures nurses at Dartmouth for continuing ed credit where they believe she is knowledgeable about botanical drugs and not have the same visceral reaction I had.”
I read your quotes and I share your reaction. It’s just that iI no longer find it surprising because I’ve seen similar things so often. In certain circles of midwifery, things are even worse.
In some midwifery programs certified professional midwives (the midwives who don’t have a college or a nursing degree) take courses in “gem energy” and “flower essences.” Then they are surprised that no one takes them seriously.
“I find it astounding that the majority of the people here could read the Gladstar quotes I posted, learn that she lectures nurses at Dartmouth for continuing ed credit where they believe she is knowledgeable about botanical drugs and not have the same visceral reaction I had. ”
I read them, and I’ve read similar before (I have a colleague who actually trained with her and espounses the same religion). I just don’t have any reaction against nurses when I read it. The wellness center you spoke of, at North County, is run by doctors turned administrators, I’m assuming. I don’t know for sure, but I’m betting that there is a similar trend in my local hospitals. Other classes they have at that hospital wellness center include reiki, inspirational journaling, and “your heavenly future” (woo boy!). Like I said, I think you let doctors off the hook too easily.
If we’re going to villify doubt and glorify trust in doctors, then people could just as easily trust Dr. Weil, Chopra, Oz (etc etc etc), or the GP of mine who started selling herbal supplements. I don’t buy it. But you’re right, as a teacher and a liberal arts one at that, every bone in my body says “question and doubt” whether it is an authority or not. So I guess I’m biased.
Oh to add, with people against childhood vaccines, the problem isn’t that they are questioning doctors, it’s that they are coming to the wrong conclusions for some reason. They are replacing one authority with another completely unqualified authority.
A big part of it is fear, part of it is not knowing how to objectively evaluate sources (wikipedia is no good, neither are celebrities), part of it is trust in anecdotes (knowing people with autism, not knowing anybody with measles) and then confusing correlation with causation (18 month shots, autistic kids within a few months). Part of it is a lack of understanding how vaccines work and the process of science. Part of it is this huge push in ALL parts of society against technology (even as we embrace our ipods and ipads); the pendulum is swinging. It will swing back though.
StatlerWaldorf, what evidence did you use to design a superior immunization schedule to the one recommended by the American Academy of Pediatrics?
Alison Cummins, I don’t live in the United States and am not American. Is there such thing as a superior immunization schedule? For example, is the one recommended by the American Academy of Pediatrics superior to those found in European countries? If I did hijack the topic with a long explanation about my vaccine choices, would it matter? Anything other than what the AAP has recommended would be seen as non-science based.
Regarding second opinions:
In my opinion, second opinions are largely a waste of time. Of course your opinion on this may differ. But which of our opinions is correct? And that’s my point:
Look at it this way. Why do you get a second opinion? Is it because you don’t trust the first opinion or because you don’t trust the doctor giving it. If you don’t trust the doctor giving it then you need a new doctor, not a second opinion. And what happens when you get your second opinion. If the second opinion agrees with the first, will you be happy? Or perhaps the second opinion was as wrong as the first (same school, same drug company rep, same mentor). Worse still, what do you do if the second opinion is different from the first? Flip a coin? Get a third opinion? And what then?
On the other hand, can you just accept blindly what is recommended by your doctor?
When my father developed prostate cancer, the opinion was that I should have a prostate test. Just before doing so, I coincidentally discovered, through a link to an article I happened to read on line, that the RACGP do not, and have never, recommended prostate cancer testing. I investigated further and discovered that this advice was indeed evidence based. And more recent large clinical trials in America and Europe seem to back up their opinion.
I don’t know the solution to this problem.
I don’t have the inclination nor the time to investigate every medical problem as thoroughly as I investigated prostate cancer testing.
I said, “Look at these machines that two companies would love to see attached to every woman and baby in every labour and delivery ward in the US”
Amy replied, That’s yet another tactic of believers in “alternative” health.
It usually takes the just the form that you chose:
“Look at this folks. This is what they want to do to everyone. Isn’t it appalling? If they want to do THIS, you simply can’t trust anything they say.”
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Amy, where did I say that “they” (obstetricians or medical staff?) could not be trusted because two companies produce such machines? If you will note, I said the COMPANIES would love to see these machines attached to every woman and baby (so good for mom and baby and docs, and great money for them!). It remains to be seen if maternity departments feel the same way about such machines. If this technology is viewed as an invaluable tool in obstetrics, then perhaps it will have a very high uptake and women in the future may not be giving birth without it. What is your view on these machines?
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Amy said, “So that’s three tactics from the playbook for “alternative” health advocates, all of which confirm what I wrote above: “alternative” health is about the believers and how they would like to see themselves, not about science. People are divided into those (inferior) people who are passive and blindly trust authority figures and (superior) rejectionists who are “educated” and “empowered” by taking “personal responsibility”.”
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Well, seems you’ve got us all pegged.
Amy, what kind of feeling do you get when you post your articles on here and your infamous blog… you wouldn’t by chance be feeling superior to all of us nitwits who don’t have medical degrees or PhD’s in science and yet dare to question medical authority?
StatlerWaldorf, Cool! I’m not american either: I’m Canadian. Where do you live?
I referred to the AAP because I made a faulty assumption that you were american. Sorry. So I’ll rephrase my question: what evidence did you use to design a superior immunization schedule to the one consensus science recommends for your country? I’m not asking you to repeat it all, just to cite your sources.
It’s not “questioning” if you never pay attention to the answer.
What you’re describing is the nominally adult version of the preschooler’s continual “why?” It’s not a question, it’s a power play to take over the conversation.
What you’re describing sounds a lot more like oppositional defiant disorder, where it doesn’t matter what the “authority” says, the subject knows it must be wrong. Exercise? Gotta be bad for you. Limiting sugar? Sugar must be good. Salt? Salts must cure everything. Etc.
“Amy, where did I say that “they” (obstetricians or medical staff?) could not be trusted because two companies produce such machines? If you will note, I said the COMPANIES would love to see these machines attached to every woman and baby”
It makes no difference. You inserted a non sequitur into the discussion for exactly the reason I described: “If they want to do THIS, you simply can’t trust anything they say.”
# BillyJoe – regarding second opinions
I would say that our approach to second opinions is very similar. Not sure if your post is in response to mine (second opinion etiquette) or anothers.
Within my framework the “second opinion” could be more of a tentative switch in doctors. I was thinking of a situation I had once. There were mis-communications between the doctor, nurse (who relayed test results and procedures to me) and I. I also had my doubts on the doctor recommendations, when I understood them. Looking online, it seemed like many patients with the same condition were receiving more testing before drugs or procedures were recommended.
I did met with the other specialist in the office (due to insurance) with the intent that I may or may not switch. Sometimes a different person can explain something in a different way and things become more clear. It seemed the communication would be better with the second doctor but overall his recommendation would be the same (like you mentioned in your post).
I was in the rare situation that declining treatment would not negatively effect my health, so that is what I did. Six months later I found I had auto-immune thyroid inflammation. This might have been revealed if the doctors did more testing or maybe not. Auto-immune diseases being quite funky things.
Other reasons I can see for seeking a second opinion could be as follows.
To clarify a difficult diagnoses or get a fresh set of eyes on a ongoing problem (like having a proofreader). I have heard about this being advantageous in long term or undiagnosed illnesses.
To investigate a different approach (certain surgeons have different methods to correct a problem, with different advantages or disadvantages). Some surgeons specialize in a particular, newer, less invasive procedure.
When you suspect that you doctor’s recommendations might be out of the norm or there are serious disadvantages to a procedure that he/she is not revealing. I think in this case it would be better to leave the practice or go to another hospital for a second opinion so you are getting a different school of thought.
Again second opinions.
Just wanted to add. I often hear this rule “ALWAYS get a second opinion”. If you only seek medical care once every 5 years, that might work. Otherwise, I think that is incredibly impractical.
@ Zoe, “The wellness center you spoke of, at North County, is run by doctors turned administrators, I’m assuming.”
Your assumption is quite wrong. The center is run by women who have no training in health care or science. Actually, I’m not even sure that doctors run the hospital today.
Zoe, “If we’re going to villify doubt and glorify trust in doctors, then people could just as easily trust Dr. Weil, Chopra, Oz (etc etc etc), or the GP of mine who started selling herbal supplements. I don’t buy it. But you’re right, as a teacher and a liberal arts one at that, every bone in my body says “question and doubt” whether it is an authority or not. So I guess I’m biased.”
I agree that you are biased but I think it is against doctors because your mother, an NP, has had professional problems with them. I think your bias is apparent in your responses to Amy on other threads. Please note, I am not sure that this is true. There is no way that I can know that for sure. I just suspect that it is. And I suspect that it is similar personal biases that elicit such strong emotional responses to her blogs from others here.
A few of the reasons for my guess about you are that in the link to my webpage I never included the word “nurse”. I did write, “If only my doctor had done that, I wouldn’t be gray today.” On the introduction page http://www.rosemaryjacobs.com/ I wrote, “If my doctor had read the medical literature instead of the ads I wouldn’t look like this today.”
Yet despite this you state, “If we’re going to villify doubt and glorify trust in doctors, then people could just as easily trust Dr. Weil, Chopra, Oz (etc etc etc), or the GP of mine who started selling herbal supplements. I don’t buy it. But you’re right, as a teacher and a liberal arts one at that, every bone in my body says “question and doubt” whether it is an authority or not. So I guess I’m biased.”
I have most definitely stated that it was my naive doctor who disfigured me on the page I linked to and I never mentioned the word nurse there. I mentioned nurses in a comment here because it was nurses at what is usually considered an outstanding medical institution who were giving continuing ed credit for Gladstar’s classes and stating that they believed she was a reliable source of info on botanical drugs, something I didn’t know when I posted the article on the Wellness Center.
If you were to read all the material on my website, and I surely don’t expect you to do that, you would see that my one reference to a nurse was quite positive. She was the one, a nurse/nun/pharmacist who originally diagnosed me.
I believe that I have actually posted here about Weil noting that he he is setting himself up as the “wellness brand” just like Martha Stewart sets her self up as the “style brand”. (I’m not saying that very well. I think I said it better then.) While I don’t think you were reading the blogs when I posted that, you are now certainly assuming that I never criticize Weil or doctors which is most certainly not true.
I have also stated in a comment regarding your doctor selling supplements that I believe that should be illegal. That is another thing I’ve stated repeatedly on public forums. Yet you disregard all that and conclude that I am favoring MDs and being unfair to nurses while at the same time equating selling of what are usually inert supplements to the selling of the dangerous ones and the promotion of the idea that when scientific studies don’t demonstrate what we want them to that they must be wrong and should be disregarded.
The one message I try insistently to get out is, “Don’t believe the experts. Look at the evidence.” However, I include in that the entire body of evidence which includes expert experience and opinions.
I believe I’ve been accused of being overly sympathetic to Amy on another thread. (Not the right words which escape me now.) Well I guess that is correct. From her statement above it appears as if she has been forced to practice medicine with wacky people who reject science and reason and that she has been forced to try to alert unsuspecting pregnant women to the inaccuracies and dangers of what they preach while at the same time being personally attacked by educated rational people who are biased against her because she is an MD or for other personal reasons.
Statler, do you believe that doctors, midwives or nurses have the right to refuse to do procedures that they either find too risky or are uncomfortable doing because they feel they lack the requisite skills? Or do you think they should be required to do whatever patients want?
Micheleinmichigan, an aside about Gavin De Becker’s, Gift of Fear. I read it many years ago. If I remember correctly, he spoke there about a new social phenomenon in American society in which previously “well behaved” young ladies, American teenagers, started jumping and screaming at Sinatra’s concerts, something psychologists where trying hard to explain and coming up with theories about. I think they may even have given it a name.
A school friend used to say that her mother would tell a story about walking past a theater in NY as a teenager with a teenage friend. Someone working for Sinatra stood outside and gave them money, a dollar I think, to go in and jump and scream.
As I said, I’m not sure my details are correct, but when I read DeBecker I thought, I wish psychologists did more investigating and less theorizing.
The concept of endarkenment is incredibly depressing. So besides SBM and other science-based sites, how do we change the culture?
RE questioning authority/second opinions: I recently wrote about an experience with a medical person (an orthotist) who tried to coerce me into accepting inappropriate treatment for one of the Little Anthropologists. He tripped my BS alarm by making a colossal right/left type of mistake and then bringing me his notes when I pointed out the mistake. His notes clearly stated “Right.” The painfully obvious empirical reality is “Left,” and a cursory glance at my child confirmed that. He then bombarding me with appeals to authority, red herrings, straw men etc. rather than just answering my clarifying questions by providing evidence.
I sought a second opinion simply to have multiple independent lines of evidence for the proposed treatment, and found a far better treatment option. Supernova better. Supported by lots of peer-reviewed literature and clinical trials.
I vaccinate my kid and take her to mainstream medical doctors. But for my birth I chose a midwife.
Midwives have much lower rates of C section and lower rates of epidural use than ObGyns. They stay with you throughout the birth process. They know how to ease pain and guide the mother through labor. Some skilled ObGyns also know how to do this, and individually have low C section rates.
More recent example of empirically unsubstantiated–but still all too common-practices by ObGyns include routine epesiotomies, only recently shown in the NEJM to do no good, on the whole. And other studies have shown no benefit from denying a woman nutrition during labor.
To disparage an entire field of professionals without even citing data properly is unscientific and arrogant. And to do so without even defining the group you disparage, “natural childbirth’ is imprecise. What is ‘natural childbirth” according to your definition?
This attitude against midwifery and low level of intervention gets in the way of good care for women. I was lucky to give birth in what i feel is the optimal setting: a birth without drugs with a caregiver who was with me 24/7, who happened to be a midwife, and in a hospital setting in the case of emergency. If more obgyns accepted this system, i suspect the rate of c section in US would plummet from its exceedingly high rate near 30 percent. And fewer women would chose the probably less safe option of home birth, if they could get midwife care in a hospital. Something is clearly wrong with the ObGyn field.
Rosemary – “I believe I’ve been accused of being overly sympathetic to Amy on another thread. (Not the right words which escape me now.) Well I guess that is correct. From her statement above it appears as if she has been forced to practice medicine with wacky people who reject science and reason and that she has been forced to try to alert unsuspecting pregnant women to the inaccuracies and dangers of what they preach while at the same time being personally attacked by educated rational people who are biased against her because she is an MD or for other personal reasons.”
Hmmm, it seems that since Dr Tuteur started posting here that there’s been more misunderstandings between people who support SBM and are not actually that far apart on many issues (apart from our perspectives on Dr Tuteur). I’d suggest a lot of this has to do with the way Dr Tutuer communicates and treats any criticism as being hostile and considers those of us who question her as being supporters of woo. For my part, I’ve often agreed with you Rosemary and still do on many matters – apart from Dr Tutuer’s integrity in matters of SBM and communication.
No offense intended but if you’re going to get on people’s cases about being honest about our own biases and explanations of why we find Dr Tuteur’s blogs here problematic, then please at least acknowledge that “being overly sympathetic” is being biased! Apply the same terminology and standards to yourself please
My parents are doctors, I have no anti-doctor bias (quite the opposite). I DO expect better from women in science and medicine in regards to women’s health issues, and I acknowledge that this may be unfair. However, I’d find Dr Tutuer offensive and not actually promoting SBM if she was a man too. Clearly you believe Dr Tutuer has been victimized in some way. However, it’s not even clear that Dr Tutuer has even practiced medicine for a long time (her bios all seem to indicate she’s been teaching and that she left practicing when her children were born quite some time ago, of course she may simply have posted incomplete or inaccurate bios and that may not be the case…she never did clarify when it was brought up).
Really, I’m not surprised this has become mainly about Dr Tuteur’s personality because of the way she communicates, the way she has taken on an ideological and highly personalized position in so many of her posts, and the way she treats any questioning of her authority as being an attack on SBM. Add in the fact that she’s made more posts here in a week than most other contributers make in a couple of weeks and seems to relish any and all attention – and has become the queen of constructing strawmen and accusing supporters of SBM of being woo supporters – and it really starts to seem like she’s not actually interested in SBM but just into stirring up controversy to get attention.
Btw, from what I’ve read no one was actually criticizing Dr Tuteur for discussing the dangers of woo. My critique was of trying to pretend she’s presenting SBM when she’s not presenting all the science to be considered (she cherry picked in both the breech birth and circumcision threads) and does so in an emotionally charged way, and the way she communicates is tactically the same as the promoters of woo.
I should have been more clear- the wellness center is approved by the trustees of the hospital, of whom some are doctors.
Rosemary, I didn’t read your whole website, just the main page and the wellness page. I am solely responding to your comment about nurses in the first post here. I have no idea what your biases are or anything else, and I think you’re reading way too much into it my comments. I have merely noticed several negative comments about midwives, and liberals on this websites. I can’t really tell whether you think nursing as a field has a systemic problem with endorsing woo, at least moreso than doctors. It’s exactly like demeaning all midwives because of a few whackjobs.
My mother is a nursing supervisor and practitioner and well respected by the nurses under her, as well as the doctors with whom she works. She did teach me about being proactive about my health, however, in that she has, in 30 years of nursing, seen the occassional doctor screw up (as well as the occassional nurse). There has also been the occasional doctor (like, maybe two in 30 years)who thinks he is the boss of her, when doctors and nurses have separate management for a reason. So the politics of medicine goes.
The second statement was not even directed towards you- just a general observation. Again, I have not read most of your website and don’t know most of your story.
I see Dr. Tuteur has been succesful in linking not wanting an epidural to various kinds of extremist woo, from your statements. That’s too bad. I would have no problem with Dr. Tuteur if she would get her facts straight and be a bit more nuanced, but I appreciate the analysis of my psyche.
Also, the fact that Dr Tuteur seemingly can’t acknowledge the influence of commerce on medicine – particularly in the US – and she belittles any and all non-American professional associations in countries with public healthcare systems is also problematic. Generally speaking, the bloggers here are as critical of the corruption of SBM within medicine and the pharmaceutical industry as they are the attacks on medicine and science by the wizards of woo. They’re defending SBM and calling out non-SBM practices in general and not just taking a reactionary anti-CAM and pro-doctor/medicine stance. I seriously do think Dr Tuteur’s posts do more harm than good in promoting SBM (particularly since she seems to want to post so much that it may end up looking like the Amy Tuteur look-at-me bloggorama).
And, sorry, her breastfeeding post where she does actually acknowledge a bias seems more like damage control and image repair than a genuine acknowledgment of bias. It’s like she’s practicing cargo cult SBM blogging – with much waving of hands and ritual but no true understanding or content!
Pefect! That’s exactly the right description. Cargo cult SBM blogging.
I like to challenge conventional wisdom and even among people who are respectful of science based medicine, there is a lot of faulty conventional wisdom especially on any topic associated with mothering. Since challenging conventional wisdom on childbirth and breastfeeding threaten some women’s view of themselves as “good” mothers, I’ve learned to expect personal attacks.
I realize that some prefer discussing me and my style. I prefer to discuss the science.
Sometimes people seek a second opinion because they don’t like what they hear. A few years ago there was a basketball player that sought a second opinion from a cardiologist to allow him to play basketball. He dropped dead practicing shots. I forgot his name. It made the headlines.
Dr Tuteur – If you’d only been discussing the science from the start and not repeatedly brought other things into the conversation there’d be no conversation about you and your style, or the content of your posts (much of the discussion has been about the content, such as cherry picked science and how context informs content). Simply claiming you prefer to discuss the science when that’s very far from what you do is yet again an example of cargo cult blogging and after-the-fact image management. You want the appearance of being an SBM blogger (and the authority it gives you) without actually being an SBM blogger. This is why I feel the need to bring this up, you’re no different than anyone else who abuses science for their own ends.
Dr Tuteur – “I like to challenge conventional wisdom and even among people who are respectful of science based medicine,”
Yes and so do many other people who blog and comment here. Most of the bloggers here do that in a way that is actually about SBM and not just their desire to be controversial. (In fact, many seem to work to dampen false controversies and show how they’re not actually controversial, and not simply stir the pot regarding already controversial issues while adding little new to the conversation.)
Fifi said “it’s not even clear that Dr Tutuer has even practiced medicine for a long time (her bios all seem to indicate she’s been teaching and that she left practicing when her children were born quite some time ago,”
This confirms my opinion that Dr. Tuteur is being treated unfairly. There are two other SBM bloggers who have not practiced medicine for a long time. Why single Dr. Tuteur out?
Harriet – It’s not a value judgment, it’s about context and transparency. I’m responding to Rosemary who was proposing that Dr Tuteur has to deal with misinformed patients in clinical practice. There’s nothing wrong with being an academic, it’s just different than being a clinician. Just as being a GP is different than being a researcher, and practicing medicine 20 years ago is different than practicing it today. I can understand that you may feel some kinship and sympathy for Dr Tuteur because of the response to your own post regarding circumcision, and this may be informing your opinion about unfair treatment since you seemed to feel as if you were being unfairly treated when people critiqued your handling of the topic too.
Dear Dr. Tuteur:
Thank you so much for this post. I understand my daughter and her arguments in favor of home birthing and her preference for “organic” foods so much better now. It is really all about control, isn’t it? She believes that no one ought to tell her what to do or how to do it, especially those who are better educated, who, by virtue of that knowledge and training, make her feel inferior.
Fifi said “I’m responding to Rosemary who was proposing that Dr Tuteur has to deal with misinformed patients in clinical practice.”
“Has to deal” is not significantly different from “had to deal.”
“being a GP is different than being a researcher, and practicing medicine 20 years ago is different than practicing it today.”
I have been retired for 20 years now, yet no one has suggested that that has any impact on what I write. Just as no one has suggested that my lack of academic credentials, teaching or research experience constitutes a “difference” likely to influence what I write.
It constitutes unequal treatment to point out that Dr. Tuteur is no longer in clinical practice when no one has pointed out that Dr. Sampson and I have both been out of clinical practice for many years. And it shouldn’t matter: our writings should be judged on their content alone.
“As I said, I’m not sure my details are correct, but when I read DeBecker I thought, I wish psychologists did more investigating and less theorizing.”
I wish psychologists would all send me a dollar.
But seriously, I don’t recall that part, which is not surprising. Read it years ago. Generally I find psychology fascinating, not only for the theories and opportunity for self reflection, but also for how they go about experimenting with human behavior or senses.
IMO, yes, psychologist have come up with some fantastic failures, poorly planned studies, jumping to wrong conclusions based on little data. But I would not hazard to guess how they do in comparison to other fields.
@ StatlerWaldorf
“you wouldn’t by chance be feeling superior to all of us nitwits who don’t have medical degrees or PhD’s in science and yet dare to question medical authority? ”
Conveniently missing the point while proving the point. You are questioning authority as the default position (which against Dr. T appears to be rallying). Evaluate the claims, evaluate the evidence and reevaluate the claims. From there you are free to reject the particular authority. Questioning authority as the default position has always struck me as the child’s response to the cleverer friend first figuring out Santa wasn’t real.
End @ Statler
In any event, this concept of “authority” becomes ridiculous. Dr. T (for instance) has no remotely binding authority or influence over me or anyone else. That is just something a person may ascribe because *they feel* as if Dr. T is “imposing” or “forcing” something upon them (as if every statement is a direct attack – read “the four agreements” on how to stop this childish insecurity). In the sense of being an “expert” sure, the contributors here (and doctors everywhere) may be that, but there is this automatic and willfully blind attachment of this “control” and “imposition” to that knowledge that is *hardly* the case.
I, personally, view Dr. T (and all contributors here) as mere mortals (*gasp*) that happen to have a great deal of knowledge that I may benefit from. I continue to read this site because I value and trust their recommendations and input on topics. They have no meaningful concept of authority to apply. Anyone here can read elsewhere, do whatever and listen to whomever. It’s just silly when, as a scientific lay person, anyone comes on the board and hollers “Listen up doctors! You must validate my opinion or I will surely post here incessantly until you agree or give up!”
Having just read animal farm, it just tickles me to see this overt reaction to *anyone* offering *anything* about *any topic* as if you cave and agree for one microsecond, Napoleon will sweep you off your feet and enslave you to his will. Hysterical.
“It constitutes unequal treatment to point out that Dr. Tuteur is no longer in clinical practice when no one has pointed out that Dr. Sampson and I have both been out of clinical practice for many years.”
Hall’s and Sampson’s SBM profiles disclose their retired status. Tuteur’s profile does not. Unequal disclosure perhaps deserves unequal treatment.
EricG,
I think you’ve got something there. Authority can mean “the power to determine, adjudicate, or otherwise settle issues or disputes; jurisdiction; the right to control, command, or determine.” It can also mean “an accepted source of information, advice, etc.” or “an expert on a subject: He is an authority on baseball.” (From dictionary.com.) I suspect people aren’t distinguishing between the two kinds of authority when they say “I always question authority.”
If someone is an expert on a subject, a go-to person who knows more than most people about something, it would be prudent to question them so that you can learn, if you’re interested in their field.
If someone is drafting you into the military, it behooves you to ask a lot of questions about why that is happening and who that benefits.
These are different authorities and the questions are different.
[I understand my daughter and her arguments in favor of home birthing and her preference for “organic” foods so much better now. It is really all about control, isn’t it? She believes that no one ought to tell her what to do or how to do it, especially those who are better educated, who, by virtue of that knowledge and training, make her feel inferior.]
Maybe your daughter understands some things you don’t?
@lizkat on 29 Jan 2010 at 5:28 pm “Maybe your daughter understands some things you don’t?”
That is meaningless rhetoric. It’s like saying that a pedestrian always has a 50% chance of crossing the street safely because one either is hit by a car, or is not. In line with this, the likelihood that the daughter, as described, understands something special is small.
@Harriet Hall on 29 Jan 2010 at 4:23 pm “… our writings should be judged on their content alone.”
I have not followed Dr. Tuteur’s threads closely because they are mostly on topics which concern me very little. (Although I appreciated Harriet’s input, some years ago, when my local NPR station advocated home-birth.)
Back to the quote with which I opened: in my skimming of comments responding to Dr. Tuteur’s several posts, it seems to me that many are not substantive. I join Dr. Hall in hoping commenters will limit themselves to the subject at hand, rather than the person.
“It constitutes unequal treatment to point out that Dr. Tuteur is no longer in clinical practice when no one has pointed out that Dr. Sampson and I have both been out of clinical practice for many years. And it shouldn’t matter: our writings should be judged on their content alone.”
I actually agree with this ftmp. However, Dr. Tuteur DOES have some very shall we say old fashioned views about obstetrics. She edited out, for example, from the quote on the original “Journal of Consumer Research” article the part about lithotomy position no longer being common. Many OBs (most?) are just fine with delayed cord clamping (with active management), clear fluids in labor, intermittent EFM, and varied pushing positions, all of which Dr. Tuteur has spoken out against, only because midwives once practiced them.
I’m not sure about Dr. Sampson, but Dr. Hall has quite an impressive resume of her activities since retiring from medicine and very rarely makes factual errors. Dr. Tuteur has an internet blog and a few letters to the editor.
She’s also exhibit A for the mommy wars because she makes some moms feel like crap if they would prefer not to have a c-section, if possible She goes around on every single article pertaining to childbirth and accuses these moms of wanting to kill their babies because they care about the experience of birth. It’s really bizarre.
However, I do think she’s loads of fun and definitely thought-provoking. I just wish SBM had two OB viewpoints on here to provide some balance.
“the likelihood that the daughter, as described, understands something special is small.”
The extremely condescending attitude expressed toward the daughter leads me to imagine the mother may be judgmental and close-minded. Just a wild guess.
But aside from that, I want to express something about what it means to be a skeptic and why I am one. And why Dr. Tuteur’s post represents approximately the opposite of the ideal of skepticism.
This country was born out of defiance and disrespect. Its founders were cynical about human nature. They knew that even with the very best of intentions, human beings will take advantage of whatever power they have. And they don’t always have the best of intentions.
Human beings are all hypocrites — that’s because we all like to see ourselves in a good light, but we are all fallible. Therefore, we do not see ourselves clearly.
This post was basically a diatribe against defiance. The old-fashioned paternalistic (yes a woman can be paternalistic) doctor doesn’t want to see physicians losing the reverence they used to get. Patients were childlike and trusting, and many still are.
But not all. And trust is waning as people notice that mainstream medicine is only good for certain kinds of things, and that progress in certain areas just doesn’t seem to happen.
Yes maybe people are expecting miracles like antibiotics and the polio vaccine to come along and save us from the current dreaded diseases. Maybe they expect too much. But really, the lack of progress has been quite surprising.
The mainstream true believes deny any lack of progress and insist that cures are around the corner, any day now. And sometimes, like Dr. Tuteur, they see cancer as a sign of modern medicine’s great success.
Well anyway, we should respect everyone and distrust everyone, and always be defiant.
wales said “Hall’s and Sampson’s SBM profiles disclose their retired status. Tuteur’s profile does not. Unequal disclosure perhaps deserves unequal treatment.”
Perhaps not. Perhaps it reflects the author’s conviction that the information would be irrelevant.
I did not disclose how many years I had been retired because I thought that was irrelevant.
@Lizkat,
Somehow, “respect everyone and distrust everyone and always be defiant” sounds more like the position of a polite but cynical contrarian.
The information is not irrelevant to me. The retirement status disclosure appears on some of Tuteur’s websites and not others. I remain curious as to the rationale for the inconsistency.
I have already had this discussion on this site and received no answer then so I do not expect one now.
“The information is not irrelevant to me. The retirement status disclosure appears on some of Tuteur’s websites and not others. I remain curious as to the rationale for the inconsistency. ”
Well, then she’s hardly trying to hide it. Big deal.
“Well anyway, we should respect everyone and distrust everyone, and always be defiant.”
I agree with a lot of what you write. But I have to agree that this sounds more like a “polite contrarian” rather than a doubter or a skeptic. Why always be defiant?
lizKat
“The old-fashioned paternalistic…doctor doesn’t want to see physicians losing the reverence they used to get. Patients were childlike and trusting, and many still are.”
The “old-fashioned paternalistic doctor” is (hopefully and, I think, actually) a dying race.
The problem is that there are those who are trying desperately to swing the pendulum in the complete opposite direction. The patient rules. Well he does, but he’d better take some professional advice before he makes his decision.
“And trust is waning as people notice that mainstream medicine is only good for certain kinds of things, and that progress in certain areas just doesn’t seem to happen.”
Are you are referring to the pharmaceutical companies or doctors? And it begs the question about what, other than mainstream medicine (let me substitute SBM), is good for those things that SBM is not good for.
“Yes maybe people are expecting miracles like antibiotics and the polio vaccine to come along and save us from the current dreaded diseases. Maybe they expect too much. But really, the lack of progress has been quite surprising.”
Only because of unrealistic expectations driven by hyperbolic press reports. But, there is the odd “miracle” (I hate that word) like eliminating smallpox, nearly eliminating polio, measles, mumps, rubella, whooping cough, diptheria, tetanus, and more recently epiglottitis from the developed world (with even more progress if not for the activities of the ignorant anti-vaccination altmed crowd)
“The mainstream true believers deny any lack of progress and insist that cures are around the corner, any day now.”
Where are these “mainstream true believers” who “deny any lack of progress and insist that cures are around the corner”? Are you talking about patients fed on a diet of “breakthrough” and “miracle” by the media, or about the professionals at the coalface.
“Where are these “mainstream true believers” who “deny any lack of progress and insist that cures are around the corner”? Are you talking about patients fed on a diet of “breakthrough” and “miracle” by the media, or about the professionals at the coalface.”
It’s mainly the media, but researchers do tend to inflate the significance of findings in order to attract funding. And we all went through a very optimistic phase midway through the last century, when it looked as though even the magic bullet for cancer might be just around the corner. I can understand some public disappointment.
The glass is about half full, I would say. Once medical science finally got its act together a mere century or so ago it was inevitable that the easy problems and those with lower tech solutions such as antibiotics and vaccines and simple surgery and life support would be the first to be resolved.
That leaves us now with the more complicated and difficult diseases. We are making slow progress with most.
If the rapid transformation of HIV/AIDS from an invariably fatal condition to what is effectively a chronic disease is not a modern medical miracle then a don’t know what is.
Of course the role of defiant patients in making that happen is quite an important part of the story.
skepchickon
“Thank you so much for this post. I understand my daughter and her arguments in favor of home birthing and her preference for “organic” foods so much better now. It is really all about control, isn’t it?”
#v Lizcat
“The extremely condescending attitude expressed toward the daughter leads me to imagine the mother may be judgmental and close-minded. Just a wild guess.”
Yes, I got the same impression. Sounded like a mom engaged a personal battle with her daughter to me. Maybe trying to understand the daughter’s point of view, rather than trying to figure out what’s wrong with her could be more productive from a family relationship standpoint.
Regarding organic food. I have seen commenters criticize it a few times in some of the SBM blogs. Never with any evidence to support their criticism (the is not to deny evidence may exist). People buy organic food for a lot of reasons. Some are environmental, some perception of safety, some are avoiding particular elements more common in non-organic food (a particular preservative, coloring or wax that disagrees with them).
Me, I buy organic milk because I don’t like the idea of antibiotics being used injudiciously to promote growth and milk production. I am concerned about antibiotic resistances. I buy organic grapes because in our grocery store the organic ones taste a lot better and cost a buck more per/pack. I buy vegetarian chicken eggs because I like eggs and they are slightly lower in cholesterol. Also the practice of feeding ground up chickens to other chickens is pretty yucky by itself and from an infectious disease standpoint, I understand. I buy certain bands of organic cereal because they have less sugar AND they are cheaper. I don’t think that’s wacky or automatically rebelling against establishment, authority, whatever.
I do not have the time to research every grocery store decision indepth (although, if I stopped following SBM, I might). There is a lot of guesswork. I’d welcome a reasoned science based discussion on whether I’m correct or incorrect.
For one thing I realize that the “organic” label is poorly regulated. On the other had, I have a friend who works as a microbiologist in food and livestock inspection and I can tell you that is not a well oiled machine either. There are pro and cons.
In conclusion, from a SBM advocacy position, I wonder if people could see a more production way to persuade patients when CAM is not the best route for them. I think that various observations on the flaws of CAM “types” (they are just anti-establishment, they are ODD, or controlling or insecure) may more alienating than convincing.
From my point of view all people have strengths and weakness. But, all have many things we can agree on. If persuasion is the goal, maybe it is better to start with common goals and move toward solutions, than to criticize.
But, hey, this is something I fail at all the time. So who am I to say.
“Yes maybe people are expecting miracles like antibiotics and the polio vaccine to come along and save us from the current dreaded diseases. Maybe they expect too much. But really, the lack of progress has been quite surprising.”
What I find amazing is the lack of knowledge about the progress made in medicine and the jaded attitude that greets each astounding development with a yawn.
In my professional lifetime alone the following occurred, were developed or were brought into widespread use:
Surgery
laparascopic surgery which has entirely revolutionized both gynecology and general surgery
stereotactic radiosurgery which has revolutionized neurology and neurosurgery
relatively routine use of liver transplants and heart transplants
arthroscopy
Radiology
MRI scans
PET scans
widespread use of ultrasound
Oncology
Stem cell transplantation
Targeted chemotherapy such as herceptin
preventive treatment for cancer such as tamoxifen
OB-GYN
pushing back the frontier of viablity by several weeks
surfactant therapy for hyaline membrane disease of prematurity
in vitro fertilization
non surgical alternatives to hysterectomy
identification and treatment of HPV to prevent cervical cancer
Cardiology
balloon angioplasty instead of triple bypass
ECMO (extracorporeal membrane oxygenation)
artificial hearts
Psychiatry
Prozac and other SSRIs that have revolutionized the treatment of depression and anxiety
Immunology
vaccine against H. flu
vaccine against meningiococcal meningitis
That’s 20 that I thought of off the top of my head. What’s particularly notable about these recent developments is that they do more than simply extend lifespan, they have dramatically reduced the risks, the pain, and the length of hospital stay for surgery, they have allowed for earlier diagnosis and more successful treatment of cancer, and they have improved quality of life for people suffering from psychiatric disease.
And almost all of them are so commonplace that they are not recognized for the miracles that they are.
Oh, and in the same time frame, “alternative” medicine has developed nothing and saved no one.
Amy is a true true believer. The major breakthroughs were antibiotics, vaccines, anesthesia, surgical technology. We all know and we are impressed. Since then, the reputation of mainstream medicine has largely been coasting on past success. According to some experts anyway, some of the worst diseases are as deadly as ever. But it depends on your perspective and if you are unable to look objectively at the evidence — which is massive and confusing (and I am a statistician, so my confusion is not the result of ignorance) and none of us has time to assimilate more than a fraction — if you insist on seeing it one way, then no one can ever change your mind, not even the tiniest tiny bit.
But anyway …
“If the rapid transformation of HIV/AIDS from an invariably fatal condition to what is effectively a chronic disease is not a modern medical miracle then a don’t know what is.”
That is the public relations spin churned out by the big drug companies. Please don’t start yelling that I’m an AIDS denier. I am not. But I am VERY skeptical about long-term use of those AR drugs. AZT, for example, is on a list of carcinogenic substances in the state of California. And I could tell you lots more about those drugs, but I won’t. When you read the reports, check where they’re coming from. And look at varied sources. Some of it is pretty darn horrifying. (No, don’t bother with the AIDS denier web sites).
People should be a bit more skeptical about any information that comes bleating out of the big drug industry.
“Prozac and other SSRIs that have revolutionized the treatment of depression and anxiety”
Chemical lobotomies.
“Chemical lobotomies.”
Prejudice against those with psychiatric disabilities is always fashionable, not to mention the denial that psychiatric illnesses are disease every bit as real as other illnesses. Add a healthy dollop of self righteousness and you have the incredibly ignorant statement above.
# lizkaton 30 Jan 2010 at 11:57 am
“Prozac and other SSRIs that have revolutionized the treatment of depression and anxiety”
“Chemical lobotomies.”
OMG – appalling
Oh my. I am extremely offended by the characterization of people who take SSRIs as having “chemical lobotomies.”
Try “able to live a normal life because of modern medicine.”
lizkat
“Chemical lobotomies.”
That’s such a simultaneously ridiculous and unkind thing to say that you appear to be a troll. (Maybe you are Amy Tuteur trying to make herself look good. Hm, lizkat, maybe the World Trade Centre was attacked by Bush and the CIA, whattaya think?)
That is the public relations spin churned out by the big drug companies.
++++++++++
No, that is the experience of millions of people on ARVs around the world. Check out the work of Partners in Health in Haiti and Rwanda, for examples. Talk to people at the sharp end of the AIDS crisis in the US, such as those who’ve come together in organizations such as ACT-UP. While it is important to reduce the toxicity of drugs, sometimes it is better to take a life-saving drug with side-effects than not to take it. That is true of ARVs and HAART.
My point was that the speedy development of treatments for HIV/AIDS (and indeed, the modifications to therapies to reduce side-effects) was very powerfully influced by the ‘patient defiance’ and refusal to accept medical authority that is being slammed in this post. The medical authorities also contended that ARVs were not cost-effective in poor countries, and medical mavericks have had to unite with ‘defiant patients’ in order to challenge this orthodoxy.
Dr Tuteur – “Prejudice against those with psychiatric disabilities is always fashionable, not to mention the denial that psychiatric illnesses are disease every bit as real as other illnesses.”
That’s a bit of a strawman you’re erecting since the prejudice being shown is against SSRIs and not people with mental illness. One cannot make sweeping statements about psychiatric drugs or conditions either pro or con, it’s highly unscientific! To be clear, I fully support the use of drugs as one approach to treating mental illness and mood disorders when appropriate. However, something such as depression isn’t always as simple as it being just a physical illness – being a mental disease it’s also psychological, and it can also be social/environmental. This means that approaches that incorporate treating the whole person – mind, body and context/environment – can be incredibly effective. CBT has been shown to be very effective at curing certain disorders, for instance.
There are very legitimate questions to be asked about SSRIs and best treatment for depression, and this is a much debated topic amongst experts. The best evidence shows that SSRIs alone don’t seem to be much better than placebos for treating depression (and recent discoveries regarding the biological aspects of anxiety and depression seem to indicate that SSRIs actually work on the part of the brain related to anxiety and not depression, the older and out of patent depression medications seem to be more effective for depression, even if they have more unwelcome side effects). There’s still a lot of research to be done regarding the relative effectiveness of various pharmaceutical interventions for mild to moderate depression versus or in conjunction with talk or behavioral therapies.
Considering the way the drug companies fudged research around SSRIs and heavily promoted them to GPs to prescribe (who aren’t really qualified to diagnose psychiatric illnesses unless they have additional training in psychiatry or psychology), it’s not surprising there’s a lot of mistrust about SSRIs and very legitimate questions regarding their effectiveness.
Obviously SSRIs are not a “chemical lobotomy” and that’s as sensationalist as screaming about dead babies. However, they’re also a drug that is controversial and not fully understood (which is partially because we still don’t fully understand neurobiology). Psychiatry, psychology and neurobiology are still really in their infancy in many ways – this is one area of medicine where making absolutist statements is simply ignorant and arrogant. Either side trying to use mental illness to promote an agenda or ideological position is being exploitative and not actually discussing SBM.
Chemical lobotomies. Maybe it’s really Tom Cruise.
Reading Dr. Tuteur’s list makes me wonder what percentage of medical research dollars goes into first world diseases/ injuries and what percentage goes into third world diseases (like malaria or yellow fever). I have no idea.
I understand very well that some people need SSRIs just to function. I understand that there is such a thing as serious permanent mental illness that can result in complete disability. I am not trying to be insensitive to those who are afflicted with mental illness, which is a real tragedy for the patients and their relatives.
But glowing statements about the wonderfulness of these drugs are just not called for.
Psychiatrists and neurologists understand very little about how the brain works or how and why it malfunctions. They noticed that low serotonin correlates with certain conditions, such as depression, and they figured out a way to increase serotonin levels in the brain.
This does NOT result in a cure, merely some relief from symptoms. People on SSRIs are not mentally healthy, from what I have heard, just anesthetized.
I very strongly disapprove of the use of these drugs for anyone who is not disabled by mental illness. We don’t even know the long-term consequences.
And the fact that children are given these drugs, and others such as ritalin, is heartbreaking.
“While it is important to reduce the toxicity of drugs, sometimes it is better to take a life-saving drug with side-effects than not to take it. That is true of ARVs and HAART.”
This is a matter of opinion. You will see very different evidence depending on where you look. It is all massively confusing and there are no simple answers. The drugs are causing many deaths and diseases. Many. Exactly how much is hard to tell. And long-term effects are not known.
If HAART can extend a person’s life by 4 years, is it worth the “side effects?” And we don’t know, on average, how much life is extended. As I said, it’s hard to tell with all the drug company spin mixed into most reports.
The drugs interfere with the functioning of cells, all the cells of the body. One lovely result can be early aging — VERY early aging. Like people in their 40s with the health of someone in their 80s.
You won’t take my word, of course. Check it out. Be skeptical.
lizkat, I won’t take your word for it because I have indeed already “checked it out” as part of my training and continue to follow the unfolding science of HIV treatment. Apart from the fact that ARVs improve quality of life, and allow adults who have been on the brink of death to have a productive life, you are way, way off with your estimate of 4 years increase in life expectancy. Perhaps you need to ‘check it out’.
ARVs massively reduce vertical transmission of HIV from mother to child. Preventing vertical transmission doesn’t merely increase a baby’s lifespan, but give the possibility of a whole lifetime.
I’m always skeptical about drug company spin, but clearly, it is you who has no idea what you are talking about.
No, go ahead, tell us lizkat. We’re all waiting with bated breath.
As for this:
Citation, please?
lizkat, can I recommend that you spend time here
http://www.treatmentactiongroup.org/index.aspx
Here you will find sensible discussion of the issues of drug toxicity, premature ageing in people living with HIV/AIDS and many other questions, from an organization that is independent of – and often highly critical of – drug companies.
“Here you will find sensible discussion of the issues of drug toxicity”
So how is this different from what I said?
“Many of the best available ARV regimens, which include at least three different drugs taken together, cause distressing side effects. Some drugs can trigger life-threatening health problems that require expert medical care.”
Just try to find any clear reports of how the typical AIDS patient on HAART is doing. You will find lots of breathless raving about the wonders of these treatments. You will also find creative theories about why so many AIDS patients die from non-AIDS diseases. Like, because the drugs have saved their lives, and now they are living so long they are getting cancer and heart disease. The kind of theory you would expect to hear from Dr. Tuteur, for example.
Drugs that can kill HIV must be highly toxic, to all the cells of the body. Antibiotics, also, are toxic. But one difference is that antibiotics are only taken until the infection is gone, while ARVs never get rid of the infection and must be taken for life.
And, of course, patients become resistant to certain drugs and may have to keep switching.
The big drug companies would love to have you think that AIDS is now merely a chronic condition and AIDS patients can live relatively normal lives.
No, it isn’t true. I am not accusing the drug companies of being completely unethical scoundrels. But the AIDS drugs are the perfect way to make gazillions of dollars. Maybe just a happy coincidence.
lizkat – “Psychiatrists and neurologists understand very little about how the brain works or how and why it malfunctions.’
We actually understand more and more every day. It’s remarkable what we’ve learned about neurobiology and cognition in the lasts 30 odd years. The issue with mental illness is that it’s not purely about objective markers but also subjective ones, it’s about a person having an experience (a bad experience or one that disrupts their ability to function). Mental illness and health aren’t just about the brain but also the mind, it means that we can approach treating many forms of mental illness from a variety of angles – including mental, physical and environmental/social/culture.
The issue of over or mis-prescribing medications is a big one in regards to mental health, and obviously pharmaceutical companies play a part in this (as do a very overburdened mental health systems). However, that doesn’t mean that drugs are bad, just that pharmaceutical companies like to sell as many drugs as possible and are willing to do so by promoting pseudoscience. Once again, this is an area where it’s very important to distinguish between true SBM and cargo cult science posing as SBM. A belief that mental illness is only biological and has only biological causes isn’t actually being scientific and it’s trying to provide a simplistic answer to a complex area where there is still much research to be done and quite a bit of controversy.
So how is this different from what I said?
++++++++++
Because they don’t therefore conclude that the treatment is worse than the disease.
And a chronic condition is never ‘merely’ a chronic condition.
Where did I claim that it was? Oh, I didn’t. Nevermind.
In the US a particularly issue is with what health insurers will cover regarding treatments for mental health problems and mental disease. Often a few visits with a psychiatrist will be covered but not full courses of CBT or talk therapy. In Canada, a big problem is with an overburdened mental health system and a lack of psychiatrists or psychologists who work on medicare. And, of course, there are issues with societal prejudices as well.
Plonit – Thanks for the great link. And, yes, activism has played a very big role in moving AIDS research forward.
Lizkat – Do you actually know people living with AIDS or who died of AIDS? The drug side effects aren’t worse than dying of AIDS related complications. If you’d ever taken care of someone with AIDS and accompanied them as they died, or celebrated a birthday with someone who is still here because of the advances in medication – I suspect you wouldn’t be using this as a platform. It’s not perfect, and it’s not a cure or a vaccine, but the drugs are allowing people to live longer and better than before.
Zoe237 said “Dr. Hall has quite an impressive resume of her activities since retiring from medicine”
I never wrote a word until 2003. In 2003 my resume was nonexistent. Does this mean my writing in 2003 should have been discounted? At which point in the subsequent years did I become a credible writer?
Dr. Tuteur’s writing should be judged solely on its content, not on number of things in her resume.
wales said “The information [about retired status] is not irrelevant to me.
What is relevant to you and why? Isn’t the number of years I have been retired relevant? Why did you not criticize me for not disclosing that? Why is any of this relevant? Why do you need to know anything about the author to judge the quality of what she writes?
lizkat,
I started my internship when the first AIDS cases were described and their life expectancy and quality of life was, to put it mildly, very short and lousy. I have patients now that are doing fine over ten years after their first case of PCP pneumonia. Could we do better? Of course we could and we will.
Regarding SSRIs, I have few patients on them chronically. In most cases I have been able to taper them off after the patient has been in remission for about 9 months.
Transparency about one’s experience is relevant if one is setting oneself up as an authority on SBM – particularly if the content and style of the person’s posts seems to contradict their claims to be based in SBM. If there’s no transparency, you’re asking people to operate on faith. Trust is earned, faith isn’t. Since Dr Tuteur has herself brought up issues such as how hard it is to talk to practice obstetrics in the current climate, and at least given the impression she’s a practicing doctor to some readers here and that’s influenced at least one reader’s perspective, then when she last practiced becomes relevant. If Dr Tuteur had not brought up these issues herself and personalized her perspective and the discussion, then it wouldn’t be being discussed here.
Harriet Hall – “Why do you need to know anything about the author to judge the quality of what she writes?”
What an odd question when we’re talking about science! When discussing SBM and scientific studies, who publishes what and their affiliations and potential biases are very important to be transparent about. If Dr Tuteur wants to present herself as a credible authority on SBM and obstetrics then some basic transparency about her current and past experience isn’t an extraordinary request. She’s not being asked to reveal details about her personal life but merely to be transparent about her professional experience and affiliations since she used them as a starting point for some of her arguments and defenses of certain points.
“they don’t therefore conclude that the treatment is worse than the disease.”
I did NOT conclude that. I said it is very hard to find information that is clear and unbiased. A lot of research is correlational and therefore hard to interpret. And drug RCTs often compare new drugs to older drugs, and there are seldom any comparisons between drugs and no drugs (for ethical reasons they must provide treatment, but the result is a shortage of controlled research).
In any case, whether it’s better to have the drugs or not, either way it’s bad, very bad. The best advice is to avoid getting AIDS, if possible. Because there is no cure and there is no safe treatment, in spite of what the drug companies’ PR says.
And by the way, the AIDS/HIV deniers are just as crazed as the pro-drug screamers. So I am skeptical of both.
“When discussing SBM and scientific studies, who publishes what and their affiliations and potential biases are very important to be transparent about. ”
Good point.
pro-drug screamers
+++++++++
Who or what is a “pro-drug screamer”? I’m for prevention, but I don’t counterpose treatment and prevention. No one who campaigns for better access to existing drug treatments, and development of better drug treatments, is opposed to prevention. In fact, those who campaign for greater and more effective prevention efforts are often the exact same people who campaign for increased access to treatment.
I said “While it is important to reduce the toxicity of drugs, sometimes it is better to take a life-saving drug with side-effects than not to take it. That is true of ARVs and HAART.”
You replied “This is a matter of opinion.” Which I took to mean that you disagreed with the above statement. That maybe the treatment is worse than the disease. Well, that is your opinion, but you are wrong.
“The drug side effects aren’t worse than dying of AIDS related complications.”
“the drugs are allowing people to live longer and better than before.”
Yes of course that’s what the big druggos are telling us. But it’s very hard to know without controlled comparisons. If AIDS mortality has decreased somewhat, it would be unscientific to jump to the conclusion that it’s because of the drugs. There could be other explanations. Any evidence that seems to show advantages of HAART is immediately grabbed by the drug companies as absolute proof. And of course people want to believe it, so it spreads like wildfire through the mainstream press.
big druggos?
name and shame, please.
[Who or what is a “pro-drug screamer”?]
There are people who are screaming that anyone who does not recommend HAART for AIDS patients (even HIV patients, sometimes) is a murderer. They demand that every patient in the world be put on HAART, no matter what it costs.
Ok, the expense would not be a concern if we were talking about a proven health-restoring treatment. But it isn’t. At least I am far from being convinced that it is.
“If Dr Tuteur wants to present herself as a credible authority on SBM and obstetrics then some basic transparency about her current and past experience isn’t an extraordinary request.”
Oh, please. Your motivation in attempting to discredit me personally is pathetically obvious. My credentials are rock solid; but perhaps you think that Dr. Novella and Dr. Gorski are incapable of running their blog properly and need you to advise them.
What bothers you about my posts is that the ARE based on the scientific evidence. You’ve been totally stymied in discredting the science and find it much easier to smear me.
Every time people resort to such childish tactics, it confirms that you are not capable of debating the science.
It is rather ironic that some of you are questioning my credentials. I’ll put my credentials up against yours any day of the week. Indeed, what qualifies you to pass judgment on my professional accomplishments beyond your wish to derail debates that you cannot win?
Zoe237 said “Dr. Hall has quite an impressive resume of her activities since retiring from medicine”
HH: “I never wrote a word until 2003. In 2003 my resume was nonexistent. Does this mean my writing in 2003 should have been discounted? At which point in the subsequent years did I become a credible writer?
Dr. Tuteur’s writing should be judged solely on its content, not on number of things in her resume.”
I agree in theory, but she often uses anecdotes and appeal to authority in her arguments, so it becomes relevant. She also often uses present tense when talking about “counseling” patients rather than “counseled.” Not a big difference to the reader, but it’s rather odd.
Why are there no non-doctors/scientists posting blogs on this website? Obviously resume matters somewhat.
Regardless, I have no problem with people with who no longer practice writing opinions, and she’s not hiding it, so no problem there either. I merely was speculating about WHY she holds views that are contrary to the American College of Obstetrics and Gynecology, given that she hasn’t practiced in almost 20 years.
Unbelievable. You seriously know nothing.
Go read the research studies (there are plenty of RCTs demonstrating benefit).
Go talk to people living with HIV/AIDS whose health has dramatically improved as a result of these treatments.
There are plenty of treatments in the world of marginal benefit – with massive NNT and needing huge RCTs to demonstrate any statistically significant benefit and having questionable clinical significance. Drug therapies for HIV/AIDS are not in this category. If you don’t accept that it is a proven health-restoring treatment, well, that’s your choice. But it doesn’t change the fact that it is.
That last comment was addressed to lizkat.
“I agree in theory, but she often uses anecdotes and appeal to authority in her arguments, so it becomes relevant. ”
Anecdotes help to drive the point home. I have not observed her to use the appeal to authority. Do you have any instances?
“If Dr Tuteur wants to present herself as a credible authority”
SBM focuses on science and evidence. We do not ask you to believe what we say because we are authorities.
“she holds views that are contrary to the American College of Obstetrics and Gynecology”
Really? Please enumerate them. Otherwise that’s merely another smear attempt.
“That’s a bit of a strawman you’re erecting since the prejudice being shown is against SSRIs and not people with mental illness.”
Actually the statement suggests that someone on SSRIs have had chemical lobotomies. In essence, they are happy zombies.
I have taken SSRI’s and family member’s who taken that and other psychiatric medication. I found the statement sickingly lacking in understanding and compassion. Not to mention perpetuating the myths that undermine the adequate support of mental illness.
To anyone who chooses those words and thinks saying ‘I’m not trying to be insensitive’ is in any way adequate…FU
You think SSRI’s are bad, try Thorazine, That’s a REALLY bad one. On the other hand you could watch you brother rip apart the house because he can’t figure out the pattern to the stereo, or your sister have to lock herself in the bathroom with your baby nephew because the same brother thinks she is trying to rip out the baby’s stomache when she is actually tickling him. Or find out he broke your dad’s rib because he was thought dad was trying to control his brain. Or you can watch your mother just cry and cry and cry. I wouldn’t recommend it.
Yeah, Thorazine is really bad, but maybe better than being kicked out of the halfway house because you beat an old man senseless (for once again trying to control your brain) and then sobbing “I don’t want to be like this”, or ending up in the hospital for drinking drano.
SSRI’s? How about a SSRI, anti-seizure, mood stabilizer cocktail? That’s gotta be bad. Well in my world it seems good, because a beloved family member (not my brother) who was diagnosed with BiPolar ended up in the hospital almost dead twice in one month on a overdose of alcohol and pain meds during a manic episode. And you know what. They are not like someone who has had a lobotomy. In fact they are a highly successful and charming academic with whose intellect and compassion exceeds Lizcat’s infinitely.
As for me, when I reached a point in my life when I didn’t have good days and bad days, I only had days full of despair or days full of apathy and I was lucky to get 3 hours of sleep at night, I found SSRI helpful (sure not a miracle, the side effects listed in the bag are pretty accurate). This didn’t make me obliviously happy, it only gave me the capability to be happy and gave me a break from the constant negative ruminating that I was experiencing. This helped me be more successful in the CBT and exercise program I undertook.
FiFi, I usually agree with your posts and I do agree that SSRI are not to be taken lightly, The fact that some GP don’t adequately inform or supervise is one of my complaints. But I think you totally missed on Lizcats comment.
This automatic demonizing of psychiatric drugs and trivializing of the victims can only discourage adequate research and public mental health funding.
And was a cheap shot to score a point totally at the expense of me and my family.
I’ve seen lizkat use the appeal to authority.
We do not ask you to believe what we say because we are authorities.
++++++++++++
Ermmm, isn’t that what this post is all about?
“This automatic demonizing of psychiatric drugs and trivializing of the victims ”
When I said the drugs are a chemical lobotomy I meant that they fill a similar purpose — controlling violent or manic patients, dulling intense negative emotions, etc. Yes of course it is much better than actual lobotomies! I don’t know if lobotomies even had the desired effect, and they were a barbaric and permanent “treatment.” But it was better than chains or straightjackets.
Mental illness is a terrible problem. My point was that modern medicine has not succeeded in understanding or curing it. The drugs treat the symptoms only.
Yes if someone is clinically depressed there is a risk of suicide and they need anti-depressants. If someone is psychotic they need to be tranquilized.
My argument was in no way an attack on mentally ill people or their families! I don’t understand how you got that message. If I am attacking anyone it’s the drug companies, who market psychiatric drugs to the general public, including children.
I’m sure we all know people with non-clinical depression who prefer to take a pill than correct the things in their life that might be making them depressed. Speaking of lifestyle, physical inactivity is a probable cause of some cases of depression. And of course there are many other possible causes.
I am in no way trying to trivialize the victims of mental illness. I know people who would have wound up in a mental hospital without SSRIs.
“Go talk to people living with HIV/AIDS whose health has dramatically improved as a result of these treatments.”
I would very much like to read case studies that illustrate this. I could not find any. I would appreciate links if you have them.
“But it was better than chains or straightjackets.”
I should have said some people thought it was better. I really don’t know. Either way it was bad.
“People on SSRIs are not mentally healthy, from what I have heard, just anesthetized.”
Ok, now you can hear different!
I owe the following facts to my SSRI:
- I am alive.
- I work full-time and can support myself and another person.
- I am alive.
- I am in love.
- I am alive.
- I am going naked swimming tonight at a university athletic complex with the urban naturist society.
- I am alive.
I took Paxil for a while. I hated it. I didn’t feel depressed exactly, but I didn’t feel anything. Paxil is an SSRI, and I did feel anesthetised on it. So… I stopped taking it. I take Zoloft now, which is also an SSRI. I feel lots of things. Sometimes I feel depressed, though not suicidal. I do not feel anesthetised.
I’ve never been a particularly anxious person, but people I know who are anxious and also depressed have taken Paxil and just loved it. It gave them their lives back. Apparently different SSRIs can be appropriate for different people.
I’m not the epitome of mental health, but if I were I wouldn’t be taking psychiatric meds. SSRIs are not a panacea, but without them I wouldn’t be getting all I do out of life, or giving back.
It’s true that some of the older drugs are more effective antidepressants than SSRIs. They are also less safe, so are not prescribed first because the balance of risk and benefit is not there. If someone responds well to an SSRI, why prescribe something less safe? If someone has tried three SSRIs and is still quite ill, the treating physician may try some of the older, riskier drugs. Like one of the ones my beloved takes.
Yes, it would be better to not be mentally ill than to take psychiatric drugs. It would also be better not to be HIV positive than to have to take ARVs. But if you are mentally ill, or if you are HIV positive, then having access to effective medication is a huge benefit.
The tricyclic antidepressants are probably more effective than the SSRIs. Before the SSRIs came out, TCA overdose was a common admission to the ICU. It’s difficult to OD on an SSRI, that fact alone has saved lives and money.
This is just a small pilot study with no control group, but it’s an example of how difficult it is for skeptics like myself to find any clear evidence for the claims that HAART prolongs life and improves health.
http://linkinghub.elsevier.com/retrieve/pii/S08853924000024515
“This pilot study sought to measure the impact of HAART treatments on a wide range of clinical outcomes and psychological variables in a sample of patients with advanced HIV infection.”
“Seventy patients with advanced AIDS who were protease inhibitor naïve were started on HAART regimens.”
” In addition to standard clinical and laboratory markers, a series of observer-rated and self-report instruments were used to measure various physical and psychological factors (e.g., pain and symptom distress, psychological well-being, depression). Data were collected at baseline and after 1 and 3 months of HAART therapy.”
“As expected, the CD4 count increased and viral load levels decreased significantly over the 3-month study period.”
“In addition, patients improved significantly in body weight, and serum albumin and ferritin levels.”
“The only psychosocial measure that improved significantly with treatment was depression.”
“Ratings of pain intensity, physical and psychological symptom distress, and overall quality of life did not change.”
” treatment failure (mortality and intolerance) were not uncommon in this sample (40%).”
——————-
So according to this study anyway, HAART did not do wonders for these advanced AIDS patients. CD4 went up and HIV went down — that always happens with HAART. But is the assumption warranted that these factors are valid indicators of recovery from AIDS?
The patients improved in body weight — maybe weight gain is a side effect of some of the drugs? And in depression ratings — that could easily be a placebo effect. There was no control group so we don’t know.
More importantly, quality of life ratings and subjective health did not improve.
And there was a 40% rate of treatment failure.
So how effective is HAART really? We can’t tell from this abstract, that’s for sure.
I have read many reports and abstracts on HAART and they all find HIV going down and CD4 going up. It is taken for granted that this means success. But does it really? How can we know. This abstract shows that you can have decreasing HIV and increasing CD4 even though NO real health benefit has been demonstrated.
So that’s just one. Please correct me if you know of studies that contradict this one.
And, as I said, HIV and CD4 levels always do what they’re supposed to. But does that mean what it’s supposed to mean?
As someone taking psychiatric medicine I can say I am NOT anesthetized I’m able to live a life like I never could before.
I am ALIVE because of these medications and without them I would be dead.
That isn’t rhetoric it’s the truth. I have bipolar disorder and I was diagnosed when I was taken to the hospital after a suicide attempt.
Before finding the medication that worked for me I was a mess, I had panic attacks, I couldn’t hold down a job, I hated myself and my life. So much so I tried to take my own life.
Now, I have a job I like and I get good reviews at. I held the same job before that for four years, something I’d never done before in my life. I’m in a relationship and most I like myself.
And lizcat my medicine hasn’t taken away negative emotions or any kind of emotions. I still get sad, I still get mad, I still struggle with many issues.
Right now I’m trying to control the rage I feel at what you are saying. You know NOTHING about mental illness and to talk like that it’s just… I can barely see straight when you are saying these things.
My medicine has set me free. It’s not a mental straight jacket or chains.
Of course, I’m sure you’ll say that I’m mis reading what you said or I’m just in the thrall of the pharmaceutical companies but that’s your problem.
“And there was a 40% rate of treatment failure.”
That means 60% success rate. The treatment failure rate used to be 100% when I started practice.
“she holds views that are contrary to the American College of Obstetrics and Gynecology”
“Really? Please enumerate them. Otherwise that’s merely another smear attempt.”
I did, but I will again. Breech delivery (ACOG for in very strict instances), circumcision (ACOG against routine), the importance of breastfeeding (ACOG recommended) CEFM (intermittent is fine in low risk), NPO during labor (liquids now allowed). Your positions are those of an OB from the ’80s, when you did your training.
I’m not sure about their position on midwives and childbirth without pain medication, but I doubt they’re against either. Not sure the position on cesareans either, but there is a great deal of effort worldwide to lower the 30-70% rate.
http://www.informaworld.com/smpp/content~content=a910768432~db=all~jumptype=rss
“Objective. To examine changes in individuals’ experiences of symptoms over the first six months of taking highly active anti-retroviral therapy (HAART) and to assess the impact of symptom experiences and attributions on adherence to HAART. ”
“Overall, the number of HIV or HAART-related symptoms reported did not change significantly over follow-up.”
So overall patients did not experience any improvement in 6 months of HAART. This study was done last year.
“I’m sure we all know people with non-clinical depression who prefer to take a pill than correct the things in their life that might be making them depressed. ”
Sure there are people like that. But guess what? The pill will do squat for them.
[“And there was a 40% rate of treatment failure.”
That means 60% success rate. The treatment failure rate used to be 100% when I started practice.]
The 40% failure occurred within the time frame of the study. It might have been 100% eventually, we don’t know. And since HAART does not cure AIDS or eradicate HIV, as we do all know, the ultimate failure rate is 100%. When you started to practice and the AIDS death rate was 100%, how long did it take for patients to die on average, after diagnosis of HIV?
Because the mainstream consensus is, as far as I know, that it can take 10 years or more.
So you can see, I hope, that it is difficult for anyone to make sense of this. The death rate was 100%, but could take 10 or more years.
And now the death rate is still 100%, but HAART hasn’t been around long enough to know how much it increases time.
It seems to me that the claims for HAART go beyond the evidence, and we skeptics are supposed to base our opinions on evidence. Especially on RCTs. Where are the conclusive RCTS showing the effectiveness of HAART?
We already know that AZT was not a success, supposedly because of resistance. Now we are supposed to agree that HAART has succeeded where AZT failed. But if we are skeptics we should ask for hard evidence before we are convinced.
“Breech delivery (ACOG for in very strict instances), circumcision (ACOG against routine), the importance of breastfeeding (ACOG recommended) CEFM (intermittent is fine in low risk), NPO during labor (liquids now allowed).”
Wrong, wrong, wrong, wrong and wrong. You’re batting zero. Here’s what you need to do: find the specific ACOG recommendations, then find EXACTLY what I wrote. Show us the comparison. Unless you can make the specific comparisons, and you cannot, you have not proved your claim.
All right, since the thread is swerving off-topic anyway…
I’m on SSRI’s due to a year so horrible that I hope it is the worst one I ever see. It never occurred to me that “a pill” would make it better, but when a friend kindly suggested that maybe my chronic nausea and malaise might be due to reactive depression, my doctor agreed. It made my burdens this last year survivable. It wasn’t that i wasn’t willing to “work” on my problems–the very severe problems happened to people I love. So please hold off on the judgement–there are stories that you don’t know.
Amy said, “It makes no difference. You inserted a non sequitur into the discussion for exactly the reason I described: “If they want to do THIS, you simply can’t trust anything they say.””
Yes, it does make a difference. You are putting words down that I didn’t say. You just can’t get past your bias when dealing with my comment.
——————————————————————————-
Alison Cummins, I’m Canadian originally but have been living in Europe, Middle East and Asia over the past decade. I’ve tried reading original studies on vaccines but I don’t understand enough. I’ve moved to secondary reviews of literature in books. For example, Sears “The Vaccine Book” has given me info on areas of concern in vaccine research and has given details of vaccine ingredients. I have considered some points of concern, like aluminium content etc. and tried to be conservative about my approach while still vaccinating. I realize that some people disagree with Sears interpretation of research on aluminium, but I don’t have knowledge to critique all the critiques. I just go ahead and vaccinate with lower-aluminium vaccines and spread them out. Decisions about vaccination has been stressful for me as a parent, because I’m doing something to protect them from diseases, but yet I don’t want to harm them either!
“When I said the drugs are a chemical lobotomy I meant that they fill a similar purpose — controlling violent or manic patients, dulling intense negative emotions, etc.”
Another bit of misinformation. A SSRI’s will do nothing to control a violent or manic patient. In fact, when starting SSRI medication, there is some risk it will trigger a manic episode in a person who has bipolar disorder. This can be very dangerous for that patient. That is one of the reasons for judicious monitoring.
micheleinmichigan makes a good point. Because I was misdiagnosed with depression (because with my bipolar disorder i have more depressive episodes than hypo-manic or manic episodes).
My doctors gave me SSRIs. Which caused me to be come hypo-manic, and then I would feel so great I would stop taking my medcine (and seeing the doctor) and then I would “crash” with horrible depressions. Which led me back to the doctor and then I went back to the doctor, who would try another anti depressant.
What ultimately happened is that I became manic, the worst mania of my life, and then the worst depression which led me to attempt suicide.
I was taking a mood stabilizer and an anti psychotic. Right now I only take the anti psychotic. Not because I’m psychotic but it keeps my mind quiet. I’ve gone from a mind racing at 100 miles an hour, with the mental noise like multiple tvs, radios, and trying to read two different books and carry on a conversation all at the same time.
I’m not saying I had audio hallucinations, but I had about 5 different track of thoughts all going on at the same time.
For anyone interested in a more scientifically based assessment of the usefulness of HAART in treating HIV/AIDS, I suggest the following article by Nancy Wongvipat, M.P.H.
http://www.thebody.com/content/treat/art4826.html
She comments:
“HAART stands for Highly Active AntiRetroviral (anti-HIV) Therapy. The first HAART treatments, in 1996, included a protease inhibitor along with two nucleoside analog drugs to fight HIV. Now HAART means any potent combination of three or more anti-HIV drugs.”
“Just a few years after HAART became widely available, studies reported 60% to 80% reductions in new AIDS illnesses, hospitalizations and deaths. Because of HAART, many people with HIV/AIDS are living longer, more productive and more normal lives. Successful HAART can change HIV disease from an illness that was almost always a death sentence into a chronic (long-term), but usually manageable condition.”
Of course, HAART is not a panacaea or even or a cure.
“Drug side effects can be difficult to live with and sometimes quite serious over the long term. For these reasons, some experts recommend delaying treatment until it is necessary to prevent serious damage to the immune system. However, for many people, HAART has been a lifesaver.”
For a quick look at the annual incidence of new AIDS cases and deaths, the following link has a nice graph.
http://www.avert.org/usa-statistics.htm
I note that annual HIV/AIDS cases peaked at 80,000 in 1993 and have now dropped below 40,000. Deaths from AIDS peaked at 50,000 about 1994-1995. From 1995 to 1997, AIDS deaths dropped from 50,000 to about 20,000 and they have continued to drop to about 15,000 per year.
It may only be post hoc ergo propter hoc, but that’s a pretty impressive coincidence.
The CDC says there were 1,051,875 total diagnosed cases of AIDS through 2007. 583,298 people diagnosed with AIDS had died, so 468,577 people diagnosed with AIDS were still alive as of 2007.
There may have been other factors that contributed to the reduction in deaths but if anyone wishes to assert that they had an effect that was even a useful fraction of the benefit of HAART, it is incumbent on them to define what factor they think helped. A good reference and some useful numbers would be a major plus.
I started as an intern at the start of the HIV epidemic.
The longer I have been in practice, the longer AIDS patients have lived. I have only had two AIDS deaths this century.
Therefore, it is not the HAART, its me.
Me: “Breech delivery (ACOG for in very strict instances), circumcision (ACOG against routine), the importance of breastfeeding (ACOG recommended) CEFM (intermittent is fine in low risk), NPO during labor (liquids now allowed).”
Dr. Tuteur: “Wrong, wrong, wrong, wrong and wrong. You’re batting zero. Here’s what you need to do: find the specific ACOG recommendations, then find EXACTLY what I wrote. Show us the comparison. Unless you can make the specific comparisons, and you cannot, you have not proved your claim.”
Me: Are you saying I’m wrong about the ACOG positions or your positions? It’s possible that I’ve misinterpreted you. ACOG is pretty clear though.
BREASTFEEDING
Dr. Tuteur: “As a clinician, though, I need to be mindful not to counsel patients based on my personal preferences, but rather based on the scientific evidence. While breastfeeding has indisputable advantages, the medical advantages are quite small. Many current efforts to promote breastfeeding, while well meaning, overstate the benefits of breastfeeding and distorts the risks of not breastfeeding, particularly in regard to longterm benefits.”
http://www.sciencebasedmedicine.org/?p=3096
ACOG Committee Opinion No. 361 (2007): Breastfeeding: maternal and infant aspects.
“Evidence continues to mount regarding the value of breastfeeding for both women and their infants. The American College of Obstetricians and Gynecologists strongly supports breastfeeding and calls on its Fellows, other health care professionals caring for women and their infants, hospitals, and employers to support women in choosing to breastfeed their infants. Obstetrician-gynecologists and other health care professionals caring for pregnant women should provide accurate information about breastfeeding to expectant mothers and be prepared to support them should any problems arise while breastfeeding.”
http://www.ncbi.nlm.nih.gov/pubmed/17267864\
__________________________________________________________________________________
EATING AND DRINKING IN LABOR
Dr. Tuteur: I doubt it, since it is an anesthesia complication, not a surgical complication. Similarly, the decision to make labor patients NPO comes from the anesthesiologists, not the obstetricians.
Dr. Tuteur: “Instead of claiming that the recommendation to remain NPO during labor is without any basis in science, you’ve acknowledged that there is scientific evidence on the topic and it shows that aspiration is a real risk.”
http://www.sciencebasedmedicine.org/?p=2975
ACOG (2009): “Washington, DC — Women in labor may be allowed to quench their thirst with more than just the standard allowance of ice chips, according to a new Committee Opinion released today from The American College of Obstetricians and Gynecologists (ACOG) and published in the September issue of Obstetrics & Gynecology. Although the guidelines on prohibiting solid food while in labor or before scheduled cesarean surgery remain the same, ACOG says that women with uncomplicated labor, as well as uncomplicated patients undergoing a planned cesarean, may drink modest amounts of clear liquids during labor if they wish. “
“According to ACOG, women with a normal, uncomplicated labor may drink modest amounts of clear liquids such as water, fruit juice without pulp, carbonated beverages, clear tea, black coffee, and sports drinks.”
http://www.acog.org/from_home/publications/press_releases/nr08-21-09-2.cfm
American Society of Anesthesiologists: “Oral intake of modest amounts of clear liquids may be allowed for uncomplicated laboring patients”
http://www.guideline.gov/summary/summary.aspx?doc_id=10807&nbr=005632&string=breech
American Society of Anesthesiologists Task Force on Obstetric Anesthesia. Practice guidelines for obstetric anesthesia: an updated report by the American Society of Anesthesiologists Task Force on Obstetric Anesthesia. Anesthesiology 2007 Apr;106(4):843-63.
CIRCUMCISION
Dr. Tuteur: “Imagine if we could save lives from a dread and often fatal disease simply by performing a minor surgical procedure. People would hail this simple victory and rush to adopt it… Not exactly. The disease is HIV and the simple surgical procedure is circumcision and anti-circ activists oppose it under almost any circumstances.”
http://www.sciencebasedmedicine.org/?p=3310
ACOG Committee Opinion. Circumcision. Number 260, October 2001.
American College of Obstetricians and Gynecologists. Committee on Obstetric Practice.
ACOG: “The American College of Obstetricians and Gynecologists supports the current position of the American Academy of Pediatrics that finds the existing evidence insufficient to recommend routine neonatal circumcision. Given this circumstance, parents should be given accurate and impartial information to help them make an informed decision. There is ample evidence that newborns circumcised without analgesia experience pain and stress. If circumcision is performed, analgesia should be provided.”
http://www.ncbi.nlm.nih.gov/pubmed/11592271
AAP: “Evidence regarding the relationship of circumcision to STD in general is complex and conflicting.13107-110 Studies suggest that circumcised males may be less at risk for syphilis than are uncircumcised males.107,111 In addition, there is a substantial body of evidence that links noncircumcision in men with risk for HIV infection.19112-114 Genital ulcers related to STD may increase susceptibility to HIV in both circumcised and uncircumcised men, but uncircumcised status is independently associated with the risk for HIV infection in several studies.115-117 There does appear to be a plausible biologic explanation for this association in that the mucous surface of the uncircumcised penis allows for viral attachment to lymphoid cells at or near the surface of the mucous membrane, as well as an increased likelihood of minor abrasions resulting in increased HIV access to target tissues. However, behavioral factors appear to be far more important risk factors in the acquisition of HIV infection than circumcision status. “
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;103/3/686
CONTINUOUS EXTERNAL FETAL HR MONITORING (cEFM)
Dr. Tuteur: “Indeed, the Cochrane review you linked to is about comparing EFM with intermittent auscultation (either using a doppler or a fetoscope). The protocol for auscultation is quite rigorous and requires one on one nursing care for the bulk of labor. That is simply not possible in today’s economic climate.”
Dr. Tuteur: “The issue has more to do with the nature of the methods than anything else. EFM has a very low false negative rate and a high false positive rate. Intermittent auscultation has a high false negative rate and a high false positive rate, is profoundly dependent on attendant and technique and provides no permanent record for later analysis.”
Dr. Tuteur: “On the other hand, homebirth midwives, who by their very nature provide 1 on 1 care, and use intermittent auscultation (supposedly rigorously) have a dramatically higher rate of intrapartum death. “
Dr. Tuteur: “It is far too late to abandon EFM. It is both the medical and the legal standard. What we need is a better method of evaluating fetal oxygenation.”
http://www.sciencebasedmedicine.org/?p=2507
“Intermittent auscultation rather than continuous EFM has been associated with a decrease
in cesarean delivery rates. Obstetric practitioners may use intermittent auscultation rather than continuous EFM.”
http://images.ibsys.com/2005/0504/4450560.pdf
American College of Obstetricians and Gynecologists. Task Force on Cesarean Delivery
Rates.
Evaluation of cesarean delivery, 2000
ACOG (2009): “The false-positive rate of electronic fetal monitoring (EFM) for predicting cerebral palsy is high, at greater than 99%.
The use of EFM is associated with an increased rate of both vacuum and forceps operative vaginal delivery, and cesarean delivery for abnormal fetal heart rate (FHR) patterns or acidosis or both.
When the FHR tracing includes recurrent variable decelerations, amnioinfusion to relieve umbilical cord compression should be considered.
Pulse oximetry has not been demonstrated to be a clinically useful test in evaluating fetal status. …
The following conclusions are based on limited or inconsistent scientific evidence (Level B):
There is high interobserver and intraobserver variability in interpretation of FHR tracing. …
Reinterpretation of the FHR tracing, especially if the neonatal outcome is known, may not be reliable…. The labor of women with high-risk conditions should be monitored with continuous FHR monitoring. ”
http://www.guidelines.gov/summary/summary.aspx?ss=15&doc_id=14885&nbr=7371
American College of Obstetricians and Gynecologists (ACOG). Intrapartum fetal heart rate monitoring: nomenclature, interpretation, and general management principles. Washington (DC): American College of Obstetricians and Gynecologists (ACOG); 2009 Jul. 11 p. (ACOG practice bulletin; no. 106). [49 references]
http://www.ncbi.nlm.nih.gov/pubmed/19546798?dopt=Abstract
CESAREAN SECTION
Dr. Tuteur: “You haven’t explained how ANY C-sections that turn out to be unnecessary in retrospect can be eliminated, let alone all of them.”
Dr. Tuteur: “There are only two choices available: unnecessary C-sections or preventable neonatal deaths. Which do you prefer?”
Dr. Tuteur: “Everybody knows too many unnecessary (in retrospect) C-sections are being done. No one knows in advance which ones they are. Until C-section activists can offer a reliable method for predicting which C-sections are necessary in advance (a method with a low false positive rate and a low false negative rate) they bring nothing useful to the table. One really has to wonder whether they want to solve the problem, or merely complain about it.”
http://www.sciencebasedmedicine.org/?p=2507
“The increase in cesarean delivery rates in the United States has concerned
the American College of Obstetricians and Gynecologists (ACOG) and other
interested organizations for the past few decades. In 1994, ACOG issued a
policy statement on this topic, and in 1995, ACOG’s Health Care
Commission held a focus session to determine ways to review and reduce
cesarean delivery rates.
The expert working group proposes the following cesarean delivery rate
benchmarks:
1. Nulliparous women at 37 weeks of gestation or greater with singleton
fetuses with vertex presentations: The national 1996 cesarean
delivery rate for this group was 17.9%; the expert working
group goal at the 25th percentile for this group is 15.5%.”
http://images.ibsys.com/2005/0504/4450560.pdf
American College of Obstetricians and Gynecologists. Task Force on Cesarean Delivery
Rates.
Evaluation of cesarean delivery, 2000
BREECH
Dr. Tuteur: “That is something altogether different than claiming that the recommendation for C-section to deliver a breech baby is not based on the scientific evidence.”
Dr. Tuteur: “I present evidence that various obstetric recommendations (like C-section for breech) are based on the scientific evidence.”
Dr. Tuteur: “Really? The C-section rate for breech in the US approaches 100% and ACOG recommends C-section as the preferred mode of delivery for breech.”
Dr. Tuteur: “The SGOC does not speak for obstetricians in any other country besides Canada, and it’s not clear that it even speaks for them. Their recommendations are new, and have not yet been tested in practice, and it isn’t even clear that obstetricians will follow them….In the US, C-section is still the standard recommendation for breech delivery for the reasons that I have discussed.”
ACOG (2006): “Planned vaginal delivery of a term singleton breech fetus may be reasonable under hospital-specific protocol guidelines for both eligibility and labor management.”
http://www.ncbi.nlm.nih.gov/pubmed/16816088
Obstet Gynecol. 2006 Jul;108(1):235-7.
ACOG Committee Opinion No. 340. Mode of term singleton breech delivery.
Me: (this recommendation has been changed as of 2006. From 2001-2006, after the TBT and before other trials, the recommendation was for breech delivery by c-section.)
Okay, trying this again without the links since my first post disappeared (it’s a duplicate, sans links).
Me: “Breech delivery (ACOG for in very strict instances), circumcision (ACOG against routine), the importance of breastfeeding (ACOG recommended) CEFM (intermittent is fine in low risk), NPO during labor (liquids now allowed).”
Dr. Tuteur: “Wrong, wrong, wrong, wrong and wrong. You’re batting zero. Here’s what you need to do: find the specific ACOG recommendations, then find EXACTLY what I wrote. Show us the comparison. Unless you can make the specific comparisons, and you cannot, you have not proved your claim.”
Me: Are you saying I’m wrong about the ACOG positions or your positions? It’s possible that I’ve misinterpreted you. ACOG is pretty clear though.
BREASTFEEDING
Dr. Tuteur: “As a clinician, though, I need to be mindful not to counsel patients based on my personal preferences, but rather based on the scientific evidence. While breastfeeding has indisputable advantages, the medical advantages are quite small. Many current efforts to promote breastfeeding, while well meaning, overstate the benefits of breastfeeding and distorts the risks of not breastfeeding, particularly in regard to longterm benefits.”
ACOG Committee Opinion No. 361 (2007): Breastfeeding: maternal and infant aspects.
“Evidence continues to mount regarding the value of breastfeeding for both women and their infants. The American College of Obstetricians and Gynecologists strongly supports breastfeeding and calls on its Fellows, other health care professionals caring for women and their infants, hospitals, and employers to support women in choosing to breastfeed their infants. Obstetrician-gynecologists and other health care professionals caring for pregnant women should provide accurate information about breastfeeding to expectant mothers and be prepared to support them should any problems arise while breastfeeding.”
__________________________________________________________________________________
EATING AND DRINKING IN LABOR
Dr. Tuteur: I doubt it, since it is an anesthesia complication, not a surgical complication. Similarly, the decision to make labor patients NPO comes from the anesthesiologists, not the obstetricians.
Dr. Tuteur: “Instead of claiming that the recommendation to remain NPO during labor is without any basis in science, you’ve acknowledged that there is scientific evidence on the topic and it shows that aspiration is a real risk.”
ACOG (2009): “Washington, DC — Women in labor may be allowed to quench their thirst with more than just the standard allowance of ice chips, according to a new Committee Opinion released today from The American College of Obstetricians and Gynecologists (ACOG) and published in the September issue of Obstetrics & Gynecology. Although the guidelines on prohibiting solid food while in labor or before scheduled cesarean surgery remain the same, ACOG says that women with uncomplicated labor, as well as uncomplicated patients undergoing a planned cesarean, may drink modest amounts of clear liquids during labor if they wish. “
“According to ACOG, women with a normal, uncomplicated labor may drink modest amounts of clear liquids such as water, fruit juice without pulp, carbonated beverages, clear tea, black coffee, and sports drinks.”
American Society of Anesthesiologists: “Oral intake of modest amounts of clear liquids may be allowed for uncomplicated laboring patients”
American Society of Anesthesiologists Task Force on Obstetric Anesthesia. Practice guidelines for obstetric anesthesia: an updated report by the American Society of Anesthesiologists Task Force on Obstetric Anesthesia. Anesthesiology 2007 Apr;106(4):843-63.
CIRCUMCISION
Dr. Tuteur: “Imagine if we could save lives from a dread and often fatal disease simply by performing a minor surgical procedure. People would hail this simple victory and rush to adopt it… Not exactly. The disease is HIV and the simple surgical procedure is circumcision and anti-circ activists oppose it under almost any circumstances.”
ACOG Committee Opinion. Circumcision. Number 260, October 2001.
American College of Obstetricians and Gynecologists. Committee on Obstetric Practice.
ACOG: “The American College of Obstetricians and Gynecologists supports the current position of the American Academy of Pediatrics that finds the existing evidence insufficient to recommend routine neonatal circumcision. Given this circumstance, parents should be given accurate and impartial information to help them make an informed decision. There is ample evidence that newborns circumcised without analgesia experience pain and stress. If circumcision is performed, analgesia should be provided.”
AAP: “Evidence regarding the relationship of circumcision to STD in general is complex and conflicting.13107-110 Studies suggest that circumcised males may be less at risk for syphilis than are uncircumcised males.107,111 In addition, there is a substantial body of evidence that links noncircumcision in men with risk for HIV infection.19112-114 Genital ulcers related to STD may increase susceptibility to HIV in both circumcised and uncircumcised men, but uncircumcised status is independently associated with the risk for HIV infection in several studies.115-117 There does appear to be a plausible biologic explanation for this association in that the mucous surface of the uncircumcised penis allows for viral attachment to lymphoid cells at or near the surface of the mucous membrane, as well as an increased likelihood of minor abrasions resulting in increased HIV access to target tissues. However, behavioral factors appear to be far more important risk factors in the acquisition of HIV infection than circumcision status. “
CONTINUOUS EXTERNAL FETAL HR MONITORING (cEFM)
Dr. Tuteur: “Indeed, the Cochrane review you linked to is about comparing EFM with intermittent auscultation (either using a doppler or a fetoscope). The protocol for auscultation is quite rigorous and requires one on one nursing care for the bulk of labor. That is simply not possible in today’s economic climate.”
Dr. Tuteur: “The issue has more to do with the nature of the methods than anything else. EFM has a very low false negative rate and a high false positive rate. Intermittent auscultation has a high false negative rate and a high false positive rate, is profoundly dependent on attendant and technique and provides no permanent record for later analysis.”
Dr. Tuteur: “On the other hand, homebirth midwives, who by their very nature provide 1 on 1 care, and use intermittent auscultation (supposedly rigorously) have a dramatically higher rate of intrapartum death. “
Dr. Tuteur: “It is far too late to abandon EFM. It is both the medical and the legal standard. What we need is a better method of evaluating fetal oxygenation.”
“Intermittent auscultation rather than continuous EFM has been associated with a decrease
in cesarean delivery rates. Obstetric practitioners may use intermittent auscultation rather than continuous EFM.”
American College of Obstetricians and Gynecologists. Task Force on Cesarean Delivery
Rates.
Evaluation of cesarean delivery, 2000
ACOG (2009): “The false-positive rate of electronic fetal monitoring (EFM) for predicting cerebral palsy is high, at greater than 99%.
The use of EFM is associated with an increased rate of both vacuum and forceps operative vaginal delivery, and cesarean delivery for abnormal fetal heart rate (FHR) patterns or acidosis or both.
When the FHR tracing includes recurrent variable decelerations, amnioinfusion to relieve umbilical cord compression should be considered.
Pulse oximetry has not been demonstrated to be a clinically useful test in evaluating fetal status. …
The following conclusions are based on limited or inconsistent scientific evidence (Level B):
There is high interobserver and intraobserver variability in interpretation of FHR tracing. …
Reinterpretation of the FHR tracing, especially if the neonatal outcome is known, may not be reliable…. The labor of women with high-risk conditions should be monitored with continuous FHR monitoring. ”
American College of Obstetricians and Gynecologists (ACOG). Intrapartum fetal heart rate monitoring: nomenclature, interpretation, and general management principles. Washington (DC): American College of Obstetricians and Gynecologists (ACOG); 2009 Jul. 11 p. (ACOG practice bulletin; no. 106). [49 references]
CESAREAN SECTION
Dr. Tuteur: “You haven’t explained how ANY C-sections that turn out to be unnecessary in retrospect can be eliminated, let alone all of them.”
Dr. Tuteur: “There are only two choices available: unnecessary C-sections or preventable neonatal deaths. Which do you prefer?”
Dr. Tuteur: “Everybody knows too many unnecessary (in retrospect) C-sections are being done. No one knows in advance which ones they are. Until C-section activists can offer a reliable method for predicting which C-sections are necessary in advance (a method with a low false positive rate and a low false negative rate) they bring nothing useful to the table. One really has to wonder whether they want to solve the problem, or merely complain about it.”
“The increase in cesarean delivery rates in the United States has concerned
the American College of Obstetricians and Gynecologists (ACOG) and other
interested organizations for the past few decades. In 1994, ACOG issued a
policy statement on this topic, and in 1995, ACOG’s Health Care
Commission held a focus session to determine ways to review and reduce
cesarean delivery rates.
The expert working group proposes the following cesarean delivery rate
benchmarks:
1. Nulliparous women at 37 weeks of gestation or greater with singleton
fetuses with vertex presentations: The national 1996 cesarean
delivery rate for this group was 17.9%; the expert working
group goal at the 25th percentile for this group is 15.5%.”
American College of Obstetricians and Gynecologists. Task Force on Cesarean Delivery
Rates.
Evaluation of cesarean delivery, 2000
BREECH
Dr. Tuteur: “That is something altogether different than claiming that the recommendation for C-section to deliver a breech baby is not based on the scientific evidence.”
Dr. Tuteur: “I present evidence that various obstetric recommendations (like C-section for breech) are based on the scientific evidence.”
Dr. Tuteur: “Really? The C-section rate for breech in the US approaches 100% and ACOG recommends C-section as the preferred mode of delivery for breech.”
Dr. Tuteur: “The SGOC does not speak for obstetricians in any other country besides Canada, and it’s not clear that it even speaks for them. Their recommendations are new, and have not yet been tested in practice, and it isn’t even clear that obstetricians will follow them….In the US, C-section is still the standard recommendation for breech delivery for the reasons that I have discussed.”
ACOG (2006): “Planned vaginal delivery of a term singleton breech fetus may be reasonable under hospital-specific protocol guidelines for both eligibility and labor management.”
Obstet Gynecol. 2006 Jul;108(1):235-7.
ACOG Committee Opinion No. 340. Mode of term singleton breech delivery.
Me: (this recommendation has been changed as of 2006. From 2001-2006, after the TBT and before other trials, the recommendation was for breech delivery by c-section
Here are the links, in case anybody is interested.
BREASTFEEDING
http://www.sciencebasedmedicine.org/?p=3096
http://www.ncbi.nlm.nih.gov/pubmed/17267864\
NPO IN LABOR
http://www.sciencebasedmedicine.org/?p=2975
http://www.acog.org/from_home/publications/press_releases/nr08-21-09-2.cfm
http://www.guideline.gov/summary/summary.aspx?doc_id=10807&nbr=005632&string=breech
CIRCUMCISION
http://www.sciencebasedmedicine.org/?p=3310
http://www.ncbi.nlm.nih.gov/pubmed/11592271
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;103/3/686
cEFM
http://www.sciencebasedmedicine.org/?p=2507
http://images.ibsys.com/2005/0504/4450560.pdf
http://www.guidelines.gov/summary/summary.aspx?ss=15&doc_id=14885&nbr=7371
http://www.ncbi.nlm.nih.gov/pubmed/19546798?dopt=Abstract
CESAREAN SECTION
http://www.sciencebasedmedicine.org/?p=2507
http://images.ibsys.com/2005/0504/4450560.pdf
BREECH
http://www.ncbi.nlm.nih.gov/pubmed/16816088
http://www.sciencebasedmedicine.org/?p=3376
I would very much like to read case studies that illustrate this. I could not find any. I would appreciate links if you have them.
+++++++++++
http://www.impactaids.org.uk/lancet363.htm
How about this?
Look, we know that looking for the virus and CD4 counts are surrogate measures. However, the reason why those outcomes – rather than mortality or symptoms are used is because of the SUCCESS of ARTs.
When we had NO treatment, then the difference between the treated and the untreated was starkly obvious in a relatively short time (i.e. you didn’t need a particularly big study to show that those who were treated lived and those who were untreated died). So, treatment became the standard of care (at least in the rich world).
Now we are trying to see smaller differences between different drug regimes, different timing of initiation, and so surrogate endpoints are used. They may not be perfect, but since we are satisfied that HIV is the cause of AIDS, and the decline in CD4 levels is an important mechanism by which AIDS develops, these are reasonable surrogate endpoints. Obviously, for people who don’t believe that HIV is the cause of AIDS, these would be totally inappropriate endpoints – but then you are not one of these, right?
Of course, there is a scientific literature on this complex issue – some of which advocate making more use of observational studies. What they don’t say is “The Drugs Don’t Work”.
http://jac.oxfordjournals.org/cgi/reprint/47/4/371.pdf
michelleinmichigan – “FiFi, I usually agree with your posts and I do agree that SSRI are not to be taken lightly, The fact that some GP don’t adequately inform or supervise is one of my complaints. But I think you totally missed on Lizcats comment.”
I can see why you’d think that – what lizkat’s comment was quite offensive and insensitive, and propagandistic. That’s why I called her out on both using sensationalize language and discussed some of the real issues regarding mental health treatment and what we really do know and don’t know regarding SSRIs. However – referring to SSRIs as “chemical lobotomies” is actually talking about the drugs and not people. Even if there is the inference that people who take SSRIs have been lobotomized, that’s not what she actually said. I’m not standing up for lizkat or her ignorance here, I’m standing up for clarity of communication and not erecting strawmen (no matter how provocative and insensitive a statement may be).
As the ensuing discussion indicated, SSRIs aren’t a panacea or appropriate for all people or disorders. They’re extremely useful for some people but quite dangerous to prescribe for others. My main point was that drugs can be very useful in treating mental illness and mood disorders but the idea that all mental illness and mood disorders are purely biological and require pharmaceutical intervention is equally as ignorant as claiming all drugs are “chemical lobotomies” and can be treated pharmaceutically (or require a pharmaceutical solution when there are sometimes less invasive therapeutic solutions that actually provide lifetime relief, such as CBT and other forms of talk therapy). Mental illnesses and mood disorders are about the mind as well as the brain so treating the mind (and person) and not just the body can be a very productive approach. Sometimes in conjunction with medications, sometimes not. It’s also worth noting that all kinds of factors can contribute to or cause depression or anxiety – including purely biological factors such as a severe vitamin or mineral deficiency, being in a highly dysfunctional environment and trauma. What kind of therapy and treatments are the most productive is something that needs to be considered according to the individual. It’s also worth understanding that our brain chemistry isn’t always the root cause of a mental health issue but a response and that the body/mind connection goes in both directions. Neuroplasticity and how the mind shapes the brain and the brain shapes the mind – it’s all pretty mind blowing, amazing stuff!
“Look, we know that looking for the virus and CD4 counts are surrogate measures. However, the reason why those outcomes – rather than mortality or symptoms are used is because of the SUCCESS of ARTs.
When we had NO treatment, then the difference between the treated and the untreated was starkly obvious in a relatively short time (i.e. you didn’t need a particularly big study to show that those who were treated lived and those who were untreated died). So, treatment became the standard of care (at least in the rich world).”
My comment with links is “awaiting moderation” and has been for 16 hours. There are problems with what you are saying here. The surrogate measures are valid because you already KNOW they are valid? And you KNOW that ARTs are successful, without any RCTs? How?
When there was no treatment, people with HIV but no AIDS symptoms were not counted as AIDS patients. That is because HIV testing was less common. After HIV was determined to be the cause of AIDS, there was more HIV testing.
The percentage of AIDS patients who died might have been lower after there was treatment because more were diagnosed.
We really don’t know. And believing claims from the drug companies without RCTs is simply NOT science based medicine!
Too bad my links never showed up, because I thought they show that some skepticism may be warranted.
[equally as ignorant as claiming all drugs are “chemical lobotomies”]
You did not understand what I meant. The drugs do not cure mental illness. Dr. Tuteur’s comment strongly implied that now we have cures for mental illness. In fact, we have little or no understanding of mental illness and certainly do not have cures.
SSRIs cause the level of serotonin to rise, which may lessen the symptoms of certain mental illnesses, such as depression. The symptoms are merely dulled, the cause of the symptoms is not resolved.
And by the way, I never said SSRIs are for bipolar disorder or schizophrenia. In that comment I was talking about psychiatric drugs in general. When given to psychotic patients, they dull the symptoms, and also tranquilize and anesthetize.
The point is that psychiatric drugs do allow some patients to function who otherwise couldn’t, and they tranquilize some patients who would otherwise be out of control.
So they are using chemicals to dull the symptoms of mental illness and control violent or manic patients.
That was my point. The causes are mostly unknown, and there are no cures.
And SSRIs should NOT be given to people who are suffering from normal grief. You are messing with complex brain chemistry just to avoid the normal pains of life.
No one knows the long term effects. It is an especially stupid idea to give them to children whose brains are developing.
Zoe237,
Yes, just as I said, you are wrong about every single one, and you’ve demonstrated how you choose to twist what I write to what you wish to criticize.
Breastfeeding
ACOG:
“Evidence continues to mount regarding the value of breastfeeding for both women and their infants. The American College of Obstetricians and Gynecologists strongly supports breastfeeding and calls on its Fellows, other health care professionals caring for women and their infants, hospitals, and employers to support women in choosing to breastfeed their infants. ”
is completely consistent with
AT:
“As a mother, I am a passionate advocate of breastfeeding and I breastfed my four children. As a clinician, though, I need to be mindful not to counsel patients based on my personal preferences, but rather based on the scientific evidence. While breastfeeding has indisputable advantages, the medical advantages are quite small. ”
Eeating and Drinking in labor
AT:
“Instead of claiming that the recommendation to remain NPO during labor is without any basis in science, you’ve acknowledged that there is scientific evidence on the topic and it shows that aspiration is a real risk.”
Nothing in the multiple quotes you chose contradicts that. The existence of Mendelson’s syndrome is indisputable, the original decision to recommend NPO and any subsequent changes originate with anesthesiologists. Indeed any changes that have been made have occurred NOT because anyone thinks that Mendelson’s syndrome can’t happen, only because new anesthesiology techniques have reduced its incidence.
Circumcision
ACOG:
“The American College of Obstetricians and Gynecologists supports the current position of the American Academy of Pediatrics that finds the existing evidence insufficient to recommend routine neonatal circumcision.”
AT:
“I was never particularly supportive of routine neonatal circumcision for health reasons, but new data has challenged my old assumptions.”
cEFM
Nothing you quote from me is in any way contradicted by anything you quoted from any organization or paper.
C-section
Nothing you quoted from me is in any way contradicted by anything you quoted from anyone else.
The bottom line is that if you want to disagree with me, feel free to do so (be sure to bring some scientific evidence to the discussion), but don’t LIE about what I write because you’d prefer to address the lie rather than what I have said.
The irony is that my positions are mainstream within the obstetric community. I am just the kind of obstetrician that “natural” childbirth activists rail about, the ones who place the scientific evidence on safety ahead of the birth “experience.” If ACOG officials came here and read my posts they would agree with almost everything, and if anything, would probably feel that I wasn’t forceful enough.
If I represent anything at all, I represent the mainstream analysis of scientific evidence in obstetrics, so stop LYING about my positions, stop LYING claiming they contradict recommendations from obstetric societies, and stop your blatant attempts to SMEAR me because that’s easier than addressing the science.
lizkat,
You are perfectly illustrating my point. You know virtually nothing about ARVs or SSRIs but you reflexively oppose them because they are the standard of care.
“And you KNOW that ARTs are successful, without any RCTs? How?”
+++++++++++
I KNOW that ARTs are successful, BECAUSE of RCTs. Read what I wrote. The efficacy of ARTs was easily detected in RCTs comparing placebo/no treatment vs. treatment. That’s because the difference in outcomes were very large and obvious, with clinical endpoints (e.g. death).
And of course, having established that ARTs are sucessful (in RCTs) it would be unethical to have a control group receiving NO treatment. And that slightly complicates new RCTs, because they have to be very large or done over a long period to detect the kind of things we are interested in.
lizkat – The problem is that by using the term “chemical lobotomies”, you were indulging in extremist and sensationalistic language – in particular, a type of language that has a particular ideological and emotional content. If you didn’t mean to be insulting or purely anti-drug, it’s not a very effective way to communicate since it IS an anti-drug and insensitive thing to say.
There are legitimate discussion to be had around how specific drugs are prescribed and promoted, and about how the major drug companies can distort the scientific evidence. As well as what insurance companies will allow and disallow regarding treatments for mental illness or mood disorders in the US. Mental health is a complex subject and taking a purely anti or pro drug stance is naive and ideological.
Just because we don’t know everything about a condition or disease doesn’t mean we shouldn’t still try to alleviate suffering as best we can and using all the tools at our disposal. For some people, medications are not only useful but life saving. These really are decisions that need to be made on a case by case basis and sometimes it does take a while to find the most effective form of therapy for an individual. And, yes, there are some conditions that we don’t have a “cure” for yet (and maybe never will) – that’s just reality. Getting mad at medicine because of reality is a bit silly (though not uncommon). Expecting perfection from medicine or absolute knowledge is unrealistic. What we do need is more research around mental health issues. Certainly the fact that mental illness and mood disorders are disorders of the body and mind, and can have environmental/social causes, makes some people uneasy – particularly if they’re more comfortable in the realm of the purely physical and a bit at sea when it comes to discussing the psychological, social/environmental and subjective aspects of mental illness and mood disorders. There is a level of complexity regarding mental illness and mood disorders that simply doesn’t exist when discussing a broken arm. It is also a topic that tends to be quite emotional for a lot of people due to the social stigmas around mental health issues. It’s a topic where a little bit of compassion – love AND understanding – goes a long way. As does a bit of humility regarding grand claims either pro or against medications since neither is actually discussing the science or the actual issues discussed within the profession regarding best treatment.
No, they state exactly the opposite: the medical advantages of breastfeeding are significant (is that the opposite of “small?”).
No, you outright states that the recommendation is (not was) for NPO in labor. This is flat out false. But I agree that it’s because of better anesthetic techniques.
Yes, this demonstrates your conflicts perfectly. Unfortunately, ACOG and the AAP have not yet challenged THEIR own assumptions.
I guess we can let others decide on this one. There is TONS of research and committees going into preventing unnecessary c-sections for medical indications, and ACOG demonstrates that. In fact, much to my surprise, this is probably the single most controversial position you take- that there are only two choices, c-sections or neonatal death. Not to mention your support of elective cesareans (which you actually agree with ACOG, I believe). And I actually agree with you as well, but it is extremely controversial among even mainstream OBs.
I posted exactly what you said (thus the quotation marks) and exactly what ACOG says.
I agree with you about you agreeing with many mainstream OBs, certainly.
I posted at least seven scientific links, and have on multiple occassions in the past. You choose to ignore them and go off on some tangential strawman about natural childbirth advocates and homebirth midwives, in general.
Maybe another blog should do a “Dr. Tuteur and the assault on scientific evidence” post.
And don’t take it so personally. The midwives you posted about didn’t on the scientific assault thread. Sheesh. And what’s the big deal if you aren’t in 100% agreement with ACOG and the AAP on breastfeeding, circumcision, and cesarean section?
lizkat, there are links to hundreds of studies into the natural history of HIV/AIDS, and into the efficacy of treatments, available here
http://www.aidstruth.org
Go look at the RCT evidence for individual ARVs and for HAART. There is a particularly compelling RCT evidence on prophylactic treatment of aymptomatic HIV+ babies with HAART, showing differences in clinical outcomes (i.e. death)
Actually, lizkat, I’m finding it hard to figure out what your agenda is. Do you believe that HIV is not the cause of AIDS? Do you believe that use of ARVs does not reduce the incidence of AIDS-related symptoms and mortality?
I raised the case of HIV/AIDS because it is a field in which defiant patients who refused to accept that doctors know best have been crucial to the drive for new, better and more accessible treatments. I did not expect to get into a discussion about whether the drugs work.
FiFi:
Don’t need a lecture on psychiatric treatment from a layman. Thanks.
SBM Bloggers Suggestion Box:
One thing that would be great to see on SBM is a Psychiatrist or Social Worker who could write on modern Psychiatry, treatment, research. Even to get an occasion guest blogger in this field would be helpful.
There is a good deal of poor education and mis-perception regarding any psychiatric illness, mood, personality or anxiety disorder. There seems to be a good deal of misunderstanding of how treatment works.
Like a lot of complex and painful conditions, the SCAM, “Natural Lifestyle” and faith healer folks take advantage by telling victims they are causing their disease by not taking their supplements, eating their diet, exercising enough, believing in the right god enough, etc.
The sad thing is, because of their condition, many people with mental health issues may be more inclined to believe or even seek out the SCAMers than patients with other issues.
“And don’t take it so personally”
Don’t take deliberate character assassination personally?
Not only do I take it personally, but I believe I am owed an apology for your pathetic attempts to smear me. (“significant … is that the opposite of “small?”)
You can backpedal all you want, but you have made it quite clear, by your own writing, that you have deliberately and repeatedly distorted what I said.
I’m tired of the people who rail about my credentials, as if they were not rock solid, simply to derail an argument they are losing.
I’m tired of the people who insist that being retired disqualifies me from writing about medicine (but only me, not any other SBM blogger), simply to derail an argument they are losing.
Above all, I am tired of immature gratuitous insults (I’m thinking of you Alison, for your utterly inappropriate and bizarre accusation that I have created lizkat as an alternate identity and foil for my comments).
Stick to the science, drop the personal attacks, and above all, grow up!
I’m sorry Amy, no, I really didn’t think you’d made Lizcat up at all. I was trying (ineffectually) to make fun of her for being the utter personification of the irrational fringe conspiracy theorist you attack… the kind that thinks that the “druggos” invented AIDS and that probably believes that 9/11 was an inside job.
I apologize for not being clear.
micheleinmichigan – My intent wasn’t to lecture you, it was to discuss the complexity of mental health treatments. I apologize if you felt talked down to or if there was a misunderstanding that led you to believe that I in any way supported lizkat’s use of “chemical lobotomy” because I called out Dr Tuteur on erecting a strawman (a very emotionally potent one in response to lizkat’s very emotionally potent comment). I’m most certainly a lay person and make no claims to be a psychologist, psychiatrist or neurobiologist, this is just a topic I’m very interested in and grew up around (my mom’s an MD/psychologist, I grew up around neurobiological research and worked in a pain clinic AND I work in the arts so cognitive science and the interaction between and the relationship between the subjective/objective is a passion of mine that intersects with my professional life).
I agree entirely that people with mental health issues are often targeted by sCAMmers, just as people with chronic and incurable diseases are. It’s also very unfortunate that sCAMmers have managed to make it so that discussions of exercise (which has a proven efficacy in helping to alleviate mild to moderate depression), diet and thinking/cognition become the realm of woo when they’re not at all and there’s some very interesting science going on in all these areas. To be clear, I’m in no way saying that people cause their disease or that diet and/or exercise are a panacea, or that cognitive therapies can cure everything – or even that medication may not be necessary in conjunction with CBT, talk therapy and behavioral changes that include diet and exercise. Or that it’s invalid to choose medication as sole treatment. I’m simply saying that we have a lot still to learn about mental illness and mood disorders and this isn’t considered controversial amongst mental health professionals.
You may want to check out SBM’s sister blog Neurologica written by Steven Novella, which focuses on neuroscience and skepticism. Not so much on psychiatry, psychology or social work but he does touch on cognitive science controversies sometimes.
http://www.theness.com/neurologicablog/
That said, I’d also welcome a psychiatrist or psychologist blogger here who could discuss controversies from a SBM perspective that included not just neurobiology but also the various forms of talk therapy, which also constitute an important part of mental health treatments. Or a social worker who could discuss these issues from a social work perspective.
Lizcat said:
“Yes maybe people are expecting miracles like antibiotics and the polio vaccine to come along and save us from the current dreaded diseases. Maybe they expect too much. But really, the lack of progress has been quite surprising.”
Amy replied:
“What I find amazing is the lack of knowledge about the progress made in medicine and the jaded attitude that greets each astounding development with a yawn.
In my professional lifetime alone the following occurred, were developed or were brought into widespread use:
[...]
Psychiatry
Prozac and other SSRIs that have revolutionized the treatment of depression and anxiety”
Plonit replied:
“If the rapid transformation of HIV/AIDS from an invariably fatal condition to what is effectively a chronic disease is not a modern medical miracle then a don’t know what is.”
Lizcat, Amy never said that SSRIs “cured” depression. She said they revolutionized its treatment. And if you think there were millions of perfectly healthy people with HIV/AIDS undetected in the population before Big Pharma discovered them in 1983, you are being wilfullly blind. You are not being a skeptic, you are being a denialist. There is a difference.
Amy, I happen to think Zoe237 has some points in that you may not be in 100% alignment with some ACOG recommendations as published. If that’s true, that would be interesting to talk about. (It’s possible that ACOG recommendations are not entirely science-based, for one thing.) If it’s not true, then there are some rational, not-stupid people trying to follow your thinking here who are failing. It would be more helpful to clarify where we go wrong than to accuse Zoe237 of lying.
Dr Tutuer – Did anyone actually saying that you being retired disqualifies you from writing about medicine? I certainly didn’t, nor do I think that being retired disqualifies one from sharing their experience, knowledge and perspective. What I said is that when one wants to be considered an authority and is discussing science then transparency is needed regarding experience, affiliations and so on. It’s the basics of being able to discern bias, it’s a little thing called “context” and it’s highly relevant to SBM and science in general. What’s weird is that you don’t think it applies to yourself in regards to SBM. Whether one is currently practicing can be relevant if the blogger brings it up themselves (you opened this can of worms yourself in the birthing thread). So, simply being clear about one’s credentials and whether on is currently practicing is about transparency and providing context. None of this would be an issue if you yourself hadn’t actually made it one by personalizing and also cherry picking evidence to suit your purposes.
You keep accusing others of distorting what you say – even when you’re quoted back to yourself you seem to have problems owning your own words! – and yet you consistently distort what others say so as to paint anyone who doesn’t uncritically support your positions as out to get you for no reason and an enemy of SBM. If you’d actually stuck to the science in the first place instead of taking personalized and ideological positions – and being unnecessarily emotionally provocative and sensationalist – and vilifying anyone who calls you on this as personalizing and being ideological, this discussion would be very different. Once again, you really do seem more concerned about yourself and using SBM for personal ends than actually supportive of SBM. This is why it seems like you’re doing cargo cult SBM blogging rather than SBM blogging intended to clarify scientific understanding and defuse pseudosience.
“I happen to think Zoe237 has some points in that you may not be in 100% alignment with some ACOG recommendations as published.”
Where’s your evidence?
Moreover, being in 100% alignment with ACOG is hardly a measure of the accuracy of my writing. In other venues, I have criticized certain ACOG recommendations in the past, and that does not mean that my criticisms are inaccurate.
The real problem here is that several people, you among them, have been casting about for reasons not to accept what I have written. In most cases, the “concerns” expressed are thinly veiled personal attacks.
Let’s review.
Retirement: To my knowledge that is not a criticism that has been raised about other SBM bloggers who are retired.
“Disclosure” of retirement: 1. I have hardly hidden the fact that I am retired. 2. Since when is disclosure of retirement a factor in assessing the accuracy of science writing?
My credentials: I’ll put my credentials up against anyone’s credentials.
Style: My style is my choice, subject to the wishes of Drs. Novella and Gorski. I welcome any advice they have to offer, based on the fact that this is their blog, but more importantly, based on the respect that I have for them and their writing.
If a few commenters don’t like my style, they don’t have to read what I write. As far as “advice” about my style is concerned, I will refer to the immortal words of MAD Magazine: “If people wanted unsolicited advice, they’d ask for it.”
I consider the motivations of the criticisms to be transparent and the tactics distasteful.
Harriet,
I wouldn’t recognise Amy Tuteur if I met her on the street and I had never heard of her before she started posting here. I have nothing against her personally, I agree with her on many things, and I am interested in her point of view on obstetrics. (Which seems to be summed up as live baby good, dead baby bad.)
I am frustrated with the way she presents her posts, however. Sometimes her logic is hard to follow and she offers little or no help to others trying to figure out how she got from A to B and why we should go there too. She treats her logic as self-evident science, but if her logic is hard to follow and this is a popular blog, it’s a bit odd that she often seems so reluctant to walk us through it.
She is also a problematic representative of science, as I have never seen her acknowledge an error, even a minor, non-substantive one. (By comparison, David Gorski acknowledges errors a lot.) Instead, when people bring up apparent errors or contradictions, she first denies their existence; when presented with quotes, she accuses people of nitpicking or lying.
If people are attacking her personally, it probably reflects a general frustration as they try to figure out why they respond so strongly to her posts.
Amy, I think Zoe237 made the case that you are not always 100% in alignment with ACOG – particularly with respect to NPO during labour, where you appear not to be aware that the recommendation has changed.
“Moreover, being in 100% alignment with ACOG is hardly a measure of the accuracy of my writing. In other venues, I have criticized certain ACOG recommendations in the past, and that does not mean that my criticisms are inaccurate.”
I agree completely.
“The real problem here is that several people, you among them, have been casting about for reasons not to accept what I have written.”
“I consider the motivations of the criticisms to be transparent and the tactics distasteful.”
Why on earth would I be casting about for reasons not to accept what you have written? I often do accept what you have written, and say so. I also think you often make statements that are broader than you can support. Sometimes I can’t follow your logic and ask for clarification.
I actually really like the live baby vs dead baby analysis you apply to obstetrics and midwifery. It brings clarity to a very complicated and emotional life event.
Style: My style is my choice, subject to the wishes of Drs. Novella and Gorski. I welcome any advice they have to offer, based on the fact that this is their blog, but more importantly, based on the respect that I have for them and their writing.
If a few commenters don’t like my style, they don’t have to read what I write. As far as “advice” about my style is concerned, I will refer to the immortal words of MAD Magazine: “If people wanted unsolicited advice, they’d ask for it.”
I care about your style because you do not communicate well. If I want a carefully reasoned, nuanced site to which to refer fellow laypeople, I now have to say “Read this article in SBM about science and breast cancer. But if you browse through and read other articles, be careful, Amy Tuteur is deliberately controversial and won’t give you a positive picture of modern obstetric care.”
This is a problem for me. Hence my unsolicited advice.
Zoe is unfairly contrasting her own slight distortions of ACOG statements with her own misinterpretation of Dr. Tuteur’s statements.
For example, Zoe said the ACOG states that “the medical advantages of breastfeeding are significant.” No, that is not exactly what it states.
The citation on breastfeeding from the ACOG reads “Evidence continues to mount regarding the value of breastfeeding for both women and their infants. The American College of Obstetricians and Gynecologists strongly supports breastfeeding and calls on its Fellows, other health care professionals caring for women and their infants, hospitals, and employers to support women in choosing to breastfeed their infants. Obstetrician-gynecologists and other health care professionals caring for pregnant women should provide accurate information about breastfeeding to expectant mothers and be prepared to support them should any problems arise while breastfeeding.”
Dr. Tuteur clearly agrees that there is value to breast-feeding and she strongly supports it. She is not questioning the value of breastfeeding but the strength of the scientific evidence for specific medical benefits such as preventing diabetes. I thought her post was clear and reasonable.
Amy’s post concluded “Breastfeeding is desirable and beneficial, and we should promote breastfeeding as much as possible. However, breastfeeding advocates should not overstate the benefits of breastfeeding or overstate the risks of formula feeding. Rather, we should do whatever we can to allow women who wish to breastfeed to start and maintain breastfeeding for as long as they would like.”
It is clear to me that Dr. Tuteur agrees with the ACOG and that her critics are reading both her posts and the ACOG statements through distorted lenses. It is unfortunate that commenters have chosen to attack her personally for what they wanted to think she wrote rather than to respond rationally to what she actually wrote.
Alison;
“I care about your style because you do not communicate well.”
From all I’ve seen on SBM for the months I’ve been reading it, active critics of Dr. Tuteur’s style are distinctly in the minority. That statement therefore requires a large qualifier:
I care about your style because [I THINK] you do not communicate well.
As a professional communicator who regularly has to provide highly technical information to a lay audience, I would place Dr. Tuteur well ahead of the middle of the pack in writing skill. The fact that she has recently chosen to blog on highly emotion-laden topics (e.g., home birth, breastfeeding, circumcision) contributes far more than “style” to the criticism I’ve seen.
I agree, Harriet. I am frustrated by the fact that the comments section of every one of Dr. Tuteur’s posts here degenerate into these sorts of nitpicking, character-based attacks. I don’t agree with everything Dr. Tuteur writes, but I don’t have any problem understanding the interpretation of the evidence that informs her opinions, even if I don’t come to the same conclusions.
It’s truly unfortunate that the discussions generated by her posts cannot stay within the realm of debating the merits of the data. Dr. Tuteur’s style and choice of topics may be provocative, but that in no way justifies the derisive content of many of these comments. I don’t usually tend to be a ‘tone’ monitor, but enough is enough! Please, let’s get back to the science.
“And don’t take it so personally”
“Don’t take deliberate character assassination personally?”
What, that you’re not 100% in line with ACOG guidelines? C’mon. I’m not either. The problem is that you always act like there is no real debate about your positions (except the breech thread, perhaps). That’s just not true, and it’s not just the evil midwives trying to decrease the ceserean rate or “oversell” the benefits of bf. ACOG does it too. It’s my job as a layperson to try to decipher where medical consensus lies, and some of your statements are not sbm, wrt scientific evidence and trade organization opinions.
Dr. Hall-
“For example, Zoe said the ACOG states that “the medical advantages of breastfeeding are significant.” No, that is not exactly what it states. ”
Yes, i was paraphrasing because I had already quoted the exact words you quote below. Does ACOG believe the HEALTH benefits of bf are INsignificant? Really? Both the AAFP and the AAP ALSO use the words significant health benefits multiple times. Read the rest of the committee opinion (I can’t link to it). Dr. Tuteur says that she believes the medical benefits are small. ACOG strongly supports breastfeeding and recognizes the many health benefits (that Dr. Tuteur seems not to). No, these aren’t direct comparisons, but I would love to see some proof that ACOG believes the medical benefits of bf are small, since I have posted support for my position.
“Research that shows the many health benefits of breastfeeding to infants, women, families, and society continues to accumulate. ”
http://www.acog.org/from_home/publications/press_releases/nr02-01-07-1.cfm
Dr. Tuteur: “As a mother, I am a passionate advocate of breastfeeding and I breastfed my four children. As a clinician, though, I need to be mindful not to counsel patients based on my personal preferences, but rather based on the scientific evidence. While breastfeeding has indisputable advantages, the medical advantages are quite small. ”.
ACOG Committee Opinion No. 361 (2007): Breastfeeding: maternal and infant aspects.
“Evidence continues to mount regarding the value of breastfeeding for both women and their infants. The American College of Obstetricians and Gynecologists strongly supports breastfeeding and calls on its Fellows, other health care professionals caring for women and their infants, hospitals, and employers to support women in choosing to breastfeed their infants. Obstetrician-gynecologists and other health care professionals caring for pregnant women should provide accurate information about breastfeeding to expectant mothers and be prepared to support them should any problems arise while breastfeeding.”
“You know virtually nothing about ARVs or SSRIs but you reflexively oppose them because they are the standard of care.”
And what do you know about it? Are you an expert in AIDS or psychiatry? How can you judge me as knowing nothing? You have no idea how much I know, and you are not qualified to judge anyway, since you are not an expert in those fields. Even if you were an expert, that wouldn’t mean you were right. But you are no more an expert than I am.
“Actually, lizkat, I’m finding it hard to figure out what your agenda is.”
Plonit,
Of course I have read Aids Truth. It is propaganda. And any RCTs I have found measured HIV and CD4 levels, not patients’ health status. My agenda is that I am not convinced the ARV drugs are a good idea. I have read truly horrible things about them. And I cannot find any clear evidence that they actually do prolong life or restore health. And I provided some links showing otherwise.
As I understand it — and it is by no means easy to find unbiased information — at some point it was decided that HIV is the only cause of the syndrome known as AIDS. It was also decided that HIV infection almost invariably proceeds to AIDS. The consensus was that killing HIV would allow the immune system to recover.
AZT was the first chemical tried and after a brief and possibly flawed study it was rushed through FDA approval. AZT is of course extremely toxic and carcinogenic. It also allowed HIV to evolve and become resistant.
So newer drugs were developed, and certain combinations of drugs were known as “highly active anti-retroviral therapy” or HAART. This was to prevent resistance.
Newer drug combinations were compared to older drugs such as AZT. There was no longer a placebo condition, as all patients must be treated for ethical reasons.
So except for the initial AZT study there have been no, or very few, placebo controlled studies.
There has not been, as far as I can tell, the kind of substantial high quality research that would normally be required by science-based medicine.
I do not doubt that HIV exists or that it has something to do with AIDS. I don’t think anyone has shown conclusively that HIV is the ONLY cause of AIDS. AIDS might be much more complicated than is currently believed.
My agenda is that the HIV drugs are known to be highly toxic and damaging to patients’ health. And we simply do not know — and please provide links if you have evidence to the contrary — if the drugs are more likely to help or to hurt.
“if you think there were millions of perfectly healthy people with HIV/AIDS undetected in the population before Big Pharma discovered them in 1983, you are being wilfullly blind. You are not being a skeptic, you are being a denialist. ”
How come whenever someone makes an accusation like this, they fail to provide any links to evidence? It seems to be all hearsay. People were dying from AIDS by the thousands, then HIV was discovered and AZT was used as a treatment. Then AIDS became a chronic disease, as patients were no longer dying from it.
Ok — where is the evidence for that? Yes you can show that AZT, and HAART, cause a decrease in HIV and an increase in CD4. And how does that translate into better health? What about my links to contrary evidence?
Just repeating a myth doesn’t make it true, however much you want to believe it.
Alison, to be fair, Dr. Tuteur has corrected factual errors in the past- specifically the log-log scale she used in the “What should the right c-section rate be?” blog.
To the people who don’t like the comments from Dr. Tuteur’s chellengers, don’t read them. I like a good debate, that’s all.
I believe Dr. Tuteur is exhibit A in “why not to trust a doctor blindly” (the opposite of her claim in the original blog- reflexive doubt). If a pedi or ob told me the medical advantages of bf were small, I’d find another. I’d wonder what else they hadn’t kept up to date with. Because it is contrary to not only EVERY medical organization in the world, but 20 years of research. If she only meant *only* the “LONG TERM” benefits were small, or had made that caveat anywhere in her comments, I might agree with her. That is different than saying that bf is a personal choice (which it definitely is).
In fact, the only things she had to say about the MEDICAL benefits of breastfeeding the short term was this (note the use of the word purported):
“But the risk of infant death in an auto accident is HIGHER than the purported additional risk of those infections, some of which are minor in any case.”
And, when specifically questioned by Dr. Hall about the short term effects of bf like maternal antibodies, Dr. Tuteur’s response was that these results were possibly due to confounding factors (such as greater education of bf mothers).
Not one single other word detailing the health benefits of bf, unless I missed it in my very fast reskimming.
Lizkat,
Anyone who reads the comments on this (or any other) blog is free to judge what you know by what you right. If you wish us to revise that judgment, you need to justify it by providing better reasoned and supported statements.
When you slip to responses like
“you are not qualified to judge anyway, since you are not an expert in those fields. Even if you were an expert, that wouldn’t mean you were right.”
you are only indulging in the tu quoque fallacy as a diversion.
You might consider the following:
http://www.fallacyfiles.org/tuquoque.html
“Tu Quoque is a very common fallacy in which one attempts to defend oneself or another from criticism by turning the critique back against the accuser. This is a classic Red Herring since whether the accuser is guilty of the same, or a similar, wrong is irrelevant to the truth of the original charge.”
Unfortunately, too many of the comments in this blog have slipped to this level.
Scottynuke – “As a professional communicator who regularly has to provide highly technical information to a lay audience, I would place Dr. Tuteur well ahead of the middle of the pack in writing skill.”
As a professional communicator, with experience explaining what can be complex medical concepts to lay people in two languages and from a diversity of backgrounds (amongst other professional experience), I’d disagree. Part of this experience included directly discussing the difference between a CAM treatment and SBM. My main issue with Dr Tuteur is that I find the way she communicates to be anything but a rational defense of SBM or even informative SBM blogging at this point. Her desire to be sensationalist and then getting outraged that people find her posts sensationalist, her cherry picking of data to suit an agenda and then claiming that she’s respecting SBM when she clearly isn’t, her desire to cast any critique of her style or even her facts as being a personal attack, her vilifying of anyone who makes a critique as an enemy of SBM and herself (which she seems to confuse as being the same)…all add up to her actually using a writing style and tactics commonly used by those who use these same tactics to promote pseudoscience of the woo variety. In fact, she seems more interested in using SBM in a seemingly very personalized ideological battle than as a means to discern reality and promote reality based thinking.
I really do get how harsh the environment can be for doctors at the moment and how personal this can feel. I’m more prone to having a bias towards doctors for personal reasons (but am not uncritical of the profession either since quacks come in many flavors). However, if we are to defend SBM medicine, we all – whether we’re professionals or merely laypeople who care deeply about science and reality-based thinking – need to be aware of our own biases, be they personal or ideological, and honest and willing to reflect upon whether we may have an unrecognized bias that influences our reading of the evidence. Why? Because otherwise we’re actually simply doing things that sCAMmers do themselves and accuse us of – like uncritically defending drug companies (which bloggers here generally don’t do, they’re just as critical of commercial pseudoscience usually), or simply being reactionary and reflexively oppositional regarding CAM (tempting but it’s more useful to explain the science in a way people can understand and to have evidence when something doesn’t work) and using science in an ideological fashion.
I care about science and SBM for a variety of reasons, but I bother to discuss it wide and far because I believe that it’s crucial for us to be using reality based thinking to make decisions both small and large and there IS a concerted political and commercial attack on SBM and science in general that threatens to bring on the endarkenment. This is why I consider it worth speaking up when sCAMmers are perpetuating – either innocently or for profit – pseudoscience AND when drug companies and doctors do so.
Correction, that should have been “write”, not “right”.
Zoe237 said “Does ACOG believe the HEALTH benefits of bf are INsignificant?”
No one suggested that. In fact, Dr. Tuteur didn’t suggest that in her post. She said there were health benefits; she did not specifically say they were either significant or insignificant; but I think we can assume that science-based bloggers would not say something has benefits if they thought those benefits were insignificant. She said “the medical advantages are quite small. Many current efforts to promote breastfeeding, while well meaning, overstate the benefits of breastfeeding and distorts the risks of not breastfeeding, particularly in regard to longterm benefits.” Benefits can be significant but small; I think you are confusing scientific significance with value judgments.
There you go again, reading your own interpretations into what was really said. You have just confirmed my point.
“Benefits can be significant but small; I think you are confusing scientific significance with value judgments.”
I can see how you would argue that- I absolutely do not mean statistically significant. I specifically mean significant in the casual use of the word- fairly large, important, carrying meaning etc. Nowhere can I find where ACOG feels the health benefits of bf are small, or that Dr. T feels the health benefits are important.
Harriet Hall concludes: “It is unfortunate that commenters have chosen to attack her [Dr. Tuteur] personally for what they wanted to think she wrote rather than to respond rationally to what she actually wrote.”
Exactly so. These personal attacks are ridiculous. Unfortunately Dr. Tuteur sometimes lets slide easy pickings:
They recognize that many people hold the common sense belief that modern obstetrical practice has made birth safer, and have worked ceaseless at undermining this common sense view. Craig Thompson, a professor of marketing, has examines this tactic in his paper….
Here the meaning is possibly clear only because the reader is burdened with fixing basic grammatical errors.
Writing is work, often hard work, but if a writer wants to “promote a better understanding of medicine” then surely such a noble goal is worth the work to get the essentials written right?
“The difference between the almost right word & the right word is really a large matter–it’s the difference between the lightning bug and the lightning. – Mark Twain, letter to George Bainton, 10/15/1888.
lizkat, there is plenty of evidence that treatment with HAART does more good than harm. It cuts the death rate from AIDS, delays the progression to AIDS by as much as 20 years, and reduces the incidence of HIV infection in a country. Here are just two of many pertinent studies:
http://www.ncbi.nlm.nih.gov/pubmed/19440326?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=3
http://www.msnbc.msn.com/id/27389334/#storyContinued
We also have clear epidemiologic evidence. In 1990 the AIDS rate was the same in Brazil and South Africa: Brazil offered treatment to all HIV positive patients while South Africa denied treatment. South Africa’s rate is now much worse than Brazil’s.
Zoe237 said, “Nowhere can I find where ACOG feels the health benefits of bf are small, or that Dr. T feels the health benefits are important.”
So if you can’t find any such statements, how do you presume to know that the ACOG doesn’t accept that the benefits are small and that Dr. Tuteur doesn’t feel the health benefits are important?
You have once more illustrated my point by reading things that aren’t there.
Dr. Tuteur gave several examples from the literature. You have not attempted to discredit her examples or to provide counter examples from the literature. You have not attempted to show us evidence that the health benefits of breastfeeding are large. Instead, you are making personal attacks and quibbling about language that reflects value judgments.
It is propaganda.
++++++++++
O….kay. And what about the papers they link to? Also propaganda?
And any RCTs I have found measured HIV and CD4 levels, not patients’ health status.
++++++++++
Then you haven’t read very any of the early RCTs on treatments for HIV, because these are studies that use clinical endpoints (e.g. death). The reason why there are fewer studies of that sort NOW is because it would be unethical for the control to be “no treatment” in the light of earlier studies. I have already explained this upthread.
Then you haven’t looked very hard.
“It cuts the death rate from AIDS, delays the progression to AIDS by as much as 20 years,”
But they haven’t been using HAART for 20 years! And the studies are not RCTs. You would never accept a CAM treatment based on that kind of evidence.
“Then you haven’t read very any of the early RCTs on treatments for HIV, because these are studies that use clinical endpoints (e.g. death). ”
Yes I have. They used AZT which is now considered ineffective.
[The reason why there are fewer studies of that sort NOW is because it would be unethical for the control to be “no treatment” in the light of earlier studies. I have already explained this upthread."]
Yes and I said the same thing repeatedly. It would be unethical, so we don’t have RCTs. All we have is blind faith in big drug.
And what about the studies I linked showing no health benefits from HAART, even if HIV level was lowered and CD4 count was raised?
And I have read many articles and abstracts. When patients get seriously ill from the drugs there are convoluted explanations.
I will read Aids Truth again. I never saw anything there that was straightforward and unbiased.
squirrelelite,
I didn’t indulge in any fallacy. Dr. Tuteur accused me of not knowing anything about the subject. But why is she an authority on who knows how much about AIDS?
You are the one who indulged in a fallacy — the fallacy of misinterpreting fallacies.
No, we don’t need ‘blind faith’, we can use observational studies. Or we can use RCTs with surrogate measures where those surrogate measures are reasonable. I linked to an article upthread that discussed exactly this sort of problem and what it means for AIDS research.
Not to mention the fact that there are actually some RCTs of HAART, which I also mentioned upthread.
“From all I’ve seen on SBM for the months I’ve been reading it, active critics of Dr. Tuteur’s style are distinctly in the minority. That statement therefore requires a large qualifier:
I care about your style because [I THINK] you do not communicate well.”
Scottynuke, you are correct. I should amend my statement.
I have further qualifiers: I think Dr Tuteur does not always communicate well. Some of her first posts to SBM were sharp in tone but she was on top of her game, knew her facts and responded quickly to critics. Comments remained on-topic.
I read all the SBM bloggers. I never complain about anyone else’s writing style or have occasion to respond to an “I never said that!” with a “Yes, in fact you did say that. Right here.” And it’s not because I agree with them and not with Dr Tuteur. I have commented more in support of her than otherwise.
“We also have clear epidemiologic evidence. In 1990 the AIDS rate was the same in Brazil and South Africa: Brazil offered treatment to all HIV positive patients while South Africa denied treatment. South Africa’s rate is now much worse than Brazil’s.”
You would never accept that kind of evidence for a CAM treatment! There could be many differences between South Africa and Brazil, other than the drugs.
Lizkat, then I guess you don’t believe smoking causes lung disease either. The only reason we think it does is blind faith in, um, Big Medicine! Because our doctors get paid to counsel us on smoking cessation. Yup, that must be it.
And what about the studies I linked showing no health benefits from HAART, even if HIV level was lowered and CD4 count was raised?
+++++++++
Well, that’s not actually what they showed. The first study you cited I couldn’t get into the link, but from your own quotes it seems to claim weight gain and reduced depression…but quality of life measures did not improve…..but there was no control group, so….hard to draw conclusions since we don’t know what would have happened to these individuals without HAART.
Your quote of the second cited study is very sneaky.
You quote “Overall, the number of HIV or HAART-related symptoms reported did not change significantly over follow-up.” but you don’t give the following sentence “However, symptom experiences differed between those reporting high (≥95%) adherence and those reporting low adherence. Individuals reporting high adherence experienced a decrease in symptoms they attributed to HIV (p<0.05), and a decrease in the symptoms they attributed to HAART-side effects (p<0.05) over time. This decrease in symptoms over time was not seen among individuals reporting low adherence."
The objective of the study was to measure how people felt about their treatment, the persistence of symptoms and the impact of this on adherance to the treatment. It was not designed to test the efficacy of HAART per se. So, you have misrepresented this study as being about HAART efficacy.
“It was not designed to test the efficacy of HAART per se.”
No, but it happened to show that it didn’t work!!
—————-
From AIDS Truth: http://www.aidstruth.org/science/arvs
The original AZT study that led to its FDA approval, and made it the standard for comparison for subsequent studies. We see that more patients died in the placebo group during the first six months. But at 21 months, the AZT group had a 57.6 percent survival rate, while the placebo group’s survival rate was 51.5 percent. No p value is given, so I guess we should assume it was not significant.
Wonderful! The great success of AZT is based on a study that showed no real difference at 21 months. AIDS Truth doesn’t tell us if the follow up went any farther than 21 months.
And we now know that if AZT works at all, it is short-term, because of drug resistance.
And by the way, we might expect a decrease in opportunistic infections when the body is doused in highly toxic substances. That does not mean that patients can stay on the drugs long-term without horrible adverse effects. This fact is increasingly being recognized.
Interestingly, the horrible effects are sometimes interpreted as signs of the drugs’ effectiveness.
it happened to show that it didn’t work!!
+++++++++++
It happened to show that there was a decrease in symptoms in the adherant group, but not in the non-adherant group.
But at 21 months, the AZT group had a 57.6 percent survival rate, while the placebo group’s survival rate was 51.5 percent.
+++++++++++++
At 21 months the AZT group had a 57.6% survival rate. The placebo group survival rate was 51.5% at *nine months*
lizkat,
Just admit what we all can see. You know squat about AIDS or medicine. Don’t try to set yourself up as an authority. You can’t even interpret the literature on it. Nothing wrong with that. It’s not your field. But you are illustrating the blogger’s point.
lizkat said, “You would never accept that kind of evidence for a CAM treatment! There could be many differences between South Africa and Brazil, other than the drugs.”
I would never accept that kind of evidence as stand-alone evidence. I accept it for HIV because it is compatible with lots of other evidence from different sources. I accepted that kind of evidence for smoking and lung cancer because all of Hill’s other criteria of causation were fulfilled.
We can’t ethically do a placebo-controlled RCT of AIDS drugs today any more than we could do a placebo-controlled parachute test. RCTs are the gold standard, but when they are not possible we can get comparable certainty from other avenues of investigation, especially when they all corroborate each other and form a coherent body of evidence.
weing,
Medical experts are not immune to mass delusions. A concerned skeptic like myself may be more motivated to see what is really going on. I have nothing at stake. I just don’t trust the drug companies and have seen many examples of their sleaziness. I am NOT against drugs in general — sometimes we need pain killers or antibiotics. But the drug mania is out of control. We expect pills for everything.
But there is no cure for AIDS. I re-read AIDS Truth. When the evidence is vague and ambiguous you can read it like tea leaves, seeing whatever you expect to see.
And calling me ignorant might make you feel smart and superior, but it doesn’t win the argument. You didn’t provide any logic or evidence. Just the accusation of ignorance. That’s an extremely brainless way to debate.
lizkat said, “the horrible effects are sometimes interpreted as signs of the drugs’ effectiveness.”
Are you perhaps referring to the immune reconstitution syndrome, where the body starts to fight off infections that it was previously unable to react to?
Your criticism of AZT is way out of date. Have you even looked at the difference between the original AZT treatments and today’s treatments of choice? It’s a different world!
lizkat,
It’s not a debate when you don’t know the basics of what you are talking about. I told you before, when AIDS was first described, the patients very quickly died. I have patients now that are live and well over 10 years after their first PCP pneumonia. There is no debate about that.
BTW you are the one erecting the straw man of a cure for AIDS. There is no such thing, yet. There is only treatment.
“We can’t ethically do a placebo-controlled RCT of AIDS drugs today any more than we could do a placebo-controlled parachute test.”
And as far as I can tell very little controlled research was ever done. Now we see claims that AIDS drugs prolong life by decades — even though the drugs haven’t been around for decades. There is a lot more raving going on than sober analysis. And it’s very hard to know the extent of the drug companies’ influence on funding, and on the reporting of evidence.
All anyone here has been able to do is call me ignorant. No one shows convincing evidence. This blog is great at debunking the supposed evidence for CAM claims, but you aren’t nearly as skeptical about the drug companies. Once in a while you express some doubts, but mostly you trust anything as long as it isn’t CAM.
“when AIDS was first described, the patients very quickly died.”
So how come the HIV latency period was supposedly 10 years or more?
” Have you even looked at the difference between the original AZT treatments and today’s treatments of choice? It’s a different world!”
Of course I have! HAART is not as toxic as AZT alone, and is less likely to lead to drug resistance. That only tells us that HAART works better than AZT, which may not be saying much at all.
See what I mean? I am talking about patients that meet the old definition of AIDS. HIV infection is not AIDS.
If you want to start someplace. Find out what the diagnostic criteria are for AIDS.
What I have seen in trying to understand HIV/AIDS is contradictions and confusions galore. It isn’t really surprising that there are HIV deniers. Even though they are irrational, their irrationality is in response to the irrationality, and possible deceptiveness, of the AIDS industry.
Harriet, I wish you would take some of your skepticism, your intelligence, and your medical knowledge and focus it on this mystery.
Lizkat,
Technically, you were correct that HAART hasn’t been used for 20 years. In the sources I referenced on 30 Jan at 11:53 pm, they stated that it was introduced in 1996, which means we are going on 15 years now.
Did you look at those cross-references?
Do you disagree with the AIDS incidence and death numbers graphed?
Where are your supporting statistics?
Evidently you don’t even believe your own sources. From the AIDSTRUTH link you posted, I found the following:
“Benefits of antiretroviral drugs: Evidence that the benefits of HAART outweigh its risks
Numerous clinical trials as well as observational data (i.e. studies from clinical practice) have demonstrated beyond reasonable doubt that the benefits of antiretroviral treatment for people with HIV/AIDS far outweigh their risks. ”
and the following:
“Jordan et al. (2002) Systematic review and meta-analysis of evidence for increasing numbers of drugs in antiretroviral combination therapy. BMJ 2002;324:757. This meta-analysis of 54 antiretroviral clinical trials has demonstrated that:
* Using one antiretroviral reduced progression to AIDS or death by 30% against placebo.
* Using two antiretrovirals reduced progression to AIDS or death by 40% against one antiretroviral
* Using three antiretrovirals reduced progression to AIDS or death by 40% against two antiretrovirals”
HAART is not a panacaea or a cure. But, it is far better than the alternative.
And, the “follow-up” has been going on for 15 years.
“Find out what the diagnostic criteria are for AIDS.”
Signs of HIV infection, low CD4 count. Some might also require opportunistic infections or certain cancers.
“And calling me ignorant might make you feel smart and superior, but it doesn’t win the argument.”
Agreed. Nevertheless, you are not expressing your opinions in the tentative way that a true skeptic/scientist might when looking at evidence that you describe as “vague and ambiguous”.
The absence of prospective randomised trials is just as undermining of your opinions as it is of the now vast experience of clinicians comparing present outcomes with those of historical controls. That deserves at least as much consideration as your knee-jerk (if deserving) distrust of drug companies.
The first anti-HIV/AIDS drugs were available in 1987, that’s more than twenty years ago. Combination therapies were not that far behind.
If you multiply those three improvements, using a three drug combination of antiretrovirals is 155% better than a placebo!
* Using one antiretroviral reduced progression to AIDS or death by 30% against placebo.
* Using two antiretrovirals reduced progression to AIDS or death by 40% against one antiretroviral
* Using three antiretrovirals reduced progression to AIDS or death by 40% against two antiretrovirals”
The drug vs placebo trials used AZT, which is now known to be ineffective. Subsequent trials compared newer drugs to AZT, not to placebo.
We’ve been through all this already.
“vast experience of clinicians comparing present outcomes with those of historical controls. That deserves at least as much consideration as your knee-jerk (if deserving) distrust of drug companies.”
Yes, I definitely would like to read about that clinical experience, and I do consider it useful, if not definitive, evidence. I have not been able to find any though.
I don’t think my distrust of drug companies is knee-jerk. I think they have become monstrous, and I am not the only one saying this.
In reading about the ARV drugs I have been truly horrified. Yes it’s horrible to die from AIDS, but I have not been convinced the drugs are life-saving.
And some of the patients are experiencing such horrendous and tragic adverse effects. How would you like to be in your 40s with the health status of someone in their 80s?
I really do not think the effects of these drugs are well enough understood, especially long-term.
“If you multiply those three improvements, using a three drug combination of antiretrovirals is 155% better than a placebo!”
WHAAAT? The newer drugs were never compared to placebo! They were compared to AZT, which is highly toxic.
I have not been able to find any though.
++++++++++
Then you have not been looking!
“Signs of HIV infection, low CD4 count. Some might also require opportunistic infections or certain cancers.”
That’s right. My patients have all had PCP which meets the old criteria. So when I say AIDS I mean the above. HIV infection is not AIDS. Don’t confuse the two.
Plonit,
First of all, the time between HIV infection and death from AIDS, before drugs, was highly variable, and could be 10 years or more. So it’s very hard to tell how much, if at all, the drugs extend life. If a patient caught HIV at age 30 and died at age 45 without drugs, for example, and another patient caught HIV at 30 and died at 48 with drugs — did the drugs extend life by 18 years, or by 3 years? It is all very very hard to interpret.
“Then you have not been looking!”
I have been looking! And no one here provides helpful clues!
lizkat,
Many of my patients would not be alive today if it wasn’t for the products of those horrid drug companies.
“First of all, the time between HIV infection and death from AIDS, before drugs, was highly variable, and could be 10 years or more.”
There you go again. It’s the time between HIV infection and onset of AIDS that is highly variable.
There are people in the world who were dying of AIDS, literally wasting away and on the brink of death, who have recovered from opportunistic infections, regained their weight, and are now asymptomatic.
That is the clinical experience of using ART and HAART.
Did you look at that link I posted
http://www.impactaids.org.uk/lancet363.htm
Are those before/after photograph faked? Are the countless other accounts of dramatic improvement in health faked? (By the way, you should know that the man in that photograph is still alive). Is it all just some conspiracy of evil doctors? An evil conspiracy of doctors and patients who have fought the drug companies to push down the price of treatment?
What makes you so sure that these drugs are worse than the disease?
I have been looking! And no one here provides helpful clues!
++++++++++++
I give up.
“Check out the work of Partners in Health in Haiti and Rwanda, for examples.”
“can I recommend that you spend time here
http://www.treatmentactiongroup.org/index.aspx”
http://www.impactaids.org.uk/lancet363.htm
“links to hundreds of studies into the natural history of HIV/AIDS, and into the efficacy of treatments, available here
http://www.aidstruth.org”
Are these enough helpful “clues” for you? All already provided upthread.
If a patient caught HIV at age 30 and died at age 45 without drugs, for example, and another patient caught HIV at 30 and died at 48 with drugs — did the drugs extend life by 18 years, or by 3 years? It is all very very hard to interpret.
+++++++++++
No, it’s not ‘very, very hard to interpret’. Firstly, we don’t usually know when someone became infected with HIV – we can usually only guess. So, the relevant timeframe is when some presents to a healthcare setting for some reason.
In the developing world this is usually when they become symptomatic, perhaps when they are dying. So, we are looking at how long people survive from this point – as opposed to dying at this point.
In the case of treatment for people who test HIV+ and have always been asymptomatic, the judgment is more complex – but there have been quite a lot of studies (RCTs too!) that look at this question of when to start treatment, and what the expected benefits are.
Those studies do all take into account what is known about the usual progression of the disease in calculating benefits (i.e. they are aware that someone can be infected with HIV for a long time before becoming symptomatic) – so really it is not so “very, very hard to interpret”
I have been watching Lizcat’s comments for quite awhile. Her main focus seem to be protecting people from lifesaving treatments. Her posts are oddly lacking in any compassion.
I’m considering the possibility that Satan, AKA the serpent or Tom Cruise has hacked into some poor unfortunate soul’s computer. I suggest someone perform an e-exorcism.
Signed
Gabriel – Messenger of God, Keeper of Seraphim, Cherubim, and paradise, etc
Oh, I am so stealing that line!
Zoe237 said, “Nowhere can I find where ACOG feels the health benefits of bf are small, or that Dr. T feels the health benefits are important.”
“So if you can’t find any such statements, how do you presume to know that the ACOG doesn’t accept that the benefits are small and that Dr. Tuteur doesn’t feel the health benefits are important?”
No, I posted my evidence that the two aren’t matching. I’m still waiting for any quotes that prove Dr. Tuteur feels the medical benefits of breastfeeding are significant or that she supports ACOG’s bf statements.
I suppose she could have just forgotten in a post on SBM on breastfeeding to mention ONE single medical benefit of breastfeeding that was proven. Or that the AAFP, AAP, WHO, ACOG are some of those “breastfeeding advocates.” Indeed, when presented with this question, she said “confounding factors!” This accounts for some difference, sure, but not all. At least not according to the AAP or ACOG.
If Dr. Tuteur wanted to avoid controversy and inflammatory remarks, it would have been fairly easy to present the medical benefits of bf, the drawbacks, and the conflicts in current research in a objective manner.
The problem isn’t that she takes positions different from ACOG. The problem is that she pretends there is no disagreement amongst obstetricians about breastfeeding, cesarean section, circumcision, when that’s simply not true.
But yes, I am biased as a breastfeeding, not circing, non c-section mom, so I’ll bow out.
Due to fending off AIDS denialist nonsense, the real point of my comment on AIDS treatments has been drowned out.
Does anyone doubt that “patient defiance” and refusal to accept medical authorities when they have been wrong has been a vital part of the story in the development of new, better and more accessible treatments for HIV/AIDS?
Okay this is only my personal opinion but, having waded through the whole commentary section I feel I have a right to express it.
Regarding Amy,
I have also frequently been confused by some of what Amy has written, but have managed to extract the meaning eventually after she has posted clarifications. And it does seem to me that she is posting, by and large, the views of mainstream OG as explained by Harriet.
I think a lot of this confusion could be avoided if she wrote in more detail about a narrower area. I would much rather read a long detailed account than a short ambiguous article that then runs into 200+ comments in order to fix the misunderstanding. That is only my preference, opinion, and advice though
The attack on Amy is, I think unjustifed in its scope and intensity, but I don’t think it is deliberate but the result of the continuing misunderstanding of what she it is exactly that she has written. For example the long list of comparisons between Amy and official OG policy actually runs almost entirely in Amy’s favour but the poster doesn’t seem to see that that is the case.
Regarding Lizkat,
It is clear that Lizcat knows little about HIV/AIDS, which is not a criticism exactly, because it is a difficult area. However what is a criticism is that Lizcat’s has “decided” to lean towards the contra view for the only obvious reason that she distrusts the big pharmacuetical companies. Hey, who doesn’t distrust them, but that is not a sufficient reason.
Plonit,
I think I remember it a little differently. What I recall is GMHC and ACT UP organizing, informing people and pressuring for funds – in particular, pressuring government to fund research and treatment for a disease that in the US at the time had been called “4-H disease,” for Haitians, Homosexuals, Hemopheliacs and Heroin users – of whom only the hemopheliacs were politically popular in the Reagan years.
The disease was recognized by the CDC and it was diagnosed by doctors. In 1987 I had an HIV-positive friend trying desperately to save his own life as an AIDS researcher at McGill University. (The head of the AIDS research lab preferred not to have HIV+ researchers because he felt they lacked the necessary objectivity.) He died in 1996.
“Patient Defiance” to me means patients refusing to accept the diagnosis, refusing to follow the standard of care, or insisting on an alternate diagnosis or treatment without a scientific foundation. “Reflexive Defiance” would mean that this refusal would be based solely on the fact that diagnosis and recommendations for treatment came from a doctor.
I see the “defiance” of marginalized groups refusing to accept marginalized status and insisting on funding for their health care needs as fundamentally different from “defiance” of patients rejecting scientific evidence.
… I may recall some foot-dragging on the part of the CDC, but I don’t remember the details.
Thoughts?
In Canada, AIDS activists were essential players in getting AIDS research funded by the government, in promoting awareness and education, in getting needed drugs payed for by medicare, and in directly raising funds for research, hospice and other care.
http://cnews.canoe.ca/CNEWS/Canada/2006/08/14/1753690-sun.html
“When Dingwall stood up to speak, thousands of world activists stood up, turned their backs and screamed, “Shame. Shame. Shame,” throughout his speech. He was so upset, he left the conference the next day, she said.
“It was the first time I felt the power to make a difference.”
In 1997, during Chretien’s election campaign, he announced his government was “planning to sunset” its promised annual $42.2 million HIV/AIDS funding after only five years, Binder said.”
And The Stephen Lewis Foundation – a Canadian charity organization – has been at the forefront of AIDS prevention and treatment in Africa (as well as women’s rights).
http://www.stephenlewisfoundation.org/
oops, that excerpt cut off before the good news…
Her tiny cohort of 10 activists wanted the federal Liberals to commit to permanent AIDS funding, so she and another HIV-positive woman bought two tickets to a huge Chretien fundraiser at Toronto’s Sheraton Hotel.
“Luckily, a Liberal lawyer friend of Binder’s invited them to sit at her table — front and centre. Chretien walked on stage to thunderous applause. After it stopped and before he began speaking, the two women stood up, but were “engulfed” by three towering security guards.
Binder managed to yell: “Renew the National AIDS Strategy now,” before being “escorted” out of the room.
“I heard Chretien say, ‘Look what politicians have to put up with,’ a remark that elicited weak laughter from the audience,” Binder recalled.
The next day, opening a building in New Brunswick, Chretien announced he was renewing the National AIDS Strategy.”
If “Patient Defiance” is defined narrowly (“patients rejecting scientific evidence”) as in your comment, it would not then include rejection of many features of current obstetric practice such as routine use of continuous cardiotocography. Patients who ‘defy’ such practices are not rejecting scientific evidence, but rather are defying medical authority where it is not based on scientific evidence. Perhaps we need to be clearer that medicine *ought* to derive its authority from its scientific basis, but clearly there are, in real life, other sources of authority for medical practices than science alone.
As for HIV/AIDS treatments, the collective activism of patients was not only aimed at increased funding for prevention and research, but also had a huge amount to say about the direction and priorities of that research. A sense of the depth of that involvemencan be gleaned from early treatment action group publications
http://treatmentactiongroup.org/assets/0/16/42/196/280/4aa7813e-f7a2-48d4-a54c-fa9c2d4819f0.pdf
lizkat – You never did answer my question regarding whether you actually have friends who are HIV+ or with AIDS or who have died of AIDS related causes, or are HIV+ yourself. Do you? I highly doubt you do because if you’d ever nursed someone through end-stage AIDS you wouldn’t be making some of the outrageous statements you have been making while pretending to be arguing the science (you keep saying you don’t understand).
I recognize that the primary motive of pharmaceutical companies is to make money but that doesn’t mean that all drugs are lethal and part of a conspiracy to kill people.
I’m not going to get more involved in this because I do have an intensely person bias since I’ve been involved with this since the 80s and have nursed friends who have died of AIDS related complications, have friends who are HIV+ who have seen their lives extended beyond what we thought was possible even 10-15 years ago and am involved in activism. You’re actually making me quite angry!
Thanks, Fifi!
Is activism the same as patient defiance? My impression is that relationships between patients and their treating physicians have been collaborative. Doctors wanted safe, effective and accessible treatment for their patients and PWAs wanted these things from their health care systems.
I don’t think that rejecting medical science in favour of, say, coffee enemas and baking soda and insisting that Big Pharma was out to poison people was a significant element driving funds into science-based care for AIDS and HIV. The people I knew who were most affected by HIV were very aware that it was infectious and looked to science for help. If they rejected prophylactic drug therapy it was because they thought the risk/benefit was not there for them.
I would have thought that patient defiance and activism would have overlapped more in the field of obstetrics, where women rejected and publicised practices they felt were dehumanizing with the result that these practices were subjected to scientific rigour. Some of these practices passed, some didn’t.
Thanks Plonit. Agreed.
Re my comment above: “If they rejected prophylactic drug therapy it was because they thought the risk/benefit was not there for them.”
Alternatively, my neighbour committed suicide by discontinuing ARVs in 1998 when his girlfriend left him. He was dead within six months.
I think of patient defiance as being a symptom of that river in Africa, denial. Why bother asking for my help in dealing with your problems, if you don’t want it? Makes no sense to me otherwise.
I have to agree with both Plonit and Alison/FiFi’s points.
I take Alison and FiFi’s point. As I recall, thinks were very bad on the prevention and treatment standpoint before HIV/AIDs patients and their loved one really started standing up and pushing. Sadly, I don’t think public attitudes really turned around until people like Magic Johnson started standing up and pushing too. And public attitude and public policy are what fund research and health programs.
But, I can also see how HIV/AIDs advocates may have pushed for less promising research in the hopes of a vaccine or cure. I do think I recall my friend who is a Microbologist, working on a HIV vaccine years ago saying something in that regard. Sorry, couldn’t follow the link, trouble with my Acrobat. I think that is a good lesson that can be applied across the field of all SBM research.
Conversely, perhaps the HIV/AIDs advocates would not have felt they had to take the steering wheel if they had not seen public policy drop the ball and AIDs research underfunded. We can’t know. But perhaps there is a lesson to be learned there to. (sorry for the mixed metaphor)
So it is all part of the story to consider.
” You never did answer my question regarding whether you actually have friends who are HIV+ or with AIDS or who have died of AIDS related causes, or are HIV+ yourself. Do you?”
What is the difference Fifi? There is no cure. That’s what you do not want to face.
Not only is there no cure, there are no good treatments. Maybe the drugs do promote survival, for a while. But that doesn’t mean they are a good treatment.
And one more thing — if the AIDS industry has settled on a particular theory of AIDS and a particular kind of treatment, that is BAD for patients. Of course I want patients to get better!It’s so ridiculous to accuse me of not caring simply because I see problems with the current approach. If I didn’t care I wouldn’t even bother trying to understand this.
“I think of patient defiance as being a symptom of that river in Africa, denial. Why bother asking for my help in dealing with your problems, if you don’t want it? Makes no sense to me otherwise.”
Oh yes weing, you know what’s best for everyone of course. Anyone who disagrees must be in denial. It could never be you who is in denial, because MDs know everything.
“I have been watching Lizcat’s comments for quite awhile. Her main focus seem to be protecting people from lifesaving treatments. Her posts are oddly lacking in any compassion.”
Oh yes, of course, that’s just what I really want. It bothers me so much that these wonderful drugs are doing such wonders for people. I am trying to find the truth about AIDs drugs just to be mean.
Did you ever consider that maybe resources are being funneled in the wrong direction?
When police are trying to solve a murder, sometimes they start off down the wrong track and arrest an innocent person. And sometimes they refuse to admit they were wrong and start over.
Well I think a similar thing can happen with medical researchers.
weing on 01 Feb 2010 at 10:49 am
“I think of patient defiance as being a symptom of that river in Africa, denial. Why bother asking for my help in dealing with your problems, if you don’t want it? Makes no sense to me otherwise.”
Jeesh, the HIV/AID epidemic is a great case study of what happens when you mix denial and prejudice together to form public policy and opinion, not just in the U.S., but in country after country.
Is there any hope that we learned anything from our mistakes?
“Oh yes weing, you know what’s best for everyone of course. Anyone who disagrees must be in denial. It could never be you who is in denial, because MDs know everything.”
I know medicine and little else besides that. I also know a straw man fallacy when it’s used.
“mix denial and prejudice together to form public policy and opinion”
So denial and prejudice are why HAART is given to AIDS patients? Denial and prejudice are why Gallo et al are helping the drug companies make ever more zillions? It’s a big conspiracy to punish homosexuals?
When police are trying to solve a murder, sometimes they start off down the wrong track and arrest an innocent person. And sometimes they refuse to admit they were wrong and start over.
+++++++++
Meaning what exactly? Just because police CAN go down the wrong track doesn’t tell us whether they have done so in a particular case.
So, let’s get down to brass tacks…do you believe that HIV causes AIDS?
Just to clarify. I was saying I believed that denial and prejudice led to the very slow start in an effective prevention, research and treatment campaign in the US and abroad. I am not saying that SBM failed and I’m not saying they didn’t make mistakes. I don’t know.
I do believe that the American people and the people of nations around the world did not give the research dollar to SBM or public policy direction needed to do a better job.
I was in NO way talking about any antiretroviral drugs applications today. Honestly, I know so little about them I would not presume to comment.
The main basis for my comment is remembering the news coverage at the peak of the U.S. AIDS outbreak and working in a small retail shop in a city with a large gay population. My boss was a active member in HIV/AIDS fundraising for community support. (helping with hospice support, paying for TV access in hospital rooms, doing home visits, that sort of thing). She lost a good friend to AIDS while I was working there and I remember her sadness and frustration.
“do you believe that HIV causes AIDS?”
I have never been involved in AIDS research. Neither has anyone in this discussion, I guess. I am not going to pretend I know what causes AIDS. HIV probably has something to do with it, but whether it is a sufficient cause I do not know. The AIDS industry was wrong bet everything on that assumption.
“Just because police CAN go down the wrong track doesn’t tell us whether they have done so in a particular case.”
I meant that once police, or researchers, or any of us for that matter, have made a serious decision we are reluctant to admit it was wrong. If the AIDS drugs are not the best approach, then Gallo et al would have a serious career problem. So they would shove any doubts out of consciousness.
We’ve heard of murder cases where they made a decision and stuck with it in the face of contrary evidence, until it becomes obvious to everyone that they arrested the wrong person.
I think they did that with the AIDS drugs. I am not a denier. I think the current theory must be at least partly correct. No one would believe it if it were completely wrong. I think the deniers are nuts.
But I do not think the current understanding is complete. When your only tool is a hammer, you see all problems as nails. That’s what they’re doing — they are attacking AIDS like it’s a bacterial infection. Kill the bugs with poison, and the patient will be cured.
It was a disease model that we could all understand, and it worked. I think AIDS is more complicated.
I think that ultimately it will be obvious that the AIDS drugs were a mistake.
Lizcat said “I think that ultimately it will be obvious that the AIDS drugs were a mistake.”
It’s clear that you think that. But, I’d like to see you visit the Castro with a sign saying that.
Actually, they are attacking AIDS like a retroviral infection.
No one who works on HIV/AIDS thinks that it is uncomplicated. There is so much that is not understood. I’m glad they haven’t taken the position that we have to understand EVERYTHING before doing ANYTHING.
lizkat – “What is the difference Fifi? There is no cure. That’s what you do not want to face.”
Duh there’s no cure, that’s why I’ve been putting time and effort into raising money for research for over 20 years. Who here’s claiming that there’s a cure for AIDS? That’s a massive strawman you’re erecting. Just because there’s no cure doesn’t mean we should do nothing to alleviate suffering and extend lives while we’re searching for a cure and vaccine. Clearly that’s what you’re advocating – unless you’re proposing some Big sCAM treatments instead…are you?
The difference is that you wouldn’t be exploiting AIDS and people with AIDS simply to promote your entirely reactionary anti-pharmaceutical agenda here if you had actually seen the ravages of AIDS first hand in the early days and seen the progression in treatments and extension of life. Your assertions about the medications and treatments being worse than having AIDS related illness is so far off the market that it’s laughably obvious you have no clue what you’re talking about. Not only do the medications extend lives, they allow people to live active and pretty normal lives (to work and generally live a full and active life). The drugs aren’t a cure but they’ve turned a death sentence into a chronic disease for many people.
I haven’t been involved in AIDS research but I have a friend who’s an AIDS researcher – he’s not subsidized by Big Pharma in any way shape or form or associated with developing drugs – and he doesn’t think AIDS drugs are a mistake. What you, lizkat, think is largely irrelevant since you’re clearly living in some AIDS denialist fantasy land since all you do is repeat denialist talking points (simply admitting that HIV may play a role makes you no less of a denier).
Alison – “Is activism the same as patient defiance? My impression is that relationships between patients and their treating physicians have been collaborative.”
Not generally, however there can be some crossover. Generally when it applies to one person it’s called advocacy not activism. In the very, very early days when there was a lot of fear even within the medical profession and there were very few treatments, it did happen. That’s a bit of a complicated issue to discuss in a generalized and non-anecdotal way and probably not worth delving too far into since it’s bound to be a controversial thing to discuss. In the case of AIDS, one really also has to look at and understand things in the context of their time.
Alison – “The people I knew who were most affected by HIV were very aware that it was infectious and looked to science for help. If they rejected prophylactic drug therapy it was because they thought the risk/benefit was not there for them.”
Most people do now but there was a brief period of time, when little was actually known, were there were all kinds of theories floating around and it was also a highly political and personal issue. To put things in context. Homosexuality only stopped being listed as a mental illness in the DMV in the 80s, Queer power and Gay rights were only really starting to be established – the 70s and 80s were an incredibly liberating time for Queer people (and women too) in terms of being able to be out and sexually active without fear of total social exclusion. AIDS changed all that, suddenly Gay people (and other sexually liberated outsiders) were plague carriers being punished by God for their wicked ways. The amount of fear and prejudice is probably hard for anyone who wasn’t there to understand (and it was also present within the medical community). Plus whole communities were being decimated, our friends were being told they wouldn’t live a year by doctors (thankfully most of my friends who were diagnosed early on got at least a decade) and people were dying horrible, horrible deaths around us. I lived through a decade of some of the most brilliant, talented and original people I know and very close friends dying one after another. I still mourn the loss. Which is why someone like lizkat exploiting their deaths and AIDS for a stupid, entirely ignorant, ideological agenda makes me angry. The early days were horrible because we knew so little, there was so little that could be done and the early drugs were pretty harsh (but better than the alternative).
“Most people do now but there was a brief period of time, when little was actually known, were there were all kinds of theories floating around and it was also a highly political and personal issue.”
Yup. There was a time in the late 70s when a few scattered men were asking everyone they knew, all the doctors they could find, what could be wrong with their boyfriend because he was just getting sicker and sicker. Nobody knew and there wasn’t anyone to put the pieces together. But in 1981 when the CDC identified a syndrome for the first time, there were people who could say Oh! So it’s a thing! I wonder if that’s what ___ died of! It got immediate media attention.
The infectious agent wasn’t identified until two years later, so in the meantime it was open for all kinds of speculation. And speculate they most certainly did. But most people I knew thought there was an infectious component to it.
Lizcat,
The way scientists make names for themselves is by discovering something new. It can be very fun for a scientist to be able to say Nyah Nyah! when they prove a more senior researcher wrong. So if in the 26 years since HIV was identified as the infectious agent of AIDS nobody has been able to add anything major to the HIV theory of AIDS, we can be pretty confident it’s correct. We can also be pretty confident that any starry-eyed new scientist in AIDS research as well (as well as every hoary old researcher) has noticed every single question about the research you have brought up. They aren’t news. Nobody’s ignoring them. If they were problems, scientists would be arguing with eachother about them. Which they aren’t.
Another reason we can be pretty confident it’s correct is that it’s useful. By using the HIV infection model for AIDS researchers have been able to develop effective therapies. If the model were wrong or significantly flawed, they wouldn’t have been able to do this.
If you don’t understand the research — which is normal: neither do I — how can you possibly come to the conclusion that it’s flawed?
Alison, my point was simply that even in the Queer community there was confusion and a wide variety of theories (most now disproven) so everyone was clutching at straws until the science started to come in about AIDS. Even if most of us figured it had an infectious component, it took the science coming in to confirm that. AIDS denialists tend to clutch onto some of these disproven theories and writings from these confusing times (just like lizkat is trotting out the side effects of old drugs to claim that medication is worse than dying of AIDS related causes).
Just to be clear, my discussion of the sociocultural atmosphere of the early days of AIDS (or GRID or Gay plague or gay cancer as it was sometimes called) and the confusion before we had much scientific knowledge is in NO way an endorsement of contemporary AIDS denialism (of the “HIV doesn’t cause AIDS” variety or lizkat’s pseudoskeptical anti-drug variety). We’ve come a very long way since then even if we still don’t have a cure or a vaccine.
Another thing worth noting is that AIDS research has actually been useful in other areas too, such as hepatitis.
Fifi, Agreed.
wow, 296 comments can be thoroughly entertaining!
lizkat, your most recent posts mark you as someone with only the most basic understanding of a subject. oddly, right alongside, are some pretty tall assertions, claims and suspicions founded almost exclusively on “doubt”…that is…hmm….not terribly compelling.
Allison, your bit on “nyah nyah” is RIGHT ON (hey, just cause they are not jocks doesn’t mean they are not competitive!). in grad school, i was introduced to the concept of the professor that makes their name *not* by necessarily contributing original research, but by tearing others’ papers to shreds via “academic rebuttal” (or something of that nature). not for the faint of heart, but certainly not a task worth undertaking unless you have some cracks to expose…your contrarian career is riding on it! i boast only the most superficial and lay understanding of AIDS/HIV but it appears that there is not a hoard of contrarians risking their careers on the cracks at the moment…
Dr. T and Zoe – dang. I see general agreement with her statements and the ACOG. you want 100%? high stakes!
Everyone so far who objected to my statements about AIDS drugs has accused me of being ignorant and knowing nothing about the subject, or of not having compassion for AIDS patients, and possibly hating homosexuals. No one has provided any good evidence or reasons for their approval of the AIDS drugs. No one has even described an example of a patient who was dying from AIDS, went on the drugs and recovered and lived relatively normally for many years.
I could have missed that, in such a large number of comments. But I don’t think so. The defense of the AIDS drugs has been mostly emotional, mostly attacks on my intelligence or compassion, with little or no logic or evidence.
There are reasons why the deniers find so many holes in the theory and the treatment. A lot of it doesn’t add up.
Some have said well the drugs aren’t perfect but they’re better than nothing. The important question is how much better than nothing are they really?
I brought up the subject in response to Dr. Tuteur’s glowing praise for the treatments. I doubt she ever wondered whether AIDS research is making progress. Her post was about why we should trust the experts, and not strain our little brains trying to figure things out for ourselves.
If we are unlucky enough to catch a serious disease, we should meekly obey our doctors and not waste time trying to making sense of the chaos on the internet.
I very strongly disagree. And because I don’t have blind faith in the medical industry I am accused by commenters here of hating mainstream medicine, of being ignorant, or of being a CAM advocate.
Some people are overly distrustful of mainstream medicine, while others are overly trusting. If you consider the average person ignorant and stupid and unable to understand medical concepts, then of course you will agree with Dr. Tuteur.
“I doubt she ever wondered whether AIDS research is making progress”
I didn’t wonder. I KNOW that there has been tremendous progress in my professional lifetime. How do I know? I read the studies, I follow the epidemiologic data and I have seen the results in patients.
Lizkat, I gave you an example of someone who committed suicide by discontinuing his ARVs. That should be close enough.
“If we are unlucky enough to catch a serious disease, we should meekly obey our doctors and not waste time trying to making sense of the chaos on the internet.”
I would put it rather, “I am unlucky enough to have developed a serious disease. I am lucky enough to have access to doctors, people who have been to medical school, treated thousands of patients, understand how tests work and know how to interpret research; as such they are essential collaborators. I am also lucky enough to be literate and to be able to go some way to educating myself on topics that interest me. If I had delayed seeking help for my serious illness until I had given myself the equivalent of a medical school education and residency by googling the internet* I would be dead today. If I had the capacity to be a doctor myself, I would have gone to medical school. I don’t and I didn’t.”
* This is not possible, by the way. Just so you know.
@Lizkat
It is not in the least elitist to hold that what you call “the average person” would have extreme difficulty in even finding the time to assimilate and understand the enormous amount of data that is available concerning the nature and treatment of HIV/AIDs, or of many other medical conditions. Even just getting a handle on the basic medical vocabulary can take months. Some can do it, most can’t, and those who can’t are clearly not always aware of that fact.
If you want proof of this, Lizkat, I simply refer you to what you yourself have described as “the chaos on the Internet.”
So by all means make up your own mind, and make your own decisions. That is your right when you are acting at your own expense and risk.
But don’t come here, or anywhere else, pretending that you actually know anything of importance to anyone else.
For example, you are clearly don’t know enough about virus infections, and especially retrovirus infections, to understand what a triumph it is that the lives of HIV patients are being prolonged at all by treatment, in what is a mostly patient-acceptible trade off between life extension and side effects.
You don’t understand why doctors might be reasonably proud of that, or do you? (I don’t trust drug companies either, but I do trust my fellow doctors when they are so sure that lives are being extended. That should be your inclination too, if you have any sense.)
“If we are unlucky enough to catch a serious disease, we should meekly obey our doctors and not waste time trying to making sense of the chaos on the internet.”
If you are unlucky enough to catch a serious disease you should do what you want with the attitude that you wish. No one is going to stop you.
There is a point that you can NOT get help from a doctor unless you chose to work with him or her. That is all there is to it. If you do not want help from any doctor, don’t seek them out or seek them out and don’t listen to them. It’s your dime.
Like weing, I do not see your argument here. Nobody is requiring you to take any AIDS treatment. Nobody is requiring AIDS patients to take any treatment. Whether they want it or not is THEIR decision, it really doesn’t matter what you think of it.
And by the way, it is nobody’s job to prove to you that gravity exists either or the color blue or Mongolia. If you chose to disbelieve. So be it. Good Luck with that.
Alison gets the award for best use of an asterisk in a SBM comment.
a humorous rearrangement of lizkat’s quotes…as per her(?) quotes
“I have never been involved in AIDS research. There has not been, as far as I can tell, the kind of substantial high quality research that would normally be required by science-based medicine. I would very much like to read case studies that illustrate this. I could not find any. I have been looking! And no one here provides helpful clues! It bothers me so much that these wonderful drugs are doing such wonders for people. I just don’t trust the drug companies and have seen many examples of their sleaziness.”
ok, joking aside (and the obvious sarcasm intended in the 2nd to last sentence) I (perhaps we…or some) get it. you are a skeptic, you exist alone on an island of doubt, impenetrable to various biases, coming to your own bold, fresh, evidence based, hard-nosed, tried and true, put through the wash, conclusions. great, all contributors should be the wiser for your “challenge to authority.” however, if you wish to actually learn something, i would advise to go read something (a lot of things…all things). this has been an exercise in masochism; i would venture to say that no one has learned a thing (about AIDS anyway).
No one has provided any good evidence or reasons for their approval of the AIDS drugs. No one has even described an example of a patient who was dying from AIDS, went on the drugs and recovered and lived relatively normally for many years.
++++++++++
LIZCAT! YOU ARE WILLFULLY IGNORING MY RESPONSE TO THIS CALL FOR EVIDENCE AND CLINICAL EXPERIENCES. I HAVE POSTED THEM SEVERAL TIMES. HERE IS ONE
http://www.impactaids.org.uk/lancet363.htm
(Sorry for shouting folks, I didn’t want lizcat to miss it yet again!)
I brought up the subject in response to Dr. Tuteur’s glowing praise for the treatments.
++++++++
Actually, it wasn’t even in her list of top 20 medical advances off the top of her head – which also says something.
I was the one who raised HIV/ADIS treatments as a ‘modern medical miracle’ (of course, I don’t think it’s literally a miracle) – and one brought about through challenge to authority (not science).
micheleinmichigan,
“Alison gets the award for best use of an asterisk in a SBM comment.”
Damn, you beat me to it!
=====================
Alison,
“I am unlucky enough to have developed a serious disease. I am lucky enough to have access to doctors, people who have been to medical school, treated thousands of patients, understand how tests work and know how to interpret research; as such they are essential collaborators. I am also lucky enough to be literate and to be able to go some way to educating myself on topics that interest me. If I had delayed seeking help for my serious illness until I had given myself the equivalent of a medical school education and residency by googling the internet* I would be dead today. If I had the capacity to be a doctor myself, I would have gone to medical school. I don’t and I didn’t.”
* This is not possible, by the way. Just so you know.”
Spot on!
In that paragraph you have encapsulated, and exposed the myth of, “informed choice”.
Congratualtions!
LizKat,
Moment of truth.
You have HIV/AIDS.
At this point in time, you are not going to be able to improve your knowledge of your illness after all the internet “education” you have already given yourself so you may as well give your decision now:
Do you take HAART?
Yes or no?
My attitude about medical doctors is that they have access to certain diagnostic tests and technology, the ability to write prescriptions and the skill to do certain kinds of procedures. I cannot do those tests myself or write those prescriptions. I can’t do surgery on myself, obviously.
As for the person who said she doesn’t have the ability to become an MD — that is exactly the kind of meek attitude that certain old-fashioned doctors love to see. It’s ridiculous.
From what I currently know about HAART, BillyJoe, no I would not advise you to take it if you havee AIDS. My opinion could change depending on whether anyone here ever provides good evidence for it.
Since no one has yet, I doubt anyone will.
My opinion could change depending on whether anyone here ever provides good evidence for it.
+++++++++++
Why are you ignoring the evidence? Please look at the links I’ve posted! Won’t you comment on them?
http://www.impactaids.org.uk/lancet363.htm
(Um, thanks folks.)
Lizkat and anyone else, you might be interested in http://boards.medscape.com/.29f3af03/ .
Mark Crislip (who commented above) is an ID (Infectious Diseases) doctor. His blog Rubor Dolor Calor Tumor is carried by Medscape, which anyone can access. (You have to register, but it’s free.) It’s technical (I don’t understand most of it) but it’s the best illustration I’ve seen of how doctors approach problem-solving. He’s well aware of the problems – more problems than his patients would be able to discover by googling – that’s his job. And he has to figure out the best way to help. Often he doesn’t have a really good solution; sometimes he does.
Note that by definition the cases he discusses have been referred to a specialist – possibly lots of specialists – because other doctors don’t know what to do. So it would be false to conclude that “Dr Crislip can only make an educated guess so doctors are just guessing so my guess is just as good as anyone else’s and doctors don’t do anything.”
And note that because of his speciality, most of what he can do for someone is choose the right antibiotic or antimycotic or antiretroviral or whatever. Lifestyle counselling isn’t going to fix a fungus ball in someone’s kidney, and if their own immune systems were up to the job his services wouldn’t have been called in. So it’s a narrow view of medicine: doctors generally do many other things, but that’s what Dr Crislip does.
Disclosure of COI: my father’s life was saved by an ID doc when he came home from Bangladesh with paratyphus that he had been unsuccessfully trying to treat with Cipro.
“My attitude about medical doctors is that they have access to certain diagnostic tests and technology, the ability to write prescriptions and the skill to do certain kinds of procedures. I cannot do those tests myself or write those prescriptions. I can’t do surgery on myself, obviously.
As for the person who said she doesn’t have the ability to become an MD — that is exactly the kind of meek attitude that certain old-fashioned doctors love to see. It’s ridiculous. ”
Oh good grief. I figured the existence of people with “reflexive doubt” surely was exaggerated (as compared to the number who reflexively trust)… but you are proving every point in the original post.
“My attitude about medical doctors is that they have access to certain diagnostic tests and technology, the ability to write prescriptions and the skill to do certain kinds of procedures. I cannot do those tests myself or write those prescriptions.”
Why didn’t you says so in the first place? Why, even a child can write a prescription and anyone can do the procedures by just observing the mechanics of them. Why bother to learn the basic sciences and clinical sciences and go through years of residencies and fellowships? They are obviously not necessary.
lizkat – “As for the person who said she doesn’t have the ability to become an MD — that is exactly the kind of meek attitude that certain old-fashioned doctors love to see. It’s ridiculous.”
Actually, not everyone has the ability to become an MD for all kinds of reasons (financial, intellectual, emotional, psychological). Not everyone can afford the very lengthy training it takes to be an MD, not everyone can pass the basic entry exams and finish the necessary science to train as an MD and some people faint at the sight of blood and are horrified by the things the human body does when not healthy. So, no, not everyone can become an MD and it has nothing to do with them being “meek”. And some of us just didn’t want to become MDs and wanted to focus our lives on other things that interest us. While I may well have the ability to become an MD (at least intellectually and constitutionally), I chose not to. I have no difficulty accepting that my friends who are neuroscientists and medical researchers know more than me about their specialization, just as I know more than them about mine. We often discuss each other’s areas of expertize but only a fool would assume that simply because one has the potential to an expert in an area of study and experience that one IS an expert without the necessary study and experience. Growing up around medicine, neruoscience and psychology certainly made me more knowledgeable than the average person about biology, medicine, the brain/mind and the politics/ethics around medicine but it doesn’t make me a doctor. Even doctors (well, ones that aren’t egomaniacs) don’t assume to be experts in specializations that they’re not trained or experienced in – even if their training may give them more insight that the average person, it doesn’t make them an expert in that field.
lizkat has inadvertently supplied an outstanding example of reflexive doubt in action.
She has emphasized two themes that pervade the philosophy of reflexive doubt: the assumption that only the weak and stupid trust authority and the presumption that lay people can acquire the knowledge necessary for evaluation of complex medical phenomena by self-education.
Indeed, it is possible to rewrite parts of my post to capture why lizkat’s is impervious to scientific evidence and why she insists on her own “expertise.”
So AIDS denialism (about the disease or about efficacy of various treatments), like most forms of “alternative” health is about the believers and how they would like to see themselves, not about HIV and not about effective treatments. In the socially constructed world of AIDS denialists risks of treatment “outweigh” any possible benefits. Individuals are divided into those (inferior) people who are passive and blindly trust authority figures and (superior) denialists who are “educated” and “empowered” by taking “personal responsibility”.
Similarly, the purported “risks” of ARV’s and HAART express cultural anxieties over expert systems and the concommitent devaluation of self “education.”
It is discouraging to see a scientific skeptics’ web site promoting blind faith in authority, and the enthusiastic acceptance of treatments without RCTs.
My attitude about medical doctors is that they have access to certain diagnostic tests and technology, the ability to write prescriptions and the skill to do certain kinds of procedures. I cannot do those tests myself or write those prescriptions. I can’t do surgery on myself, obviously.
Firstly, can you say “frustrated drug seeking?”
and since we are paraphrasing lizcat.
‘My problem with doctors is that they refuse to act as mindless tools catering to my wishes (informed or otherwise). They should meekly give me the prescriptions, tests and surgeries I tell them to, regardless of what education, common sense or ethics dictates.
If insurance companies deny payment for these treatments they are facists. If I suffer negative effects from the treatments, I can always blame the doctor.’
Ok weing, I’m sorry. MDs also have specialized knowledge. But I still do not have blind faith in their advice.
[Similarly, the purported “risks” of ARV’s and HAART express cultural anxieties over expert systems and the concommitent devaluation of self “education.”]
Wow. You really don’t think these drugs have risks. Incredible.
“promoting blind faith in authority”
Rejecting your outlandish and unsupported claims is not “blind faith in authority.” It is merely rejecting your outlandish and unsupported claims.
YOU are the only person who has invoked “authority” and it is typical of the grandiosity of CAM believers and conspiracy theorists to imagine that their “ideas” represent a bold and brilliant challenge of authority. They merely represent nonsense and defiant behavior.
Lizkat, it’s not that the drugs don’t have risks. It’s that you will never believe that it’s possible for the benefits to be worth them, whereas people who have access to both science and patients believe the benefits are often more significant than the risks. Patients who take the medications obviously find that the risk/benefit ratio works for them.
If it’s not possible for a risk to be outweighed by a benefit, then we must assume that the “risk” is not something quantifiable, like diarrhea, mood swings or neutropenia; it must be something more abstract. For instance, “cultural anxieties over expert systems.”
*** *** ***
In related news, a friend learned yesterday that his doctor doesn’t recommend continued chemotherapy; he thinks my friend should be concentrating on quality of life issues now. (That is, end-of-life issues.) My friend is 35 and was diagnosed at 33. So his surgery and chemo probably ended up buying him two additional years. The kind of chemo and surgery he got are not for the faint-hearted, but they were worth it to him.
I though I’d share something positive and exciting regarding patient advocacy and involvement with science – and the power of non-profit medical research. Not all medical research has a profit motive or is conducted by Big Pharma, in fact much of it doesn’t and isn’t.
This is a remarkable non-profit research project that focuses on ALS
http://www.als.net/
And a site developed by the same people that provides patient support and allows people to compare their experiences of treatment, disease progression and so on. I think it’s a brilliant initiative on many levels, I’d be curious how some of the SBM bloggers view it…
http://www.patientslikeme.com/
And a TED talk by the man behind it…
http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html
Like it or not, information technology has already changed the practice of medicine in a million and one ways. The question is whether the response is reactionary and fearful of change or proactive so that the changes are constructive and serve all involved – patient and doctor – in the best way possible.
“[O]nly a fool would assume that simply because one has the potential to an expert in an area of study and experience that one IS an expert without the necessary study and experience.”
Aye-aye, Fifi!
It’s perhaps relevant to point out the difference between faith and trust. Faith is unearned, we believe in someone or something even though we have no evidence. Trust is earned, we believe in someone or something because there is evidence that they walk their talk, and can do or are what they claim.
I don’t have faith in medicine, science or doctors. I do trust that science – when practiced ethically and not corrupted by corporate interests – is the best way to study and understand physical reality and the objective world (and can give us huge insights into our subjective experiences). This is because I’ve seen science do this repeatedly and even overcome ideological biases that are prevalent in society. I don’t have faith in science, I do trust the scientific method to be the best means for studying the objective world. I don’t have faith in medicine, however I do trust unbiased researchers to do their best to understand what they’re researching and I do trust specific doctors based upon my experience with them. However, Big Pharma has earned my mistrust (and I do question any doctor who is uncritical and/or unaware of how commercial interests can bias science and medicine and who dismisses some of the unethical behaviors of Big Pharma and only focuses on Big sCAM). This doesn’t mean I think drugs are evil, I just think that the commercial developers can’t be trusted to not fudge the science or exploit and try to manipulate people they see as “consumers” (and I’d mistrust a doctor who viewed me as a consumer rather than a patient too).
As long as you are also critical and aware of how government interests can bias science and medicine and not dismiss the unethical behavior of big government too, I have no problem with your ideology.
[Rejecting your outlandish and unsupported claims is not “blind faith in authority.” It is merely rejecting your outlandish and unsupported claims.]
I have not been making any claims. I have expressed skepticism regarding some of your claims. And your whole post was about how patients should have faith in MDs, rather than try to figure things out for themselves.
[YOU are the only person who has invoked “authority” and it is typical of the grandiosity of CAM believers and conspiracy theorists to imagine that their “ideas” represent a bold and brilliant challenge of authority. They merely represent nonsense and defiant behavior.]
You often write, angrily, without ever reading what a commenter said. I NEVER said I was a CAM believer. I said the opposite. And I am NOT any kind of conspiracy theorist!
My objections to the AIDS treatments is not nonsense. I have some good reasons. I am not an MD but I might understand how to analyze research better than some MDs, who may be clinicians but not researchers.
This blog is about basing medicine on treatments that have been studied carefully with high quality research. My objections are related to the fact that some, or most, of the AIDS treatment research does not appear to be high quality.
Because of patient advocacy groups, and because of financial incentives, these drugs may have been rushed through the approval process.
Once AZT was approved, after some hasty and questionable trials, placebo-controlled studies were not generally possible, because of ethical concerns.
My point here has been pretty simple, and it has been answered with anger and insults, rather than skeptical logic and science.
I do not believe Amy Tuteur is a skeptic. She seems to think with her emotions and to be a true believer in a certain ideological approach to medicine. I think she is basically pro-drug.
“My friend is 35 and was diagnosed at 33. So his surgery and chemo probably ended up buying him two additional years.”
That is the kind of uncritical thinking we should be discouraging at a skeptics’ blog. You are assuming that he would have died immediately after being diagnosed, How can you possibly know that?
“Lizkat, it’s not that the drugs don’t have risks. It’s that you will never believe that it’s possible for the benefits to be worth them, whereas people who have access to both science and patients believe the benefits are often more significant than the risks.”
My point has been, again, that it is very hard to know. If a patient is diagnosed with HIV, when their CD4 count falls below a certain critical level they are given HAART. The assumption is that without HAART they would have soon progressed to AIDS.
My question is, simply, how can we know? There might be important genetic differences between patients that would cause some to get AIDS and others to remain healthy.
The scientist who discovered HIV says that a healthy immune system can usually fight off HIV. So maybe there is something about patients who progress to AIDS that goes beyond HIV infection. Some other factor that contributes to HIV to cause AIDS.
If something like that is true, then we cannot know how often HAART actually does prevent HIV infection from progressing to AIDS.
This is the sort of problem we should be thinking about, rather than reflexively going with the status quo.
I feel like I have to sign each and every post with the reminder that I am a scientific skeptic, not a CAM believer. And I have never heard a conspiracy theory that I believed.
I am a skeptic and I have good reasons to wonder about the AIDS drugs.
And while there is a lack of clear pro-HAART evidence, there is no shortage of evidence for the damaging effects of these drugs. Yes, that would be ok if they could eradicate HIV within a limited time period. But they can’t.
We know that the effects can be severely damaging to all the body’s systems. But we don’t know how extensive and serious the damage might be after decades of use.
We also don’t know how the drugs may effect a patient who is HIV positive but who lacks the other factors (if there are any) required for progression to AIDS.
[ This doesn’t mean I think drugs are evil, I just think that the commercial developers can’t be trusted to not fudge the science or exploit and try to manipulate people they see as “consumers” ]
Right, that’s how I feel about it. That is why I am skeptical about the AIDS drugs. The research is messy and contradictory, and some of it might also be faked or distorted because of financial interests.
Right, that’s how I feel about it. That is why I am skeptical about the AIDS drugs. The research is messy and contradictory, and some of it might also be faked or distorted because of financial interests.
“I NEVER said I was a CAM believer. I said the opposite. And I am NOT any kind of conspiracy theorist!”
You have made it clear that you are a conspiracy theorist by insisting that HIV therapies and antidepressants are scams.
You are also very confused about the meaning of the word “skeptic” as it is used in connection with science. In this setting it has NOTHING to do with being skeptical of authority and it is NOT indiscriminate skepticism. It is NOT an idiosyncratic and selective reading of the scientific literature and it is certainly not bizarre assertions that the risks of treatment for HIV or depression are never justified by the benefits.
Your thinking and claims are hardly original. They are merely recycled drivel from CAM advocates and conspiracy theorists garnished with the usual self congratulation.
“My friend is 35 and was diagnosed at 33. So his surgery and chemo probably ended up buying him two additional years.”
That is the kind of uncritical thinking we should be discouraging at a skeptics’ blog. You are assuming that he would have died immediately after being diagnosed, How can you possibly know that?
I don’t know. That’s why I said “probably.” And no, I’m not assuming he would have dropped dead the minute he declined treatment: he was still walking around. And for that matter, he’s walking around today, though now he uses a cane.
What we do know is that the typical life expectancy post-diagnosis for his type of cancer is about six months, even with treatment. Because he is young and considered more able to tolerate aggressive interventions than an older cancer patient, he was treated very aggressively, both surgically and with chemo.
Nobody knows for sure what will happen, ever. All we can do is play the odds based on the best of our knowledge.
If you think that none of the many thousands of medical researchers and ID doctors around the world have noticed any of the questions about study design being asked on the denialist sites, you are just wrong. It’s unfathomable. How could it be that only the folks who maintain that website have noticed that there is no evidence whatever that anti-retrovirals prolong lives? What kind of special powers do you have that make you able to notice problems that nobody else can see, even people who have spent years being trained to notice problems with research?
You keep bringing up the lack of RCT trials. There are many. You want to say that the only valid RCT trials are against placebo. This is only true if the standard of care is nothing.
Let’s go back to the parachute analogy. You notice all these people jumping out of planes and smashing into the ground and dying. You think that maybe there could be a way to slow their fall. So you put together some rudimentary parachutes, give them to some randomly-selected plane-jumpers and see what happens. The death rate drops from almost 100% (interestingly, not everybody dies when they leave a plane without a parachute*) to, say 80%. You think you’re on to something, because your parachutes seem to be saving about 1 person in 5. So you keep fiddling with your design, and you keep trying it out. You randomly assign opening and non-opening parachutes to plane-jumpers. For those people with opening parachuntes, the death rate from jumping out of planes drops to 50%, 10% and then 1%. The death rate for people with non-opening parachutes stays stuck at right around 100%.
When you have a parachute design that is 99% effective in saving lives, what are you going to compare your new, improved model to? A non-opening parachute? Or the current, 99% effective parachute?
Are you really going to tell us that it’s not possible to learn anything by comparing the new, improved parachute to the best available model? That the only valid base of comparison is a non-opening parachute?
Let’s say that you relax a little bit and decide that you will use the best current model of parachute to test your new, improved model against. You think it will be more ethical. So now all plane-jumpers get funcitioning parachutes; it’s just a question of which model.
By using this methodology you eventually come up with a parachute that saves lives 99.999% of the time. How are you going to test the latest and greatest model? Unless your new and improved model is seriously defective, you would need hundreds of thousands of plane jumpers to compare death rates. If you substitute rates of broken legs or rates of getting tangled in trees to compare one model of parachute to another, that’s a sign of victory for your rigorous parachute testing model.
If someone starts a website explaining that Lizcat doesn’t look at death rates when she tests her parachutes, and that her test design is invalid because it doesn’t include a control arm with non-functional parachutes, therefore there is no reason to think that her parachutes are effective at all, and in fact they are cumbersome and expensive, and we know that some people do survive jumping out of a plane without a parachute,* and that therefore anyone who uses a parachute when they jump out of a plane is a meek, unskeptical victim of Big Parachute, how seriously should they be taken?
http://www.popularmechanics.com/science/air_space/4344036.html?page=1
weing – Of course I’m critical of political corruption too, why else would I discuss it here when it seems relevant to SBM? (Though you and windriven seem to get upset when I do since it’s often corporate corruption of government by Big Pharma and Big sCAM that I bring up, something you don’t seem to find problematic.) I guess in some ways wanting science and medical research to be as free from corruption and bias as possible is ideological or at least idealistic. However, it seems quite in line with the scientific method that is very specifically designed to try to eliminate or at least minimize bias. I highly doubt we’ll ever see eye to eye since I’m, by nature and nurture, prosocial or collectivist (I grew up with “first do no harm” and the idea that doctors have a social/ethical responsibility) and you seem to be individualist of the Randian variety. (Speaking in game theory terms here, which have little to do with being conformist or original in the way “individualist” means in general usage – it has to do with how one socializes and navigates relationships with others and society.)
lizkat – “I feel like I have to sign each and every post with the reminder that I am a scientific skeptic, not a CAM believer. And I have never heard a conspiracy theory that I believed.”
The reason why I’m skeptical regarding your claims to be a “scientific skeptic” is that you’re not in the least bit swayed by the evidence and you trot out all kinds of disproven ideas promoted by Big sCAM while constantly proposing that Big Pharma is engaged in a conspiracy. If you walk like a duck and quack like a duck – and DNA tests keep coming up as duck DNA – it’s pretty likely you’re a duck. A duck claiming to be a moose is still a duck! So, until you actually start acting like a skeptic instead of just acting like a denier who keeps repeating crap pushed by Big sCAM, people are going to be skeptical of your claims to be a “scientific skeptic”. (It’s also worth mentioning that a skeptic doesn’t need to be a “scientific skeptic”…adding “scientific” doesn’t make anyone more of a skeptic. Unless, of course, you simply mean you’re skeptical regarding science all together as a means to understand the physical and objective world.)
Lizkat = pec? The same “how can we possibly know if these people were actually helped by teh drugz?” that pec always dragged around.
Fair enough. I grew up in a socialist state and acquired an aversion to it. Anyway, it’s not medicine. I prefer to stay out of ideology.
“You have made it clear that you are a conspiracy theorist by insisting that HIV therapies and antidepressants are scams.”
I NEVER insisted that! As I said, you do not read what commenters write. I think most people would agree that antidepressants are overused because of marketing. And I said that they are not a wonderful cure for mental illness. That is not the same as saying they are a scam!
And I said I am skeptical about HIV drugs, which is very different from making a blanket statement that they are scams! You are very found of blanket either-or statements. There is no ambiguity in your mental world.
“You are also very confused about the meaning of the word “skeptic” as it is used in connection with science. In this setting it has NOTHING to do with being skeptical of authority “”
Wow. You know what — Dr. Tuteur is the kind of close-minded true believer I swore I would never try to reason with again.
NOTHING to do with being skeptical of authority! Well then what in the world is skepticism supposed to mean?
If we are skeptics then we question all sorts of claims, made by all sorts of organizations and industries. We question claims from the government, from pharmaceutical companies, from CAM practitioners, and also — yes that’s right — from mainstream medicine.
“You have made it clear that you are a conspiracy theorist by insisting that HIV therapies and antidepressants are scams.”
I NEVER insisted that! As I said, you do not read what commenters write. I think most people would agree that antidepressants are overused because of marketing. And I said that they are not a wonderful cure for mental illness. That is not the same as saying they are a scam!
And I said I am skeptical about HIV drugs, which is very different from making a blanket statement that they are scams! You are very found of blanket either-or statements. There is no ambiguity in your mental world.
“You are also very confused about the meaning of the word “skeptic” as it is used in connection with science. In this setting it has NOTHING to do with being skeptical of authority “”
Wow. You know what — Dr. Tuteur is the kind of close-minded true believer I swore I would never try to reason with again.
NOTHING to do with being skeptical of authority! Well then what in the world is skepticism supposed to mean?
If we are skeptics then we question all sorts of claims, made by all sorts of organizations and industries. We question claims from the government, from pharmaceutical companies, from CAM practitioners, and also — yes that’s right — from mainstream medicine.
And to be clear, I’m no fan of Big Pharma and drug companies have been caught conspiring many times. There’s good evidence that they’re untrustworthy and need to be highly regulated. That doesn’t mean that all drugs are worthless, it just means that relying solely upon studies conducted by Big Pharma isn’t a good idea. It’s a bit like assuming all CAM treatment modalities are entirely worthless in a reactionary way without investigating whether there may be some plausibility. In many cases…well most really…there isn’t but there are exceptions like certain forms of meditation (which simply harnesses neuroplasticity, it’s not magic and it’s through studying it using science that we’ve come to understand how it works).
weing – Fair enough, I grew up in social democracies and am pretty happy with them as a social system. Living next to the US during the rise of Randian ideology has made me pretty averse to unfettered capitalism. Certainly ideology isn’t medicine but, in the real world, it does influence the practice of medicine, and medical and scientific research, so it’s bound to get touched on when discussing SBM and protecting it from all kinds of ideological attacks (be they academic, governmental or commercial).
@ lizkat
““You are also very confused about the meaning of the word “skeptic” as it is used in connection with science. In this setting it has NOTHING to do with being skeptical of authority “”
Wow. You know what — Dr. Tuteur is the kind of close-minded true believer I swore I would never try to reason with again.
NOTHING to do with being skeptical of authority! Well then what in the world is skepticism supposed to mean?”
yea, you do confuse it. once again:
being skeptical of *authority* as the default position (or evoking authority as an argument) is an “appeal to authority.” if you leap to the institutions, organizations and experts as a first recourse, you are committing a generalized ad hominem fallacy.
evaluate claim -> evaluate evidence for claim -> reevaulate claim. from there you can decide to trust (to evoke fifi) that source, or not. from what I can see, you distrust Dr. T as an “authority” based on lack of agreement and unapologetic bluntness that fails to considers your ego.
if you cannot possibly fathom “what in the world skepticism is supposed to mean” if *not* oriented towards authority itself, you are COMPLETELY and repeatedly failing at logic in its most basic form.
lizkat – I actually find you and Dr Tuteur to be two sides of the same coin when it comes to ideology masquerading as scientific skepticism.
And, yes, it’s ridiculous for Dr Tuteur to claim that skepticism doesn’t include questioning authority when it’s warranted. Just as ridiculous as when you claim you’re simply being skeptical when you’re being equally as reactionary. I suspect you’re both entirely convinced that you’re skeptics and advocates of SBM and you both seem to be unwilling to consider for even a second that you may be being blinded by your biases.
fifi
from someone who has studied rand, this rise you speak of is not based on any sort of objectivism rand might condone. it has been warped into a money oriented religion and a tool for power. selective interpretation at its very worst. sorry, a mere quibble.
I always thought the appeal to authority dealt with a situation where because someone is an authority in one field, their claims in other fields carry the same weight. Sort of like Linus Pauling’s claims regarding Vitamin C.
crap! was that an appeal to authority? well, you may certainly question my assertions! im no expert, just hate to see it trashed cause of the abuse it has inspired
weing,
hmm, good point. possibly both? here’s my favorite from a chiro friend:
“see, [insert professional athlete here] uses chiropractic, shouldn’t you?!”
pretty good rundown
http://en.wikipedia.org/wiki/Appeal_to_authority
fifi
“ridiculous for Dr Tuteur to claim that skepticism doesn’t include questioning authority when it’s warranted. ”
example? if you perhaps suggest a debunked “authority” then that is not an appeal to such. the doubt of claims have preceded doubt of the authority itself.
You don’t consider Greenspan and Friedman Randians? I’m no expert on the subject but they certainly associated with her and seem to have adopted her philosophy. However, I’m no expert on Rand so it may well be that they twisted her philosophy to their own ends. (But wouldn’t that be Randian within itself?) She always just seemed like a narcissist justifying her narcissism to me – though an interesting character from a distance. And, of course, we’re veering out of SBM here.
fifi
“However, I’m no expert on Rand so it may well be that they twisted her philosophy to their own ends. (But wouldn’t that be Randian within itself?)”
that underscores the complete mischaracterization of the philosophy. first and foremost, she advocates agreement that was free from force or fraud, an agreement between rational consenting individuals in the choice of matters. likewise, its an interesting *philosophy* and its not actually grounded by psychological research of any kind (or really any data at all).
in a nutshell…
her books were merely a vehicle for her philosophy. in theory, her philosophy centered around cardinal virtues and values, reason, purpose and self esteem. she also called for the abolition of religion and subserviency of any kind along with advocating the empowerment of the self (often misconstrued as “selfish” as we have defined it in our societal norm structure – which she does no favors by calling it the same). she elevated science and reason while bashing religion, entitlement and ignorance.
she merely referenced capitalism as the economic system “that best respects the individual’s right to pursue personal property” (which ultimately is a truism, regardless if that is whats best overall) and was more an advocate of ideas such as intellectual property and right to pursue ones own interest, while never inflicting ones will on another. this automatically includes environmentalism (john galt would have signled handedly eliminated carbon emissions with his brilliant invention) and spoke out against the corporation for it weakened the decision making power of the individual (think trader joes, in and out etc. for great orgs that abide by this and basically our financial melt down to those who do not). if she rejected AGW, for instance, should would be in conflict with her own philosophy considering the science, reason and evidence leading to such claims.
there are obvious conflicts as to her opposition to regulation and taxation, but, ultimately she never advocated wealth and power for its own sake (and her literary antagonists always did just that) but as a tool to shape your own destiny (i.e. create, invent, start a business etc.). likewise there is the “is-ought” problem…but again, its not exactly science.
the fauex rand-capitalists have surely chosen their whims over their self-interest and chosen money hoarding for its own sake as opposed to a tool for creation and elevation of man as a god (i.e. man qua MAN). in the sense that we are self-determiners and should act as if there is nothing but our own sheer will and intellect to guide us.
that being said, its not science, its not supported by an ounce of data and is basically a nice story for self-empowerment. anyone who “lives their life by it” is really no different than a jihadest adhering to the teachings of allah. rand wouldn’t advocate that in the slightest. i suppose this all makes me a “rand apologist”
Just to be clear about the term “authority”. There’s a difference between someone being “an authority” and questioning or accepting their expertise as an individual and “questioning authority” – the latter tends to mean questioning bodies that claim to be authoritative (be they professional organizations, government or any other body that has power). Dr Tutuer does the latter herself when she questions a medical association’s position, for instance. Clearly being skeptical does including questioning authority, even if it does also recognize the specialized knowledge that an authority on a particular subject has (not that individuals shouldn’t be questioned when they’re making unfounded claims either).
I admire Amy’s patience and dedication. However, for myself I think it is an utter waste of time to try talking to people who equate the risks of C-sections and circumcision with the risks of having health care practitioners practicing medicine in hospitals who reject science, believe in magic and maintain that when good, solid scientific studies refute their beliefs that the studies are wrong and their beliefs are right. It is rather like comparing the total destruction of a large city with the burning of a small house that results in a few injured people.
While pseudo-intellectuals may think it is very clever to question “experts” or doctors simply because they are experts or doctors, real intellectuals look at the evidence and draw their own conclusions. When they don’t have the necessary resources to do that, they find and trust those who do.
Thanks EricG, I appreciate the explanation and hearing your perspective.
lizkat said, “your whole post was about how patients should have faith in MDs, rather than try to figure things out for themselves.”
For crying out loud! That is NOT what the whole post or any part of the post was about!
Once again you respond to what you wanted to think Dr. Tuteur wrote rather than to what she actually wrote. I don’t know whether to pity your lack of comprehension or be angry at your willful distortions.
fif – understood. i would posit that her “questioning authority” would be presupposed by claims (based on x y z evidence) that she disagreed with…tomahto…tomayto…
final note on rand, which I think is important.
she had a penchant for engineers, chemists, musicians, architects, doctors etc. and her heroes were, as a consequence, primarily of such professions. She despised critics (as in, professional critics), politicians, economists (armchair thinkers in general), salesmen and board executives. If you could fabricate something of your own hands (or mind) and offer it as a tangible service to another, you’re good (further including mechanics, teachers, drivers and trades of all types). If your bread is necessarily buttered elsewhere, you’re bad. Interestingly enough, those that often employ objectivism to justify free market capitalism are strangely often of the latter, hence my umbrage with the mischaracterization. Anyway, thanks for listening
Alison, “If I had delayed seeking help for my serious illness until I had given myself the equivalent of a medical school education and residency by googling the internet* I would be dead today. If I had the capacity to be a doctor myself, I would have gone to medical school. I don’t and I didn’t.”
Billy Joe, “In that paragraph you have encapsulated, and exposed the myth of, ‘informed choice’.”
I don’t think so. On two levels. First, as I understand it, informed choice involves being informed about and understanding the known risks and benefits involved when making specific choices so that you can decide for yourself if you want to take the risk that comes with those choices. IMO, a very large portion of the population is able to evaluate such things when the information is presented to them either by others or by doing their own research although I know from your previous comments that you disagree with that.
Second, there are many cases in which people who have graduated from medical school either haven’t learned all they should have, have forgotten a lot, haven’t kept current or are biased for some reason whereas many patients can research the topic and discover what is known, unknown and suspected for themselves. Also, doctors are required to study and know a great deal about many things whereas patients usually present with a specific problem or two. The fact that they only have to learn about their specific problems gives them a big advantage over the doctor especially when their problems are rare.
I am speaking from personal experience. I was permanently disfigured by an MD when I was very young. I am not elderly. The powerful lesson I learned was to look at the evidence. I strongly suspect that at least half the people reading this are more intelligent and most certainly more articulate, although perhaps not more motivated, as I am. Yet at least one prominent dermatologist considers me “the world’s leading expert” on argyria. My webpage on the topic has been cited in medical and scientific journals. I’ve written an article for a journal. It is human interest not scientific but I did it at the request of the editors while I have refused the request to write a scientific paper on the topic because I don’t think that another one is necessary.
I’ve also met my share of “bad” doctors. An example. One walked into the examining room, stood in the doorway looking at me as if he were afraid to enter, then asked, “Why are you that color?”
I said, “I have argyria.”
From his expression I knew he didn’t know what that was. So I explained there was silver in my body that got there because an MD had given me a silver drug when I was a child. The arrogant idiot responded, “I knew that. I just wanted to see if you did.”
What the fool apparently didn’t know or knew and didn’t think that I did, was that there are other things that cause a similar discoloration most of which are fatal. He could not possible simply look at me and know for sure that I had argyria.
That is one example of many which leads me to believe that just because one has earned an MD does not mean that one has actually reviewed the relevant evidence and based one’s treatment decisions upon it although I suspect that the more common an illness is the more likely it is that the physician is following an accepted standard that is evidence based.
Alison to Amy, “I care about your style because you do not communicate well.”
Alison, when I find someone doesn’t communicate well, I don’t care about their style. I just don’t read what they write.
In my post above, “I am not elderly,” should read, “I am now elderly.”
” I think most people would agree that antidepressants are overused because of marketing. And I said that they are not a wonderful cure for mental illness.”
No one said that antidepressants are a cure for mental illness. Not anyone in the comments in this blog. And as a consumer of mental health services for nearly 30 years I can say that not once from any mental health professional, medical professional, pharmaceutical literature, consumer advocacy group, or anyone else for that matter has EVER said that antidepressants or other psychiatric medication is a CURE for mental illness.
They’ve said that medication (and most times that medication and therapy) are effective treatments. But effective treatment is not the same as cure.
In fact the very first doctor who ever ever realized I had a mental illness told me — “there is no cure, no magic pill that will make everything better. There are medicines that can help but it takes medicine and a lot of work in therapy for this to be effective”
And I’ve seen some crappy therapists and psychiatrists in my day too so I don’t automatically trust everyone who is a doctor.
Lizkat, since you like making outrageous claims like the one I quoted I’m going to go out on a limb and say one of your big problems is reading comprehension.
Otherwise how could mistake “effective treatment” for “cure” and also miss the 4 or 5 posts with links to information when you claimed no one gave you a clue where to find information.
Rosemary, “IMO, a very large portion of the population is able to evaluate such things when the information is presented to them either by others or by doing their own research although I know from your previous comments that you disagree with that.”
I most certainly do not disagree with that. There are concepts that are difficult for human beings to grasp (one example is probability theory) but all that means is that doctors need to use all their creativity when presenting information so that it can be received in a way that people can use. About half the doctors I have consulted have been able to present me with the information I need in a way I can use it at a level that is appropriate to me. (The other half I have had the luxury of being able to ditch after the first meeting.)
What I disagree with is assuming that a doctor cannot filter the huge amount of information about the human body and about patients to present the appropriate information for the context, and that someone without either a medical background or particular expertise can.
Knowledge and specialization matter.
The problem I ran into was not being able to access a specialist who was on top of the literature. The first time I was prescribed medication the doctor literally said “I don’t know much about this, but I have some free samples of [drug] so you might as well try it.” The guy acted like a jerk, but I have to give him credit for being honest with me that he didn’t know. It was not a success.
When I finally did access a specialist, I was treated with compassion and respect, I was offered a treatment plan I could use and that worked for me, and I was involved in decision-making at every step.
You are absolutely right that not all MDs have sufficient knowledge and specialization about everything. But they do have more than the guy who pushes pills at the health-food store. It’s the lack of knowledge, or the will to refer to independent sources, that’s the problem in either case.
Your point about rare conditions is very well taken. MDs often say they are thrilled when their patients with rare conditions can educate them. (Whether this is always true or just something they say to look magnanimous probably varies with the individual.)
Little anecdote sort of à propos of informed patients:
Many years ago I went to see a doctor at a local clinic. He was young, warm and friendly, and asked me what brought me there. “I have a urinary infection.” Well, he said, he would decide that. Why did I think I had a urinary infection? “I have a fever, I‘m peeing every twenty minutes, and it burns when I pee.” Well, that certainly sounds like a urinary infection. If you can give me a urine sample I’ll take a look. How often do you have urinary infections? “Never. This is the first time.” Oh, well if this is your first time, how do you know you have a urinary infection? “[boggled] I have a fever. I’m peeing every 20 minutes. It burns when I pee. What else would you like it to be?” He conceded my point.
I took two lessons away from that encounter. One — the easy one — is that even nice, friendly doctors can be jealous of their expertise and don’t like to be told things. One must be very tactful when communicating with doctors so that they can come to their own conclusions. When asked, “What brings you to the ER today?” the correct answer is not “I cut off my hand with a tablesaw.” It is, “I think there might be something wrong with my hand. Could you take a look? Here, it’s in this bag.” Respecting this aspect of doctor communication etiquette can lead to great frustration when the doctor misses crucial points. (Hence the “etiquette, schmetiquette” lessons I learned in later years.)
Anyway. The second lesson was that I had to wonder about the general patient population. If something I assumed was self-evident (fever + frequent burning urination = urinary infection) was something that he assumed was exclusive, specialized medical knowledge, what does that say about the education of most people he worked with? Maybe they were all well-informed and he just wasn’t paying attention. This is certainly possible. Or maybe many of his patients don’t know the most basic things about the way bodies work, and he had learned the hard way to assume absolutely nothing. This is possible too. I’m guessing it’s some mix of the two, and I have a lot of respect for professionals who are able to engage creatively, respectfully and effectively with their patients about something as critical and complex as their health.
It’s clearly not easy, because so many doctors can’t manage it. To those who do — kudos.
I recently had a baby, and encountered TONS of questionable information about natural childbirth.
It seems to be based on three ideas: The reflexive or default questioning of authority that is discussed here; nostalgia for a distant “better” past; and the belief that a certain experience will create a transcendent or redeeming spiritual/emotional experience.
The second idea is expressed in statements like “it’s been done this way for thousands of years” and “it’s the way our ancestors did it.” As an archaeologist, I have to say that we have very little objective knowledge of how our ancestors or anyone else’s handled pregnancy and childbirth (except we know that they frequently died). Underlying the idea is the assumption that the “natural way” has been perfected somehow. I take the position that we are large-brained, bipedal hominids, a situation that creates an inherently risky and dangerous childbirth situation. It’s “natural” in my mind to use our big brains to reduce those risks in any way we can.
The third idea is a religious belief, or akin to one.
I got an IV and an epidural, and had an emergency c-section. I am very grateful for all three!
I just wanted to commend FiFi on her post up-thread where you talked about the difference between faith and trust and taking a balanced approach to evaluating claims by drug companies as well as the competence, credibility of individual doctors or scientific claims.
Just to take it a step farther, realistically that might only be the start of the patient decision making process. From there you go to trying to balance information from overlapping specialities, with different philosophies. Maybe one has earned a higher level of trust and advocated for you, and the other seemed disinterested in the problem but has more expertise in the applicable field. Then you have the question of emerging technology or rare conditions that require a certain level of interpolation from current scientific research.
Today, I had an specialist tell me about a “evidence based” recommendation” to wait on a certain technology. It’s became clear that the evidence does not indicate that technology is unsuccessful. There is not enough evidence to give a high level of certainty when it will be successful or not. Level of risk is there (low) level of monetary cost (high). Also, because my son has a relatively rare situation, the evidence will probably never be an exact match. While I was happy for the information, I ended up wondering where that left our decision.
Regarding Government Influence/Corruption
Just a reflection on how the government does not have to behave corruptly to influence science. For instance I was talking today with our doctor about how Medicaid coverage (for children) varies per state. So state with the best Medicaid coverage have the ability to research emerging (FDA approved) technologies more. With children and a technology that will be used primarily in schools maybe the the quality of the schools will influence the result of the medical research, but school quality can be very different per state. It would be best to correct for quality of education somehow, but how are the results being skewed by this funding disparity? (Disclaimer: I am not a scientist, I have a BFA, feel free to correct my poor assumptions researchwise.)
Last observation based on the whole skeptical/reflexive doubt discusssion. Just as faith is to trust as paranoia is to skepticism.
Alison and etiquette smetiqette OR how not to step on the toes of your doctor.
It seems like I struggle with this each time I go to my doctor. The best time was when I went in to my (at that time, pretty new) doctor with a list of internet printed thyroid symptoms and told her “I have a lump in my throat when I swallow, I have these symptoms. I think I have a thyroid problem” and she replied “We’ll see about that!” This is not my typical style, I really am not overbearing with doctors, but I had just about had it with my various symptoms and my sister, who had thyroid issues, kept saying “I felt exactly like that when my thyroid was going.” I couldn’t take it any more.
The doctor did note a inflamed thyroid very quickly, so luckily we did not have much contention for long.
I learned a valuable lesson that day. Blame it all on your sister. Now I say “I’m feeling this way, my sister thought it might be this. I wouldn’t suggest it, but she’ll hassle me if I don’t bring it up.” I’m sure it works with husbands, wife, mother’s, etc.
@Michelle:
I agree. I guess I haven’t quite figured out the relationship, the balance between skepticism, doubt, denialism, questioning authority, and faith vs trust vs. doubt. I too have been taught in 20 years of education that “questioning authority” is generally a good thing, the flip side of the logical fallacy “appeal to unqualified authority.” With the understanding that questioning does NOT mean rejecting, necessarily.
Feynman, THE ROLE OF DOUBT IN SCIENCE:
http://laserstars.org/bio/Feynman.html
——————————————————————————–
from “What Do You Care What Other People Think?: Further Adventures of a Curious Character” by Richard P. Feynman.
There is also a video of Feynman on youtube called “disrepect for authority.” (how’d that happen… didn’t he die over 20 years ago?).
I also really like this:
http://www.sciencebasedmedicine.org/?p=1
Alison,
“I most certainly do not disagree with that.”
Actually, rosemary was adressing me with that statement
I said your paragraph encapsulated the myth of “informed consent” and rosemary disagreed (see below)
====================
rosemary,
“I don’t think so. On two levels. First, as I understand it, informed choice involves being informed about and understanding the known risks and benefits involved when making specific choices so that you can decide for yourself if you want to take the risk that comes with those choices. ”
I agree with that definition.
But what I am saying is that this is not actually “informed consent” but “the illusion of informed consent”.
You don’t know the risks and benefits, the doctor tells you what they are. Unless you have been shown the details of how these risks and benefits were arrived at, and unless you understand what you have been been shown by having sufficient background knowledge, how do you know they are accurate? And, if the doctor has provided you with accurate information, how do you know he has not slanted the information in such a way as to almost force your choice, or to amke your choice for you (remember Dr. Amy and her 600 dead babies one of which could be yours – and most of the time the effect is not as obvious as that example)
“IMO, a very large portion of the population is able to evaluate such things when the information is presented to them either by others or by doing their own research although I know from your previous comments that you disagree with that.”
I do disagree with that. You , me, and others commenting in this blog are a rather unusual breed of people in that we happen to be interested in researching these things for ourselves. Some of us even have the aptitude to do a good job on occasion. Your occasion was “argyria” and for a good reason. My occasion was prostate cancer, also for a good reason. But even we cannot do this for all diseases. Even GPs cannot do this and must rely on specialists.
As for the general population, to be honest, they generally do not have a clue. Nor are most of them interested in knowing about disease other than the sexy stuff they are misinformed about by the media.
“Second, there are many cases in which people who have graduated from medical school either haven’t learned all they should have, have forgotten a lot, haven’t kept current or are biased for some reason”
I agree, bit I think that is part of my argument.
How can you give informed consent if you have not been given the correct information?
“whereas many patients can research the topic and discover what is known, unknown and suspected for themselves.”
I would say *few* patients would be able to do that adequately enough to make an informed decision. For a start, they would need to know how to evaluate a clinical trial. What percent of the population have the interest, time, and aptitude to do that?
“Also, doctors are required to study and know a great deal about many things whereas patients usually present with a specific problem or two. The fact that they only have to learn about their specific problems gives them a big advantage over the doctor especially when their problems are rare.”
I agree with you.
Let me just suggest that you with your argyria, and me with my (well, my father’s) prostate cancer, are not the norm.
“That is one example of many which leads me to believe that just because one has earned an MD does not mean that one has actually reviewed the relevant evidence and based one’s treatment decisions upon it…”
Which just means that choosing on the basis of that doctor’s information is not “informed choice”.
In my opinion, the vast majority of patients in the vast majority of circumstances really only have the illusion of making an informed choice. It is also my opinion that a good doctor – one who knows from his extensive knowledge and research what the best treatment should be, for this patient with this problem – would ensure, by the way he presents this information, that the patient made the “correct choice”.
regards,
BillyJoe
@ BillyJoe
Imperfect informed consent (which is the only kind we’re ever going to exercise – none of us have complete knowledge) is surely better than the absence of informed consent. The kind of paternalism that you suggest should operate is actually very bad for science-based medicine, since it encourages clinicians to ignore uncertainty, and discourages them from truly considering the endpoints that matter most to patients.
For example, in your scenario a doctor might assume that patients of a particular type (younger, with children) care mostly about prolonging life, while patients of another type (older) care more about quality of remaining life and reduced pain – and that assumption may inform notions of the ‘correct choice’ of treatment. But actually, you can’t know whether the individual patient in front of you conforms to your assumptions about types of patients, unless you have an honest discussion about the options and trade-offs. Not to mention the many situations in which the doctor, with his or her extensive knowledge and research, ought to be uncertain about the best treatment. Again, honest dialogue with patients on this issue would educate them about the need for more widespread clinical trials and encourage their participation in reducing that uncertainty.
Can I recommend chapter four of Testing Treatments, which has some very good points to make about the unequal ethical standards for clinical trials versus ordinary medical practice.
http://www.jameslindlibrary.org/pdf/testing-treatments.pdf
The distinction between trust and faith is an incisive observation. However, I would caution that there is a very important distinction to be made. There is a big difference between trust in medical science and trust in an individual doctor.
Trust in medical science tells us nothing about whether a particular doctor ought to be trusted. A doctor is a person subject to the same strengths and weaknesses of any individual. He or she might have good diagnostic skills or not. He or she might be up to date with the medical literature or not.
That’s why second opinions are critically important and sometimes even third opinions. You want to know what “medical science” says about your condition and possible treatments. An individual doctor may or may not accurately transmit that information. Talking to other doctors gives you a much better sense of your options than talking to only one doctor.
Unfortunately, patients tend to decide whom to trust based on how nice the doctor is. A doctor with good bedside manner inspires trust, even when it isn’t warranted. And a doctor who is a total jerk may be the most knowledgeable and skilled person in the field.
Doctors themselves recognize the benefit of second opinions in both formal and informal settings. M&Ms (morbidity and mortality conferences) are a fixture in surgery and surgical subspecialties. It is a formal way for doctors to share opinions about particular patients. Oncologists have enshrined the benefits of additional opinions in Tumor Boards, requiring every cancer case to be presented to a group of specialists from multiple fields in order to craft the best treatment recommendations for patients.
Informally, doctors constantly “run things by” other doctors, a shorthand form of second opinion.
You can trust “medical science” but in order to know what “medical science” shows, it is often best to consult more than one doctor.
micheleinmichigan,
Yeah, it’s hard to know how to walk the line. I certainly understand the doctor needing to make their own diagnosis. I could have thought I had a urinary infection for all kinds of reasons. Maybe my grandmother appeared demented when she was in the nursing home, but it turned out it was just a urinary infection and she got all better when it was treated. And my beloved is complaining that my memory is really bad these days, so I’ve decided I have a urinary infection and a course of antibiotics will fix everything. I think that’s a question of bedside manner: there must be more tactful ways to explore what someone thinks is wrong with them. But even when the doctor is tactless I can rationalize it to myself that this is the humiliating but necessary part of the encounter, and just grit my teeth and endure my role as idiot.
It’s really annoying though when you have classic symptoms of something very ordinary, the doctor confirms your self-diagnosis, and instead of congratulating you on your acumen they accuse you of lying about coming to the classic and ordinary conclusion on your own. That one is totally poor bedside manner.
If you’re in a situation where the doctor is very clear that they are the one who is driving, and you’re afraid they’re going to get all weird on you for volunteering your concerns – or even information – how do you coax them into asking the questions that are important to you? Ideally the doctor would take responsibility for being the one who is driving and at some point say something like, “Are there other questions I should be asking?” but that must be very hard to do when they need to keep their appointments short and focussed.
Dr Tuteur – “The distinction between trust and faith is an incisive observation. However, I would caution that there is a very important distinction to be made. There is a big difference between trust in medical science and trust in an individual doctor.”
Thank you for acknowledging this. While I do believe that the scientific method is the best means to discern the objective world, I’d argue that “medical science” has not always been trustworthy and it can also be important at times (please note the qualifier “at times”) to question “medical science” to discern whether it really is well done, unbiased science or someone merely dressing up their opinion, product or ideology in “medical science” to claim authority or absolute certainty. After all, the other bloggers here at SBM do question “medical science” at times to discern whether it’s good science that is being practiced and it’s a common practice within medical research to question.
Now, this isn’t at all the same as a reactionary “science can’t be trusted” approach from a lay person and that’s not what I’m promoting. I’m promoting that even those of us who are supporters of SBM – be it professional or lay supporters – need to be aware of our own personal biases and ideologies, and how they may be informing what we present when we discuss SBM. We need to be self critical rather than assuming that because we support SBM that we are automatically free from bias, we need to be careful of not putting on SBM as an identity, an armor against the uncertainty of the world and life. If we forget that science can be wrong at times and that we’re really just working with the best information/evidence available to us at this time, and become incapable of self reflection or saying “I/we don’t know”, then we are indulging in faith. While the scientific method is the best means to discern objective reality it is not infallible – since it is us fallible humans who practice science. This doesn’t mean that science isn’t a good or even the best tool we have for understanding our bodies and the physical world, it means that if we look to it for absolute certainty we may well be inadvertently indulging in faith. If we are to defend SBM, it means also being vigilant for the corruption and misuse of science by industry, governments, ideologues and, yes, even ourselves.
Medical science has come a long way in the last 40 years as religious and sociocultural biases have been seen for what they are, something that has allowed us to truly discern the world and ourselves as we are (and has opened up all kinds of new questions as we discover things such as neuroplasticity and how mind and body interact). Why? Because people both within and without science and medicine started to question orthodoxies and challenge assumptions and ideological beliefs that claimed to be science (and we got better tools, one shouldn’t discount technology’s influence). To get upset or offended because some people don’t unquestioningly trust medical science is to forget the history of medical science in favor of a fantasy of science as infallible and it’s a particularly pernicious thing to do if we assume that we too are infallible or immune to bias.
If we are to defend SBM, it means also being vigilant for the corruption and misuse of science by industry, governments, ideologues and, yes, even ourselves.
++++++++
I particularly like the reminder that we need to be vigilant with ourselves. To quote Feynman (second time today!) “The first principle is that you must not fool yourself—and you are the easiest person to fool. So you have to be very careful about that. After you’ve not fooled yourself, it’s easy not to fool other scientists. You just have to be honest in a conventional way after that.”
Plonit – Thanks for the very on point Feynman quotes. I also appreciate how you point out that questioning something isn’t the same as rejecting it.
“The distinction between trust and faith is an incisive observation. However, I would caution that there is a very important distinction to be made. There is a big difference between trust in medical science and trust in an individual doctor. – to end of post”
Very well put. I can not actually say whether patients DO trust likable doctors or not-trust abrasive doctors, but I can certainly say for myself, I have to guard against this tendency regularly. And can you really guard adequately, or do you just spiral into a whirlpool of uncertainty?
For one thing you can say, well the reason I don’t like said practitioner is that they keep skewing up, so I can’t trust them anyway. On the other hand I find myself in the confirmation bias zone. I don’t like said practitioner, so every skew up is magnified. I like another practitioner so I tend to laugh off their mistakes as peculiarities.
Or alluding to Plonit’s post. Maybe you just don’t like the first practitioner because they do not listen and seem to solely approach the medicine with the goals they think you should have rather than having a discussion about your goals and your concerns and making recommendations based on that.
And of course as weing mentioned, it’s easier to trust the practitioner that you WANT to believe. So you have to compensate for that somehow.
I guess these concerns become amplified when you have medical areas with sparse evidence and the recommendations you get may have more to do with personal technology profiles (early adopters, early majority, late majority, etc) than the evidence available.
I course it’s comforting to think, no matter what decision you make there are significant people in you life (family, friends, school personnel) who will think it is a crackpot, irresponsible decision.
So maybe you just make your decision based on what you are going to regret deciding more 3,5,10,18 years down the road? Heck I don’t know.
It may be clear that I am trying to work through an actual medical decision by blabbing about it incessantly online.
I thank SBM for their bandwidth and tolerance.
screwing up that is.
skewing up? I don’t usually misspell my swear words. It’s either a Freudian slip or a lack of coffee.
“I also appreciate how you point out that questioning something isn’t the same as rejecting it.”
This also applies to the physician questioning the patient’s self-diagnosis of UTI, etc.
weing – Of course it does, the doctor/patient relationship is a two way street (or is when it’s at its best). In the anecdote you’re referring to, the issue being brought up wasn’t that the physician questioned the patient’s self diagnosis, it was how it was done. In the end both the patient and doctor seemed to come to an understanding. Some doctors – certainly not all by any means – can get rather bent out of shape when someone comes into their office with a self diagnosis, even when it’s correct. Just as some patients can get bent out of shape if a doctor doesn’t confirm their self diagnosis, even when it’s erroneous. This is why the clinical practice of medicine is as much an art as it is a science, it doesn’t just involve facts but also the art of effective communication. It’s why GPs so often end up being translators for their patients when they do to see specialists if the specialist is a bad communicator. It’s also why it is important for a doctor to be aware of their own personal biases so they’re not imposing them upon their patients (or to be honest about their personal biases so that the patient can take that into consideration). Since the doctor is the professional and in the position of power – not only because of their training but also because we’re all prone to feeling vulnerable when there’s something going wrong with our body or mind – the onus is on the professional to use their power responsibly and not to further a personal agenda that may interfere with a patient’s ability to make as informed a choice as possible. Nobody’s perfect, of course, which is why a little bit of humility and compassion all round usually results in a better outcome for all involved.
“how could mistake “effective treatment” for “cure” and also miss the 4 or 5 posts with links to information when you claimed no one gave you a clue where to find information.”
When medical researcher feel satisfied that they have developed an “effective treatment,” even if it is not considered to be a “cure,” they might continue down the same path, instead of considering a change of direction. And I did not miss those links. They were not the kind of information I asked for. No one could provide clear and good quality evidence for how much AIDS drugs prolong life and improve health.
Even if someone had a friend who was sick with AIDS, then started taking HAART and went on to live a relatively normal lifespan and was able to function relatively normally — that would be interesting evidence.
But no one could provide even that.
I have read a lot on the subject. Of course there are tons more to read and I have limited time. But I do see certain kinds of confusing statements repeated.
For example, an article recommends starting HAART earlier than was previously recommended, before the CD4 count drops below 200 (or whatever). The evidence shows that 5 years survival is much better for AIDS patients who start HAART early.
The problem with that kind of statement is that starting HAART earlier automatically determines that 5 year survival will rates will improve. Even if the drugs did nothing.
I saw a claim that because of HAART, AIDS patients can now expect to life a normal life span. It turned out they based the claim on the fact that an HIV patient who starts HAART earlier (before they even have AIDS, by they way) is no more likely to die within the next 5 years than a healthy person.
But we have been told that the HIV latency period can be 10 years or more. So why would we expect an HIV patient to not survive 5 years?
There is serious confusion in the AIDS literature. Sometimes HIV and CD4 levels are considered synonymous with improved health, even though some studies showed that HIV and CD4 improvements may not correlate with improved health.
And by the way I do not doubt that HIV causes AIDS, or that HAART may be helpful in some ways. If HIV had nothing to do with AIDS and if HAART had no benefits whatsoever, there would be no controversy.
On the other hand, it is possible that decreasing HIV and raising CD4 levels are not as meaningful as the researchers believe. It is possible that HAART does not prolong life or improve health to the degree that we are led to think. It is possible that the adverse affects of HAART are much worse than is currently believed, especially long term.
Without even knowing the long-term effects of HAART, some are claiming it allows patients to live a normal lifespan. They can’t possibly know that. And, as I said, it could be at least partly an illusion based on the fact that it has always been typical for HIV patients to survive more than 5 years after diagnosis.
Scientific research is difficult to do and difficult to interpret, even for experts. Not every MD has training or experience in research or statistics. That is why I think I sometimes notice problems that not everyone notices.
weing, of course it does. Did I not make that clear?
I wonder if it is useful (or possible) for SBM to address itself to the science of health care delivery.
For example, it is often asserted that Dr Knowledgeable Jerk is ‘better’ [by what measures?] than Dr Clueless-but-Kind. However, I’m not sure that we know much about the effectiveness of these two types of clinicians – certainly not in a scientific sense. (Not to mention comparison with the effectiveness of the clinicians never raised in these discussions, “Dr Knowledgeable-and-Kind” and “Dr Clueless Jerk”).
Dr Kind may be a more effective practitioner than Dr Jerk, all other things being equal, especially if being kind helps your patients feel understood, make good decisions, adhere to treatment etc….
But no one could provide even that.
+++++++++++++
I asked you specifically whether you thought that the stories of individuals from the work of Partners in Health in Haiti and Rwanda were faked. These are the stories of people who were on the brink of death from AIDS and have recovered to the extent of living a full asymptomatic life as a result of HAART.
Plonit,
YES! and in a nutshell. Thanks.
Dr Kind may be more effective due to communication, But sometimes you can even grow kinda fond of Dr. Jerk.
Dr. Jerk can be much better at cutting through administrative difficulties or red tape…as long as he or she is on your side.
A few years ago there was a study gauging if communication ratings given to doctors by patients correlated to number of malpractice suits. The report I heard on NPR indicate they did (lower communcation ratings more malpractice suits). Sorry, no source and no idea how well run the study was.
But ultimately there really should be some sort of test like the MeyerBriggs. I’d be nice to know if my doctors are KJ, CK, KK or CJ going in.
Regarding Lizcat
I think a politician (not my favorite) once said. “There he goes again”.
“I asked you specifically whether you thought that the stories of individuals from the work of Partners in Health in Haiti and Rwanda were faked.”
Can you re-post the link? I took the link and looked at the page and all I noticed was one before and after photo and brief story. I didn’t see any details that would convince anyone that it was a real lasting recovery. If there were lots of other stories, with details about length of treatment, etc., then I did not see them.
One point to consider is that an AIDS patient who is near death from opportunistic infections could experience a dramatic, but temporary, recovery if the AR drugs eradicate those infections. So you could get remarkable before and after photos, without a meaningful recovery.
And yes it is possible that keeping AIDS-related opportunistic infections and cancers in check with AR drugs does allow patients to live relatively normally for a while. This is something I do not claim to know.
But it is interesting to consider that the drugs might be working in a way very different from what is assumed. And again, I do not claim to know, and am just wondering and being skeptical.
Isn’t Myer-Briggs pseudoscience?
lizkat, it’s there if you want to follow it up. If you want it to be fed to you, and each time spit it out – that’s your business.
Very helpful of you Plonit. There’s only 350 or so comments to search.
http://www.impactaids.org.uk/lancet363.htm
No, I don’t see a lot of case studies on that site. Just one person who was emaciated before HAART and not emaciated after one year of HAART. There was no information about other patients, and no specifics about this one.
So if that is and example of good clinical evidence showing that HAART works, it probably doesn’t work very well.
lizkat, you are pathetic. You have google, presumably. Try: “Partners in Health”. Try WHO, try Cochrane reviews, try UNAIDS, try looking at some of the many reports and studies linked to upthread. You wouldn’t have to trawl through the 350 or so comments on here if you had looked at them the first time they were mentioned, would you?
You refuse to be convinced by clinical trials (having some very high threshold for evidence, do you actually use ANY medicine?) and ask instead for examples of individual cases where HAART works. They are offered to you (in various forms – and for goodness sake, you have google – can you google “Partners in Health” can’t you, if you want more information about the extent and successes of their work) and you reject them.
You wouldn’t have to trawl through 350 comments if you had bothered to read the many links provided upthread when they were first offered, would you?
lizkat, I’m sorry – the first dressing down would have sufficed, I’m afraid my comment appeared ‘lost in the net’ and I got impatient.
Plonit – Isn’t Myer-Briggs pseudoscience? –
MicheleinMichigan -”But ultimately there really should be some sort of test like the MeyerBriggs. I’d be nice to know if my doctors are KJ, CK, KK or CJ going in.”
Sorry, the last paragraph, I was joking. I think it didn’t come through in the tone. Sometimes I get sick of the smiley faces, they look so perky.
As to MeyerBriggs, I have no idea. I think of it as kinda a parlor game. I think there is some science to a break down of personalities on a scale of introvert to extrovert, but I don’t know if there is any correlation between the personality testing results and how people perform in real life. Just my uneducated opinion.
“One point to consider is that an AIDS patient who is near death from opportunistic infections could experience a dramatic, but temporary, recovery if the AR drugs eradicate those infections.”
Lizcat, Anti retroviral drugs work against the retrovirus — HIV.
Antiretroviral drugs do NOT work against bacteria. If someone has PCP, antiretroviral drugs will NOT eradicate that infection.
The only way antiretroviral drugs would help is by suppressing HIV and countering its effects, to let the body recover to the point where it could fight off infection. That is, the only way they could help is by doing what research tells us they do. Fight a retrovirus. And even that would only work if HIV does what research tells us it does. Suppress the immune system.
“You refuse to be convinced by clinical trials (having some very high threshold for evidence, do you actually use ANY medicine?) and ask instead for examples of individual cases where HAART works.”
That is NOT true! I said I could not find RCTs or convincing studies of any kind. So I was willing to accept case studies, which here at SBM are not usually considered scientific evidence.
And if found your link and re-posted it, and looked at the page again. What you said was there wasn’t there.
You refuse to be convinced by clinical trials (having some very high threshold for evidence, do you actually use ANY medicine?) and ask instead for examples of individual cases where HAART works.
That is NOT true! I said I could not find RCTs or convincing studies of any kind. So I was willing to accept case studies, which here at SBM are not usually considered scientific evidence.
And if found your link and re-posted it, and looked at the page again. What you said was there wasn’t there.
You refuse to be convinced by clinical trials (having some very high threshold for evidence, do you actually use ANY medicine?) and ask instead for examples of individual cases where HAART works.
That is NOT true! I said I could not find RCTs or convincing studies of any kind. So I was willing to accept case studies, which here at SBM are not usually considered scientific evidence.
And if found your link and re-posted it, and looked at the page again. What you said was there wasn’t there.
Lizcat,
Follow this link:
http://search.medscape.com/medscape-search?queryText=aids
You’ll have to register, but it’s free, and you get access to the kind of stuff that doctors read on weekends when other people are watching tv.
Searching on AIDS brings up 6,961 documents. Even if only 1% are the kind of article you’re looking for, that still gives you 70 articles to chew on.
Enjoy!
Also at the same sourc is the antiretroviral therapy resource centre:
http://www.medscape.com/resource/antiretroviral-therapy
Here are some observational studies (available by following the link I already provided up thread). Hope that helps!
http://content.nejm.org/cgi/content/abstract/338/13/853
http://journals.lww.com/aidsonline/pages/articleviewer.aspx?year=2004&issue=05210&article=00009&type=fulltext
http://www.ncbi.nlm.nih.gov/pubmed/12853195?dopt=Abstract
Just and observation on patient decision making and Lizcats argument.
For every treatment plan there is a decision. To treat or not to treat (that is the question). You are balancing risk of treatment with benefit of treatment and or risk of not treating.
When you chose a treatment is should be (I would say it usually is) because you BELIEVE the benefit out weighs the risk.
When you argue about the treatments that other people choose or BELIEVE that they are misguided. You do not take on their risk. Although, karmically, who knows.
To put it simply, that fact that Lizcat has nothing to lose is an integral part of her belief system.
In fact at this point, if she reads all the data she is risking the very obvious fact that she might have to conclude she is wrong and be embarrassed. So the benefit in not reading the studies or opening her mind is obviously much greater than her risk in not believing HAART works.
So Lizcat has successfully balanced her risk, benefit and come up with a plan that works very well (for her.) Thumb Up!
Sorry, this was very obvious to everyone following the discussion. I just wanted to get it out in the open.
Thank you Alison, but that is exactly the kind of articles I have been reading. It does not help me at all, because I cannot find anything definitive that doesn’t suffer from the problems I mentioned.
“if she reads all the data she is risking the very obvious fact that she might have to conclude she is wrong and be embarrassed. ”
How could I be embarrassed? You don’t know who I am! And in any case I am motivated by curiosity. Even if you did know me, I would rather get this resolved just so I could stop wondering about it. Yes, I would prefer to think the drugs are no good, because I do hope the researchers will try to find something that doesn’t have such horrible effects on the body. I hate to think of those patients suffering, even if their life may be prolonged (and I still don’t know that).
Do I want AIDS patients to die? Of course not! I want them to have some better options. If nutrition and sanitation are better options in Africa, as the scientist who discovered HIV suggests, then i would much rather see them get that, instead of toxic drugs.
Maybe treating the secondary infections is also a better option.
If it turns out that there is good evidence that the drugs substantially prolong life, then I would think that maybe people should take them, so they can hang on to life in case a better treatment comes along.
This may help you, lizkat – or maybe not
http://photos.pih.org/inforesources/Articles/Lancet_2001_community-based%20HIV%20care_Farmer-et-al.pdf
I must say that you have very very high standards lizkat. Do you hold all medicine to the same high standards?
Evidence-based medicine means using the best available evidence. It doesn’t mean ignoring the best available evidence in favour of no evidence at all, just because the best available is not the best that it’s possible to imagine.
Yes, I’m sure trials could have been better. Just about ANY trial could have been better. But I don’t think they were so flawed as to be useless either.
RE: Meyers Briggs
interesting, a step into my field for a devilish moment
I won’t begin to pretend I’m any sort of expert, but I do know a thing or two about personality inventories and they are…useful*.
For instance, I am currently researching one for a particular position where neuroticism has been demonstrated to predict burnout, agression, violence etc. its not the MB, but they are all somewhat looking at the same thing, different iterations of the “Big 5″ personality features.
MMPI, WAIS, NEO PI-R, Wonderlich etc. are all widely utilized and validated measures of personality/intelligence factors. The Meyers-Briggs definately teeters the scale towards pseudo science, the wikipedia on validity and reliability actually aptly describes its position in the literature.
http://en.wikipedia.org/wiki/Myers-Briggs_Type_Indicator#Validity
its often used as a “team building” and/or “self-discovery tool” within organizations. I have never heard of it being utilized in any sort of meaningful selection or assessment capacity.
*if you think sbm is messy and complex…look at the psych literature!
I hate to think of those patients suffering,
++++++++++++
Well, HAART is very significantly better than early ARVs wrt side-effects.
MB is based on Jung, isn’t it? That’s pseudosciency enough for me.
I’d love to know how these tests are validated as measures of personality/intelligence. For my sins, I have had to work a bit on teaching strategies – and have come up against more than my fair share of quadrants and axes and types that theorists seem to have sucked out of their thumb. None of which had validity as far as I could tell from the educational literature. Perhaps I have an irrational aversion to such neat typologies as a result.
Lizkat,
You read all 7,000 articles and concluded that none of them were in the least tiny bit informative?
Wow. You’re fast.
“interesting, a step into my field for a devilish moment, etc”
thanks EricG, I might check out those other measures you mentioned. Perhaps next time I can give a slightly informed rather than uneducated answer.
“You read all 7,000 articles and concluded that none of them were in the least tiny bit informative?”
There isn’t any need for sarcasm. I read some of the articles on HAART, and they were no different from others I have read. I had asked, since many of you here are so convinced that HAART is good, if someone could provide a little evidence that doesn’t have the sort of problems I mentioned.
I got plenty of sarcasm and insults, but no logical scientific replies.
And by the way, it looks like we have set a record for number of comments on an SBM post. I guess we have to give Amy Tuteur some credit for stirring up controversies.
You read all 7,000 articles and concluded that none of them were in the least tiny bit informative?
There isn’t any need for sarcasm. I read some of the articles on HAART, and they were no different from others I have read. I had asked, since many of you here are so convinced that HAART is good, if someone could provide a little evidence that doesn’t have the sort of problems I mentioned.
I got plenty of sarcasm and insults, but no logical scientific replies.
And by the way, it looks like we have set a record for number of comments on an SBM post. I guess we have to give Amy Tuteur some credit for stirring up controversies.
I got plenty of sarcasm and insults, but no logical scientific replies.
+++++++++++++
Oh, that’s not fair. Have you looked at the links for HAART trials from the page on antiretrovirals at AIDStruth yet?
Oh, and since Amy Tuteur didn’t even mention HIV/AIDS in her post, and then her top twenty medical advances, I don’t think the credit really goes to her….
Lizcat “How could I be embarrassed? You don’t know who I am!”
Sorry, I was projecting. I know I would be embarrassed if I had pursued it to the extent you have, finally read the reports and had to admit I should have read things earlier with an open mind. Even in front of stranger. But that’s just me.
“If nutrition and sanitation are better options in Africa, as the scientist who discovered HIV suggests, then i would much rather see them get that, instead of toxic drugs.”
Ok, you hope that improved nutrition and sanitation can kill retroviruses, or at least prevent them from doing damage in an infected person. I understand that this is an appealing idea. However, many very well-fed people contract HIV and go on to develop AIDS, so we already know that isn’t the answer. I have never heard of clean drinking water being able to treat a disease someone already has. Perhaps you are thinking that if someone with a suppressed immune system is never exposed to disease that they will be ok, and that clean drinking water is sufficient to prevent exposure to disease. Unfortunately this is not the case either.
“Maybe treating the secondary infections is also a better option.”
That idea we know for sure is wrong. Before antiretroviral drugs were invented, treating secondary infections was all anyone could do. People died. Fast. Lots of them. Even in developed countries where they could get treatment for their secondary infections.
“If it turns out that there is good evidence that the drugs substantially prolong life…”
There is good evidence. You might be frustrated because recent articles about treating HIV/AIDS all reference treatments that have already been proven to be effective. They take it for granted. It’s kind of like going for a parachute-testing flight when they are comparing two kinds of parachute. The testers already know that parachutes save lives, so they aren’t trying to prove that any more. But if you are new on the plane you haven’t seen that evidence for yourself and the tests they are conducting now won’t prove to you that jumping out of a plane is more likely to be fatal without a parachute than with one. You’d need to start at the beginning for that.
Unfortunately Medscape only goes back to 1997. You need to start in 1982 or thereabouts to read the descriptions of AIDS patients and follow the discovery of HIV and read all the discussions at the time about whether it was the cause or just one contributor so you can understand the logic for identifying HIV as the cause. You would need to understand Koch’s postulates. And then you would need to follow the development of all the treatments, even the ones that were abandoned because they were unsuccessful, so that you could understand why they were unsuccessful. You would read how researchers were very motivated to create more effective, less-toxic drugs and how they were used and accepted.
I can’t feed you that information. It sounds like a doctoral thesis in the history of science. If you need to see it all for yourself then you have a lot of work ahead of you. But we won’t be able to help you with it: it’s too much, and you’ll have to go to school to do labwork to be able to understand some of what the articles are talking about.
“… then I would think that maybe people should take them, so they can hang on to life in case a better treatment comes along.”
That sounds completely reasonable and I think a lot of people here would agree with you. I also think that if you met some people hanging on to life with HAART that you might be surprised that they are not as miserable as you imagine.
The reason I think that today’s antiretrovirals are an effective treatment is not that I’ve done all this research myself. I haven’t. It’s that I know how science works. I know that scientists are competitive and always looking for a better idea. I know that doctors who have been practicing since the early 80s and have seen untreated AIDS patients and the introduction of early therapies are pleased to have newer, more effective and less toxic drugs to offer their patients.
And I know that in general, the scientific method works. The germ theory is a product of the scientific method. So is the internet. So is CBT for depression. So are the mucous and basal temperature methods of fertility control, and ORT for diarrhea. If the scientific method were unable to solve problems creatively we wouldn’t have any of these things. We’d still be wearing amulets against the evil eye and leaving offerings at the shrine of the local god, relying on withdrawal, and witholding food from sick babies and watching them die of dehydration. We’d all be puffing away on our cigars and pipes.
We know that the scientific method is powerful enough to solve very difficult problems creatively. When HIV was just discovered I was convinced it must only be part of the story. I didn’t believe that there could really be a new disease, just new combinations of old diseases. That’s my conservative temperament — I’m not an early adopter — but it was not completely unreasonable at the time because HIV was new. The tires hadn’t been really well kicked yet. 26 years later, if the combined creativity of scientists all over the world has not been able to replace HIV as the cause of AIDS with a better idea, I have no excuse not to concede that HIV must be it.
How old are you, Liz? Where do you live? I’m 45 years old and I live in a city. Twenty years ago I used to be able to walk around my neigbourhood and see people with AIDS. I was pretty ignorant, so all I could really recognize was kaposi’s sarcoma, and sometimes make a guess about someone emaciated who looked like he might be gay, but AIDS was visible even to me. That’s just not the case any more. It’s not that HIV is gone. It’s that the HIV+ people in my neighbourhood are not developing AIDS at the rate they used to.
Lizkat: “I got plenty of sarcasm and insults, but no logical scientific replies.”
Regrettable, perhaps, but inevitable when someone with no obvious expertise in a field makes propositions that require the medical profession to be either mentally incompetent or corrupt.
You had to be comfortable with such opinions when you proposed that your personal inability to come across solid evidence for present HIV treatments entitled you to a completely neutral view on their efficacy. We had to be either not as smart as you, or in someone’s pocket.
“Regrettable, perhaps, but inevitable when someone with no obvious expertise in a field makes propositions that require the medical profession to be either mentally incompetent or corrupt.”
The entire medical profession. Nobody has escaped. Every single researcher incapable of asking questions; every last doctor unable to interpret a paper. That’s simply not possible.
@ lizkat I was going to make a post to rebute the things you said in reply to my comments but I’ve decided not to.
Not because I agree with a single thing that you’ve said, but because I don’t believe that you are true skeptic and I don’t believe you are even reading the comments otherwise you wouldn’t keep misunderstanding what people are thinking.
I don’t believe you are a true skeptic. I think you just want to rebel for attention.
You’re an energy creature sucking up everyone’s time and attention and I’m not going to feed that anymore.
In fact I suggest everyone takes this advice: Do Not Feed the Energy Creature.
Lizkat said, “… then I would think that maybe people should take them, so they can hang on to life in case a better treatment comes along.”
Most people want to hang on to life for its own sake. The idea that one would want to live only in case a better treatment came along does not correspond to reality. In fact, it reminds me of certain discussions with pec before she was banned.
She also suggested that prolongation of life was not a worthy goal, only cure was.
HAART clearly prolongs life (and quality of life). Anyone who claims she went to the literature and didn’t find any such evidence either has defective reading comprehension or is wearing blinders.
Anyone who claims she went to the literature and didn’t find any such evidence either has defective reading comprehension or is wearing blinders.
And yet you cannot provide a single reference.
Have you looked at the links for HAART trials from the page on antiretrovirals at AIDStruth yet?
YES. How many times did I tell you that?
Pmoran and michelleinmichigan
yes, unfortunately those typologies can read more like self-fulfilling horoscopes than personality assessments. I can assure you (and provide citation) that there is necessary science behind most of it (i certainly wont attest to the bajillions of “inventories” that are available).
a simple way to think about how it is accomplished (and this is excruciatingly cursory compared to the real thing) is to basically ask a bunch of questions, do a factor analysis, label the factors, sample some more, factor…an infinitum (essentially).
as a result, the quantification of the Big 5 personality factors have remained pretty stable over the last 70 or so years and have spawned tests (NEO PI-R as my example) that demonstrate reliability at the +.7 mark (good in psych) and validity in a variety of predictive, criterion and construct settings. If anyone is at all interested, the following are citations for very illuminating studies.
NEO PI-R:
Digman, J.M. (1990) Personality Structure: Emergence of the Five-Factor Model. Annual review psychology. 41() 417-440.
Barrick, M.R., Mount, M.K. (1991) The big five personality dimensions and job performance: A meta-analysis. Personnel Psychology, 44() 1-27.
MMPI – a citation good in explaining background and development
Hiller, J.B., Rosenthal, R.B., Bornstein, R.F., Berry, D.T.R., Brunell-Neuleib, S. (1999) A comparative meta-analysis of Roschach and MMPI validity. Psychological Assessment, 11(3) 278-296.
Wonderlic (and others)
Chamorro-Premuzic, T., Furnham, A. (2008) Personality, intelligence and approaches to learning as predictors of academic performance. Personality and Individual differences, 44(7), 1596-1603.
The reason I think that today’s antiretrovirals are an effective treatment is not that I’ve done all this research myself. I haven’t. It’s that I know how science works.
I know as much as anyone about how science works. Why do you think condescension is better than logic or evidence? If there were good quality evidence for the safety and effectiveness or HAART then there would be meta-analyses and summaries, instead of or in addition to the garbled contradictory mess we have now.
No one bothered to address any of my criticisms or reasons for skepticism. Maybe you’re just too trusting.
She also suggested that prolongation of life was not a worthy goal, only cure was.
No Harriet I did not suggest that. But many people agree that when quality of life is extremely poor it is not worth prolonging it at all costs. So the question is what is the quality of life for HAART patients and how long does it usually prolong their lives. If you, or anyone here, had any answer, you would have given it.
And you are also ignoring my main point which was that if researchers are satisfied HAART and similar treatments, they might continue searching in the same general direction. And that would be too bad if there are more promising directions.
you had to be comfortable with such opinions when you proposed that your personal inability to come across solid evidence for present HIV treatments entitled you to a completely neutral view on their efficacy. We had to be either not as smart as you, or in someone’s pocket.
No, maybe just not very skeptical.
Ok, you hope that improved nutrition and sanitation can kill retroviruses, or at least prevent them from doing damage in an infected person. I understand that this is an appealing idea.
I said this was recommended for Africa by the scientist who discovered HIV. He does not think AR drugs are the best option there.
It’s not that HIV is gone. It’s that the HIV+ people in my neighbourhood are not developing AIDS at the rate they used to.
Isn’t it possible that the virus has evolved and changed? Is it possible that many of the people who were most vulnerable to HIV have died? Correlation is not causation — don’t we hear that constantly at this blog? So why is it completely forgotten and ignored when your arguments depend on correlation?
“We had to be either not as smart as you, or in someone’s pocket.
Lizkat: No, maybe just not very skeptical.”
A glib answer which suggests you still don’t understand the reactions to you, or how medical science really works.
Even if there are no rigorously controlled prospective clinical trials showing that HAART prolongs life, that does not leave the likelihood of this being true in the neutral territory you have chosen to occupy because of overt personal biases, and despite an obviously limited access to all the available data.
Other highly objective evidence such as reductions in viral load and better CD4 counts, as well as comparisons of treatment outcomes with historical controls has brought that proposition so close to truth that no such studies are ever now likely to be done, except possibly in special populations. Advances in treatment are sure to be made, and novel treatments discovered, but from hence forth they will be compared with the present standard of care, not to no treatment or placebo.
The same situation applies with many cancer treatments. We have to cope with similar misunderstandings there.
I fully understand your position, but urge you to see science as a weighing up of the likelihoods rather than thinking that staunch skepticism has virtue in its own right. Absolute, complete truth is rarely achieved within medicine, but we can operate so close to it that it would be ridiculous and unethical to act otherwise.
I agree with Tuteur’s piece, but I think much of it could also be fairly applied to some of the medical community claiming the legitimacy of science. There seems to be a tendency towards ‘skepticism’, as an easy version of ‘rationalism’. Yet what people are skeptical of, and what they choose to believe as a default position when there’s a lack of sufficient countervailing evidence is very often guided by their own cultural and personal prejudices.
Having read a number of medical blogs about CFS following the recent news of a possible link with XMRV, it seems widely accepted that it should be assumed that a patients with CFS is psychologically disturbed unless a physical cause for their symptoms has been identified. Surely this works as an example of ‘reflexive doubt’ too? I wish more science and medicine writers would look for the hints of quackery which can slip into mainstream medicine – a consistent failure to do so can look like an endorsement.
Plonit,
“Imperfect informed consent (which is the only kind we’re ever going to exercise – none of us have complete knowledge) is surely better than the absence of informed consent. ”
The truth is that patient’s cannot have informed consent, imperfect or otherwise. But thay can have an “illusion of informed consent”. And having an illusion of informed consent is actually better than not having an illusion of informed consent. It certainly feels better than the feeling of being told what to do.
(By analogy, we don’t have “free will”, but we have an “illusion of free will” and that is certainly better than having neither)
“The kind of paternalism that you suggest should operate is actually very bad for science-based medicine, since it encourages clinicians to ignore uncertainty, and discourages them from truly considering the endpoints that matter most to patients.”
No, I didn’t suggest that. In fact, I much prefer the “illusion of informed consent” that we have now to that paternalistic attitude of a bygone era where we were just “told what to do”. I just think we need to recognise it for what it is.
“For example, in your scenario a doctor might assume that patients of a particular type (younger, with children) care mostly about prolonging life, while patients of another type (older) care more about quality of remaining life and reduced pain – and that assumption may inform notions of the ‘correct choice’ of treatment. ”
Yes, I did mention that the doctor would be taking into account the particular patient (with the particlar version of the illness) that he has in front of him. But that is actually information the doctor uses in order to tailor his advice to that particular patient.
“Not to mention the many situations in which the doctor, with his or her extensive knowledge and research, ought to be uncertain about the best treatment.”
If the doctor is uncertain, how can any information he gives to the patient be of any use to that patient in reaching a decision. He might say: “you can do X, or you can do Y, but the evidence is that there is not really much to choose between them. Flipping a coin is hardly making an informed choice.
“Again, honest dialogue with patients on this issue would educate them about the need for more widespread clinical trials and encourage their participation in reducing that uncertainty.”
Well, I wasn’t suggesting the doctor be dishonest. He would just provide the right information that would insure that the patient makes the correct choice.
“Can I recommend chapter four of Testing Treatments, which has some very good points to make about the unequal ethical standards for clinical trials versus ordinary medical practice.”
I will have a look as soon as I get the chance.
BJ
Amy,
“That’s why second opinions are critically important and sometimes even third opinions. ”
I think you need to qualify that.
You are not going to seek a second or third opinion about a sore throat every time you have a sore throat.
But I doubt that there is even much value in getting a second opinion about a serious illness unless the original doctor rubs you up the wrong way (on the other hand, as a general rule, you would not be able to judge his competence).
What do you do with that second opinion or that third opinion is problematic unless they both agree with your first opinion. So why seek them in the first place?
BJ
Amy,
“That’s why second opinions are critically important and sometimes even third opinions. ”
And they can become very complex. I am in the situation now exploring a surgery for my son who uses a certain children’s hospital. Due his condition he is slated for several surgeries. The different surgeons often suggest combining surgeries to reduce number of times under anesthesia or hospitalized. If I need to leave the team I’m dealing with due to a conflict with one of the surgeons (never happened) or one of the supporting therapists or medical pratictioners that work with the team (has happened) It will mean that we can not combine surgeries, anesthesia or hospitalizations. We would also not have the advantages of inter-hospital record keeping that we have now or a staff that is experienced in my son’s health history or conditions.
To a certain extent, I’m sure this is quibbling, it certainly does not apply to the majority of patients. But it is something to consider.
Even if there are no rigorously controlled prospective clinical trials showing that HAART prolongs life, that does not leave the likelihood of this being true in the neutral territory
Other highly objective evidence such as reductions in viral load and better CD4 counts, as well as comparisons of treatment outcomes with historical controls has brought that proposition so close to truth that no such studies are ever now likely to be done
pmoran,
What you said explains why I have objected to the glowing enthusiasm expressed about HAART. I did not deny that HAART works — I said we have no good evidence that it does. I found problems with the articles, abstracts and news reports that I read, and these problems are serious.
No, I am not demanding absolute proof or hundreds of RCTs. I would like to see even one convincing meta-analysis. Even one convincing study.
I have not seen that. Yes I have limited journal access and limited time. But I think I have familiarized myself with the most important facts. I have seen a lot of raving public relations statements that are simply not backed up by data.
I explained that reducing HIV and raising CD4 may not always give you the information you require. I read studies where these did not correlate with improved health.
I also explained why starting treatment earlier, as is now being recommended, can result in an illusion that onset of AIDS has been delayed.
I understand the kind of terrible problems the researchers face, and the intense pressure to come up with safe effective treatments. But there is such a thing as reality, and it isn’t always cheerful.
I think the reason some of the commenters and bloggers here got so angry at me is that I am poling holes in their hope. They claim to be scientific skeptics, but they can’t live up to the claim when the truth is too unpleasant to face.
Harriet Hall, for example, is usually very critical and skeptical of inadequately tested treatments, sometimes even when they are not CAM. But she brushed off my criticisms of HAART as if they were ridiculous.
Another problem, I think, is that mainstream medicine has gone whole-heartedly in favor of HAART, with no reservations. How can thousands of researchers and MDs be wrong? Well they were wrong about HRT for women, and about aricept, apparently.
I don’t think it’s all the fault of greedy drug companies. I think it’s also the desperate desire for answers, and the sincere intention to save lives. But you know the saying about good intentions.
Lizkat said, “I think the reason some of the commenters and bloggers here got so angry at me is that I am poling holes in their hope. They claim to be scientific skeptics, but they can’t live up to the claim when the truth is too unpleasant to face.
Harriet Hall, for example, is usually very critical and skeptical of inadequately tested treatments, sometimes even when they are not CAM. But she brushed off my criticisms of HAART as if they were ridiculous.”
I brushed off your criticisms not because the truth was too unpleasant to face, but because your criticisms do not reflect the truth as I see it from having followed the scientific literature since AIDS was first recognized. I am a skeptic, but you are a contrarian and a perfect example of the reflexive doubt Dr. Tuteur describes. You are only raising minor quibbles in what is actually a solid body of evidence.
If you applied the same criteria of reflexive doubt to antibiotics for pneumonia, you could question whether they do more good than harm. They all have side effects, and people might recover from pneumonia without antibiotic treatment… but how would we know, when everyone is given antibiotics? You could speculate that maybe the improved outcome for pneumonia was due to other factors like better nursing care and less virulent bacteria rather than to any actual effect of the antibiotics. After all, new antibiotics are not submitted to rigorous placebo-controlled studies; they are only compared to other older antibiotics.
You are only raising minor quibbles in what is actually a solid body of evidence.
Then why isn’t anyone able to explain what is wrong with my criticisms of the HAART research? I did not find a solid body of evidence, and my “minor quibbles” would normally be considered extremely serious faults. If it’s so easy to disprove my arguments, why hasn’t anyone even tried? You resort to name-calling and insults because you can’t come up with a logical argument. I have seen you, and other bloggers here, go over research you don’t like with a magnifying glass, searching for tiny defects. But the HAART research has glaring problems which you happily ignore.
When HIV levels and CD4 counts do not correlate with health status, you have no explanation. When starting HAART earlier is claimed to result in delayed onset of AIDS, you can’t see the obvious logical error.
And you are not bothered by the exaggerated enthusiasm expressed in so many reports and articles. Dr. Tuteur’s statement, that AIDS is now a manageable chronic condition, is typical. I have seen statements that AIDS patients can now expect to live a normal life span. Where is the evidence for that? I have seen other reports saying HAART may extend life by 2 years.
It’s a big contradictory mess. The reason you believe it is because the mainstream is overwhelmingly supporting HAART. You seem to be completely unaware that there is such a thing as a bandwagon effect. But there is, even among scientists.
I don’t want to get into a citation contest, but I think reports that HAART extends life by as little as 2 years are in the minority. This report is more typical:
http://www.hivandhepatitis.com/recent/2008/072908_a.html
“HAART Has Extended Average Life Expectancy of HIV Positive People in Wealthy Countries by 13 Years since 1996″
“These advances have transformed HIV from being a fatal disease, which was the reality for patients before the advent of combination treatment, into a long-term chronic condition.”
“The bottom line is that a 20-year-old individual starting combination ART can expect to live for another 43 years on average, whereas a 35-year-old can expect 32 more years of life.”
There is no logical error in delaying onset of AIDS by early treatment, because appropriate comparisons are made and the lead time bias is corrected for.
The “glaring problems” you see in HAART research are no more glaring than the exactly similar problems in antibiotic research, and most scientists don’t find them so “glaring.”
No I am not getting into a citation contest. I have finally decided it is useless to reason with people who have their minds made up. Those cohort studies are the most problematic. For one thing, many more people were diagnosed with HIV in later eras, because of more extensive testing. So of course the death rate would decline. And this kind of problem is never mentioned in the articles or news releases.
When patients who already have AIDS start taking HAART, the outcomes are very different from when the patients merely have HIV and CD4 below 200, or whatever is the current cutoff. And of course they are able to explain that away — the HIV must be stopped early, etc. But it could just as well be something like lead-time bias. I have not once seen that mentioned.
tut tut Dr Hall, I know it’s hard, but you must stop feeding the beast.
lizkat,
Please comment on antibiotics – do you have the same concerns about them, and if not, why not?
Lizkat: “I have seen you, and other bloggers here, go over research you don’t like with a magnifying glass, searching for tiny defects. But the HAART research has glaring problems which you happily ignore. ”
There is no inconsistency. With the former we are usually being asked to consider propositions that would fundamentally change how we view the universe. These require extremely high standards of “proof”.
Leaving aside a disputed “glaring problems”, the HAART question is whether the evidence is adequate for the immediate practical purposes of medicine. That is really all that is being claimed here. For practical and ethical reasons medicine often has to rely upon less than absolute levels of proof. (Does any science?).
There is little risk to this. Better treatments almost always emerge within a few years, and if shown superior in high quality RCTs they will become the standard of care.
I am not in the above suggesting that present day HIV/AIDS treatment is an example of minimal standards of evidence being applied within medicine. I am simply describing how medicine operates over the long term, even though often teetering on the edge of error.
I understand how science and medicine operates pmoran. It is not true that better treatments almost always emerge. There are many diseases where little or no progress is made. There are types of treatments that wind up being completely discarded.
I can understand using HAART if you have good reasons to think it’s better than nothing (I am not convinced of that). But there is no excuse for the extravagant claims, such as the one made by Dr. Tuteur.
The conventional “wisdom” about AIDS/HIV is that now patients can live a relatively normal life, whereas before an HIV diagnosis was a death sentence.
We really don’t know if HIV was in general a death sentence, and we really don’t know that now patients can live relatively normally.
We really do not know. And using HAART wouldn’t be so bad if at least there were an admission that we do not not how well works. In many cases we don’t even know if it works.
It’s the unfounded and unquestioned claims that I find disturbingly irrational.
One of the most important and difficult challenges of being a skeptic, I feel, is admitting when you do not know something.
And the fact that I am called a “beast” and ignorant, and all sorts of other insults, only illustrates how vicious people can be when their unfounded beliefs are questioned.
I don’t think I have tried to insult anyone here. I didn’t feel a need, because I can use logic and evidence instead of hatred to make my points.
Are you sure you really know that you know that you don’t know and will you admit that you don’t know that you know that you don’t know?
Lizkat said, “We really don’t know if HIV was in general a death sentence, and we really don’t know that now patients can live relatively normally.”
Yes, we really do know.
I’m still waiting for you to comment on antibiotics for pneumonia.
“I also appreciate how you point out that questioning something isn’t the same as rejecting it.”
“This also applies to the physician questioning the patient’s self-diagnosis of UTI, etc.”
That was me, not Plonit. And I agree with weing as well. Questioning is a GOOD thing. Doubt until proven otherwise is the very definition of a skeptic. You can’t qualify it with “doubt is a good thing UNTIL someone questions me as the doctor/authority!” Indeed, some of the problem with media journalism is that they just quote various “experts” without going to the primary source (something I drill into my students’ heads). It’s also important to look at the *consensus* rather than individual doctors who can be wrong or biased.
The problem with LizKat isn’t that she’s questioning, it’s that she’s rejecting the evidence and has absolutely no idea what she’s talking about. Another part of critical thinking is to be able to tell when you just don’t have the necessary synthesis to be able to form an opinion. Like Feynman said in cargo cult science about fooling yourself (and everybody is capable of that, including scientists). It’s rejecting authority just because you can, with no regard to the evidence (aka contrarian).
The question of the safety and effectiveness is important, because the HAART drugs destroy health. So it would be nice to know how many people have their health destroyed in order to save one person’s life. That data would be good to have, I would think. At least a very rough estimate.
And the drugs are given to people who are too poor and uneducated to make their own decision. They trust the doctors. And they are also given to children. That is what bothers me most.
We do not know which cases of HIV infection are likely to progress to AIDS. That information is needed. At least some kind of estimate.
Antibiotics are not taken for life, Harriet, so it is a different problem. As long as they are not over-prescribed they won’t destroy people’s health. And they are probably not quite as deadly as AR drugs.
weeing,
“Are you sure you really know that you know that you don’t know and will you admit that you don’t know that you know that you don’t know?”
I know that you know that those of us in the know will know what you mean. However, I also know that lizkat is not in the know and therefore will not know what you mean.
So, for her sake, I will translate:
=================================
Lizkat,
You think you know, but the sad fact is that you don’t know, and the really big problem for you is that you don’t know that you don’t know.
Hmmm….I don’t know that I have made this any clearer.
It was a good try, anyway.
“The question of the safety and effectiveness is important, because the HAART drugs destroy health.”
“And the drugs are given to people who are too poor and uneducated to make their own decision.”
“They trust the doctors.”
Do you have evidence for these claims?
BillyJoe “You think you know, but the sad fact is that you don’t know, and the really big problem for you is that you don’t know that you don’t know.”
Well, at least it didn’t make me dizzy.
Lizkat said,
“Antibiotics are not taken for life, Harriet, so it is a different problem. As long as they are not over-prescribed they won’t destroy people’s health. And they are probably not quite as deadly as AR drugs.”
You are evading my point. You have criticized the literature on HAART based on lack of placebo-controlled studies and the possibility that the disease was becoming less virulent and the drugs were really not effective. I tried to show that the literature on antibiotics could be criticized in exactly the same way. Your criticisms of the HAART studies did not depend on the length of time taken or the prevalence of side effects. If you exempt antibiotics from the same arguments you use for HAART, you are obviously biased.
The evidence does not show that HAART drugs are “deadly.” It shows that they prolong life and improve quality of life overall, although they do have adverse side effects.
Lizkat said, “We do not know which cases of HIV infection are likely to progress to AIDS. That information is needed. At least some kind of estimate.”
Of course we don’t know “which” cases. We don’t know which cases of pneumonia would resolve without antibiotics, either. What we do know (for both AIDS and pneumonia) is what percentage of cases will progress, and over what time period. We know this based on early studies where patients were not treated.
In the absence of a crystal ball, our only option is to treat every case. We will necessarily be treating some patients who would have done well without treatment. We should keep looking for a way to identify those patients, but meanwhile we have to do the best we can for all patients.
Lizkat said,
“Antibiotics are not taken for life, Harriet, so it is a different problem”
Harriet said,
“You are evading my point.”
In fact, lizkat has not understood your point.
It is annoying when someone, out of ignorance, feels themselves far superior to everyone else.
At the moment, Lizkat is still sort of cutely ignorant, and maybe she still has a chance, but how long before she starts to resemble that idiot Dullman?
Please, Lizkat, consider that you may be wrong.
(I know you can throw that back at us, but….oh well…we can only try)
HH — If you exempt antibiotics from the same arguments you use for HAART, you are obviously biased.
I didn’t exempt antibiotics. But some bacterial infections are fairly well understood, compared to AIDS, which is not at all well understood. And we do have good reasons to think there are times when antibiotics are useful. I am very much against long-term use of antibiotics, as in chronic Lyme disease, for example. But getting into a long dissertation on antibiotics would just distract from the whole point. Which is, I guess, what you would like.
One of the main problems, as I said, with HAART is that it is taken long-term, probably for life. That is not the case with antibiotics, or it should not be the case.
——
HH — The evidence does not show that HAART drugs are “deadly.” It shows that they prolong life and improve quality of life overall, although they do have adverse side effects.
Those “adverse” side effects, also known as “grade 4 events” are very often deadly. You are not well-informed on this subject.
And now that I thought we all agreed there is not good quality evidence, you insist that there is. Yet you can’t even show me a single study, not even a single case history, that would strongly support your claims.
Please read this abstract:
Grade 4 events are as important as AIDS events in the era of HAART.
http://www.ncbi.nlm.nih.gov/pubmed/14615655
lizkat,
The abstract doesn’t say any of the grade 4 events were due to HAART. Perhaps it means that HAARTs are keeping patients alive and healthy so that the risk of AIDS events is less than the risk of the common diseases that affect everyone, like heart attacks.
lizkat,
This discussion candidly addresses the risks of AIDS drugs and the many unanswered questions about them, but it also unequivocally points out their benefits: http://stanford.wellsphere.com/hiv-aids-article/making-the-decision-to-start-hiv-therapy/79922
“To give you my personal perspective, looking at my own clinic, from ’96 up till now, I think out of a patient population of about 70-80 patients, I haven’t lost a single patient whereas before… at the end of the year, 50% of them would be gone.”
“The potent drugs became available late in 1996 and the hospital wards just emptied out and have stayed emptied out. And it’s now an outpatient chronic disease.”
These are typical comments of doctors who have treated these patients before and after the availability of effective drugs. No, they are not the kind of perfect placebo-controlled studies you apparently would like to see, the kind of studies that can’t ethically be done. But when added to all the imperfect published studies we do have, they constitute compelling evidence to anyone who can look at them without the blinders of reflexive doubt.
http://www.springerlink.com/content/b31m78w7t171q984/
Cardiovascular effects of HAART in infants and children of HIV-infected mothers
studies of adults receiving HAART have found increased peripheral and coronary artery disease. Children exposed to this therapy in utero are thus at an increased risk for toxicity and cardiac abnormalities, regardless of their HIV status. Preliminary studies have reported complications including lactic acidosis and mitochondrial toxicity, as well as cardiomyopathy. Further studies are needed to explore the long-term effects and possible toxicities of prophylactic antiretroviral therapy on infants born to HIV-infected mothers.
lizkat,
Your quoted piece is preceded by this:
“Over the past decade, the course of human immunodeficiency virus (HIV) infection has been markedly altered by highly active antiretroviral therapy (HAART). As advances in early diagnosis and aggressive therapy, as well as better supportive care, become available to more HIV-infected patients, survival is being prolonged and more patients are experiencing cardiac abnormalities.”
In other words, in the opinion of the authors of this study, patients would be dead without HAART (and better supportive care) but, now that they are living longer, they may be experiencing long term complications of the treatment that kept them alive.
“Children exposed to this therapy in utero are thus at an increased risk for toxicity and cardiac abnormalities”
But here is a list of complications of HIV infection in children:
http://www.pediatriconcall.com/FORDOCTOR/diseasesandcondition/infectious_diseases/hiv_infection.asp
Cardiac complications of paediatric HIV infection
“They can develop myocarditis, pericarditis, pericardial effusion or endocarditis usually seen in IV drug abusers. They can develop various types of rhythm disturbances, which can be detected on Holter monitoring. One can see infections like CMV, bacterial infection or tuberculosis affecting the heart. Rarely they can develop neoplasms like Kaposi’s sarcoma or lymphoma involving heart.”
Of course not all of these children develop HIV infection but that might be because their mothers were treated with HAART.
BillyJoe, the preceding paragraph means nothing to lizcat because she doesn’t believe we have adequate science to establish any benefit for HAART.
She does believe, however, that we have adequate science to establish harms. The fact that the same scientists are discovering both things means nothing to her. And she doesn’t apply the same criticisms to the science finding harms: she doesn’t say, well we don’t know that HAART caused these things. Maybe they would all have suffered these symptoms anyway. Maybe everyone who doesn’t have cardiac problems has died of AIDS, so the remaining population base is showing cardiac problems but it has nothing to do with HAART.
lizcat,
My guess for the reason nobody has pointed you to The Smoking Gun that establishes efficacy of HAART against AIDS is that there isn’t one. It’s the accumulation of many, many pieces of evidence that all point in the same direction.
You are making identical arguments to the tobacco companies when they were trying to claim that smoking doesn’t cause lung disease. They would say we don’t know that: maybe people who choose to smoke are just different from people who don’t, and they would have developed lung cancer anyway.
Over the years, scientists accumulated irrefutable evidence that smoking does indeed cause lung disease. There is not a single Smoking Gun prospective RCT with human subjects, some of whom are required to start smoking and some of whom are prevented from doing so. Not one. Yet we are able to establish quite convincingly that smoking does indeed cause lung disease.
In terms of your specific question of how it could be possible to project increased years of lifespan beyond the number of years HAART has been in use, I don’t know how the researchers did it but it’s extremely easy to imagine a method.
Let’s say that half of a population with disease A is dead within a year. And of the remaining, half are dead within the following year. And so on.
The median lifespan with Disease A is 12 months.
Half the population with Disease B are dead within 12 years. Half the remaining die within the following 12 years. At this rate, 6% would be dead after 1 year; 21% dead after four years; 37% at 8 years and 50% at 12 years.
Based on the data available to you at just 4 years, you could project that the median lifespan with Disease B is 12 years.
And you could say, with X amount of confidence, that people with Disease B have a median lifespan 8 to 15 years longer than people with Disease A. Even though the actual dry facts we have are just that at 4 years, 94% of people with Disease A and 21% of people with Disease B are dead.
You’re right, we don’t know that for sure. But it would be a good guess and consistent with the information we have.
My point is that your questions have answers. If you want to know them, start studying infectious disease research methodology, or something.
Alison,
“BillyJoe, the preceding paragraph means nothing to lizcat because she doesn’t believe we have adequate science to establish any benefit for HAART.”
Well, it was her link supposedly supporting her view. I just thought I’d point out that she had to cheery pick her quotes in order to make it do that.
(Good explanation by analogy BTW).
– Over the past decade, the course of human immunodeficiency virus (HIV) infection has been markedly altered by highly active antiretroviral therapy (HAART). As advances in early diagnosis and aggressive therapy, as well as better supportive care, become available to more HIV-infected patients, survival is being prolonged and more patients are experiencing cardiac abnormalities.
Every article on AIDS, HIV and HAART is preceded by a statement like that. It seems that they have to say it. It is the conventional “wisdom” which mainstream researchers are not allowed to question. To have a career in AIDS research you have to say that, and you cannot question whether the seriously damaging effects of HAART could outweigh their benefits.
Yet when you read some of these reports it is obvious that the researchers are secretly questioning HAART. If infants of mothers treated with HAART are getting these serious health problems, we know it is NOT because they are living longer healthier lives thanks to HAART!
– If you want to know them, start studying infectious disease research methodology, or something.
Oh yes, non-experts should not be allowed to question the experts.
And you know very well that my arguments have no resemblance to the idiocy that came from the tobacco companies. When everything except smoking is controlled for, then cancer is much higher for smokers. End of argument.
Your method for estimating improved survival makes no sense. Because of lead-time bias, for example, HIV patients treated earlier will be more likely to survive 5 years than those treated later or not at all. You can not extrapolate from 5 year survival, but they are doing that.
My guess is that researchers funded by drug companies are encouraged to write positive reports. It isn’t hard to do because most people never think about things like lead-time bias.
And, as I said, all reports, whatever their funding source, start out by saying HAART is wonderful. You apparently have to say that to get published. Then you can go on to describe the truth about HAART.
I have read many articles and abstracts about the horrors of HAART and I can post more links if anyone has any curiosity or skepticism.
I really don’t understand why scientific skeptics feel they have to be cheerleaders for the drug companies. Some of the drug companies have already proven themselves to be sleazy and unscientific. Why not focus your skepticism on them once in a while.
Aricept and HRT, for example, have been criticized at this blog, and I was very glad to see it. There seems to be something sacred about HAART.
“And you know very well that my arguments have no resemblance to the idiocy that came from the tobacco companies. When everything except smoking is controlled for, then cancer is much higher for smokers. End of argument.”
No, it wasn’t the end of the argument at all. Eventually, once they stopped denying that smokers didn’t have more lung cancer than non-smokers, tobacco companies really did say that science hadn’t excluded the possibility that there was something different about smokers that made them susceptible to lung cancer. Exactly the way that you are insisting that science hasn’t excluded the possibility that there is something special about people who receive HAART that means they weren’t going to develop AIDS anyway.
The accumulated evidence was along the lines of (quoting http://www.sciencebasedmedicine.org/?p=2741) “the hypothesis that smoking causes cancer as the causal relationship to explain the correlation raises several predictions, all later confirmed. The duration of smoking increases risk of cancer (a dose response relationship), stopping smoking reduces the risk of cancer, greater intensity of smoking increases risk, and smoking unfiltered vs filtered cigarettes is associated with higher risk. These various correlations only make sense if smoking causes lung cancer. Further, tobacco smoke contains substances demonstrated to be carcinogens – so there is biological plausibility.”
First you state that there is no correlation between HAART and improved survival, saying without evidence that no AIDS researcher has ever controlled for lead-time bias. That’s exactly like the tobacco companies denying an association between smoking and lung cancer.
You also state that science hasn’t proven that the reason HIV+ people using HAART don’t develop AIDS at the rate that HIV+ people who don’t use HAART do is neither that there is something special about the people who are taking HAART nor that there is something special about the strain of HIV that coincidentally infects only people who take HAART.
That’s exactly like the tobacco companies saying that the reason smokers develop cancer at a higher rate than non-smokers is that there’s something special about smokers and they were going to develop cancer anyway.
Science established beyond a reasonable doubt that smoking causes cancer through multiple lines of evidence all pointing in the same direction.
Similarly, science has established beyond a reasonable doubt that HAART prolongs life in HIV+ people through multiple lines of evidence all pointing in the same direction.
The point of Amy Tuteur’s post is unreasonable doubt.
“There seems to be something sacred about HAART.”
Perhaps to you. Speaking for myself, there is nothing sacred about HAART. Every treatment has side effects. HAART is no exception and its side effects are as well known to us as its benefits. We are always waiting for something better to come along. I am a clinician and not a researcher but I bet that they are not studying HAART but rather newer drugs and combinations and comparing them to HAART, at least they should be.
You know what Alison, you don’t make any sense and you don’t know what I said and I don’t think there is any possibility of explaining to you what I said or meant. I don’t believe you are a skeptic, because skeptics are usually somewhat logical.
—- I bet that they are not studying HAART but rather newer drugs and combinations and comparing them to HAART, at least they should be.
Of course they are weing. They are developing new toxic drugs that may be a bit less toxic than the older drugs. And they will be able to demonstrate that patients live longer on the less toxic drugs.
lizkat,
“Oh yes, non-experts should not be allowed to question the experts. ”
That’s not what we’re saying here. Youi certainly can question the experts. But, to question the experts, you need have at least their level of knowledge in the very specific area where you challenge them. You have not demonstrated that level of knowledge.
“I have read many articles and abstracts about the horrors of HAART and I can post more links if anyone has any curiosity or skepticism.”
The question is not what are the risks, the question is what are the risks v benefits? I can give you a horror story about an appendicectomy that went wrong, but to decide whether that person should have had the appendicectomy, you need to consider the risks of not having done so – peritonitis and death.
“I really don’t understand why scientific skeptics feel they have to be cheerleaders for the drug companies.”
Now you’re just being disingenuous. You’d be lucky to find a single poster here who could reasonably be called a “cheerleader for the drug companies”. I have not found a single myself.
“Aricept and HRT, for example, have been criticized at this blog..”
Presumably by cheerleaders for the drug companies! You really should make up your mind. Are we cheerleaders for the drug companies or are we not?
“Your method for estimating improved survival makes no sense. Because of lead-time bias”
In my experience, they take this into account. Is your experience otherwise?
“If infants of mothers treated with HAART are getting these serious health problems, we know it is NOT because they are living longer healthier lives thanks to HAART!”
Again it’s risk v benefits. These infants may actually be alive because their mothers are being treated or, if they already have HIV themselves, because they are being treated.
BJ
lizkat,
“They are developing new toxic drugs that may be a bit less toxic than the older drugs. And they will be able to demonstrate that patients live longer on the less toxic drugs.”
What? There’s something wrong with that??
Oh wait…you were being sarcastic.
(In case you consider this cheerleading, I will tell you that although the drug companies have produced some undeniably very useful drugs, they have also produced some that are next to useless or worse. And their marketing arm uniformly stinks.)
They are and have been developing components of HAART with different side effect profiles, that are metabolized differently in order to lower toxicity. What would you compare their efficacy to? Non-treatment?
They are and have been developing different components of HAART that may be metabolized differently and have different side effect profiles in order to lower toxicity of the HAART regimen and be able to tailor it better to the needs of the individual patient. What would you have them compare the efficacy to? Non-treatment?
– They are developing new toxic drugs that may be a bit less toxic than the older drugs. And they will be able to demonstrate that patients live longer on the less toxic drugs.
– What? There’s something wrong with that??
Oh wait…you were being sarcastic.
No I wasn’t being sarcastic. Part of the improvement in longevity with HAART over AZT, for example, is because AZT is extremely toxic. So some of the HIV or AIDS patients on AZT were dying from the drug, not from AIDS. I am not saying AZT never saved any lives or that HAART never saves any lives. That is something I do not know. But from what I have learned about this so far, I am pretty sure that some percentage of patients are killed by the treatments, instead of the disease.
“Your method for estimating improved survival makes no sense. Because of lead-time bias, for example, HIV patients treated earlier will be more likely to survive 5 years than those treated later or not at all. ”
Well, duh!
Is not the present recommendation to reserve treatment until the CD4 count falls below a certain level before using HAART? That not only restricts study populations to patients with more uniform prognoses, but it confines unwanted side effects to those more likley to benefit from treatment.
AND–
“But from what I have learned about this so far, I am pretty sure that some percentage of patients are killed by the treatments, instead of the disease.”
Why is this such a novel idea for you? It sounds bad as you have expressed it, but few effective medical treatments lack risk, even rarer fatal ones.
Obviously, the level of acceptable risk depends upon the seriousness of the condition being treated and we are not talking about ingrown toenails here. We are taking about a lethal condition that will always be difficult to treat because you cannot easily kill off a virus within the human body. You can only influence the way it interfaces with the host person’s normal biological processes. That is not easy without unwanted effects.
– Why is this such a novel idea for you?
It is not a novel idea for me, or for many others. It is very well known. However, Dr. Tuteur and many of the commenters on this post like to make excuses for the drugs. For example, the non-AIDS deaths of HIV patients are the result of HIV patients living longer, thanks to HAART. Even though the drugs are known to cause cancer and heart disease, metabolic syndrome and diabetes, liver and kidney disease, etc. They cannot accept the thought that the substances are highly toxic to every cell of the body.
The drugs can directly cause death from various diseases. They also must weaken the immune system, even while they are supposedly restoring it. I do not know if they actually have a restorative effect. I am only saying that they probably damage the immune system to some degree, whether or not they also restore it to some degree.
None of what I am saying is novel. I am saying it because so many fail to see it, or see it but try to explain it away.
If you think about any medical treatments that have been proven to actually restore health, there probably are not many that subject the body to life-long toxicity.
I do not know why the AIDS death rate declined since HAART. I am only suggesting that there are possible alternative explanations that should at least be considered.
lizkat said: “from what I have learned about this so far, I am pretty sure that some percentage of patients are killed by the treatments, instead of the disease.”
pmoran responded: “Why is this such a novel idea for you?”
lizcat responded: “It is not a novel idea for me, or for many others. It is very well known. ”
Are you are *pretty sure from what you’ve learned so far* that some patients are killed by the treatment, or is it *well known* that some patients are killed by the treatment?
lizkat,
“Dr. Tuteur and many of the commenters on this post like to make excuses for the drugs. For example, the non-AIDS deaths of HIV patients are the result of HIV patients living longer, thanks to HAART. ”
That is not an excuse.
It is the justification for using HAART.
It is possible that some patients die sooner on HAART than they would have if they had remained untreated (in fact, that is probably inevitable). But the evidence is that a much larger number live longer. Some of those who live longer will eventually die of side effects of HAART (that is probably also inevitable) but all of them will obviously have done better on HAART. And the overall conclusion – combining all these groups – is that in general patients do much better on HAART.
“They [Dr. Tuteur and many of the commenters on this post] cannot accept the thought that the substances are highly toxic to every cell of the body.”
Your qualifier is open to interpretation (what exactly do you mean by “highly”) but, in any case your characterisation that they *cannot accept the thought* is not justifiable.
– For example, the non-AIDS deaths of HIV patients are the result of HIV patients living longer, thanks to HAART. ”
That is not an excuse.
– It is the justification for using HAART.
It is an assumption, not a justification. You managed to turn my statement around.
– Are you are *pretty sure from what you’ve learned so far* that some patients are killed by the treatment, or is it *well known* that some patients are killed by the treatment?
Are you inviting me to join you in a quibble fest over exact wording.? Thank you very much, but no.
– the overall conclusion – combining all these groups – is that in general patients do much better on HAART.
They do better on HAART than on what? AZT? Yes, we know that.
No, it’s just that your first statement implied that this was a novel idea for you, but when it was pointed out to you that this is not a novel idea but common knowledge, you then agreed that it is of course common knowledge. Maybe you used incorrect wording, but am I supposed to apologise for that?
Yes, Lizkat, by “novel idea” I was referring to the fact that you seem to be stunned that a treatment considered useful by the medical prfession in an extremely serious illness could have serious side effects. What dream world are you living in?
You go on to talk about the potential for other long term side effects as though there were no possible benefits that could justy those risks.
You may not be a CAM supporter but you seem to share with some of them the notion that, as the central point of a benevolent universe, you have an absolute entitlement to 100% effective and safe treatments for anything that ails you, right here and right now. Any shortfall in those expectations has to reflect medical ignorance or corruption.
Try and get over this while you continue to study the evidence.
Oh no pmoran, I am very far from being someone who expects nothing but miracles from modern medicine. And I am very far from being a CAM looney. I know there is no cure for AIDS, and I think it’s very possible there never will be, or it will be so far off none of use will see it. Or whatever. I am very far from demanding or expecting a good AIDS treatment. That kind of unrealistic expectation is one reason AZT was rushed though approval without adequate testing.
I think HAART is a barbaric treatment. That is my opinion at this time. I think some day everyone will agree, but of course right now it’s all speculation and opinion.
I don’t think anyone knows, at this time, if HAART does more harm or good. Serious HAART-related disease occurs in infants born to mothers who took HAART. You can say HAART prevented the infants being born with HIV and later getting AIDS. But you simply do not know, and you don’t have evidence for your belief.
I am not stating anything with certainty and I am not claiming to have the answers, and I do not necessarily expect answers any time soon. I am simply pointing out some horrific truths that only a truly skeptical person is likely to see.
Oh no pmoran, I am very far from being someone who expects nothing but miracles from modern medicine. And I am very far from being a CAM looney. I know there is no cure for AIDS, and I think it’s very possible there never will be, or it will be so far off none of use will see it. Or whatever. I am very far from demanding or expecting a good AIDS treatment. That kind of unrealistic expectation is one reason AZT was rushed though approval without adequate testing.
I think HAART is a barbaric treatment. That is my opinion at this time. I think some day everyone will agree, but of course right now it’s all speculation and opinion.
I don’t think anyone knows, at this time, if HAART does more harm or good. Serious HAART-related disease occurs in infants born to mothers who took HAART. You can say HAART prevented the infants being born with HIV and later getting AIDS. But you simply do not know, and you don’t have evidence for your belief.
I am not stating anything with certainty and I am not claiming to have the answers, and I do not necessarily expect answers any time soon. I am simply pointing out some horrific truths that only a truly skeptical person is likely to see.
pmoran – “You go on to talk about the potential for other long term side effects as though there were no possible benefits that could justy those risks.
You may not be a CAM supporter but you seem to share with some of them the notion that, as the central point of a benevolent universe, you have an absolute entitlement to 100% effective and safe treatments for anything that ails you, right here and right now. Any shortfall in those expectations has to reflect medical ignorance or corruption.”
Well said. One of the big CAM supporter rallying cries is that CAM treatments don’t have side effects (which the truly inert ones that do nothing don’t obviously, since they do nothing and have no effect at all). However, herbs and other CAM treatments that have an effect also have side effects like all medicines. After all, a “side effect” is just an effect other than the desired effect (and it can be beneficial or not, some drugs actually get re-purposed because a “side effect” is a desired effect for another condition).
And, yes, it’s a sign of magical thinking and a misunderstanding of the real world to demand 100% certainty since it’s not dealing with how the real world works. It’s religion that demands and proposes absolute certainty (and terminology like “true skeptic” is awfully close to “true believer”!). Science recognizes not only our inherent biases and tries to mitigate them through use of the scientific method but it also recognizes that 100% certainty doesn’t exist and there is much that is unknown. Medicine, particularly clinical medicine, is about reducing real world suffering in real people as much as possible now using the best knowledge we have available at this time. When we know better, we do better.
lizkat,
You are anything but a “truly skeptical person.”In fact, you remind me very much of a commenter here who said similarly uninformed pseudoskeptical nonsenses, namely pec. Remember pec? Your comments are bringing back memories of pec.
I wonder…
Although your IP address is not the same as pec’s, it does resolve to someplace a mere 30 miles from where pec’s did.
“I think HAART is a barbaric treatment. That is my opinion at this time. I think some day everyone will agree, but of course right now it’s all speculation and opinion.”
Where is your evidence for this? It is only your uninformed opinion and I am sure the uninformed would agree with you.
Do you consider penicillin a toxic, barbaric treatment because some people go into anaphylactic shock and die from it? The fact that you don’t know that HAART is helpful does not mean that others don’t know either. When AZT came out it was better than what we had up to then. We’ve come a long way since those days. We will go further still. To deny that, for those that have access to it, HAART has turned AIDS into a chronic disease, is to deny reality. Pointing out that HAART has side effects is pointing out what we already know. What is so skeptical about that?
I don’t know what pec is or what that has to do with my ip address. No one has answered any of my objections to HAART and it’s obvious that after this many comments the discussion is not going anywhere. No one can say WHY they believe HAART does more good than harm, it’s just the conventional “wisdom.” I might as well go to the fundamentalist Christian church and argue about whether Jesus actually rose from dead. Which I am not gonna do, and I am done with this conversation — and I mean it this time!
@lizkat on 07 Feb 2010 at 10:27 am wrote “… AZT was rushed though approval without adequate testing.”
That is a common fabrication (lie) from AIDS denialists. AZT was subjected to a standard clinical protocol and the results were so dramatic that the test was stopped. MARTIN S. HIRSCH* AND JOAN C. KAPLAN ANTIMICROBIAL AGENTS AND CHEMOTHERAPY, June 1987, p. 839-843.
In short, AZT was so effective that a person observing the clinical trial could tell who was getting the drug, without knowing the verum/placebo distribution. So, yeah, the study was not completed; but it was because it was not ethical to do so.
“@lizkat on 07 Feb 2010 at 10:27 am wrote “… AZT was rushed though approval without adequate testing.”
Joe – That is a common fabrication (lie) from AIDS denialists.”
And this is exactly why it’s hard to take lizkat seriously as a skeptic and she simply appears to be an AIDS denialist masquerading as a skeptic! She’s so extremely skeptical about medicine, even in the face of evidence, but shows absolutely no skepticism about lies perpetuated by AIDS denialists and faithfully repeats them as though they are facts.
You do realize, of course, that this comment makes me think more than ever that you are in fact a sockpuppet for pec.
“No one can say WHY they believe HAART does more good than harm, it’s just the conventional “wisdom.” ”
Bullocks. Years of experience have taught us that. Using parachutes when you jump out of planes is also just conventional “wisdom.”
Dr Gorski – Actually she’s more sophisticated than pec, who really wasn’t very bright. lizkat justs uses the same sources and talking points as pec and any other cliché denialist/pseudoskeptic, it’s why she sounds like a sock puppet.
Apparently I remind you of someone else who didn’t jump on the HAART bandwagon, and I guess they were one of the crazed HIV deniers. And apparently everything is either this or that in your minds. I have very little in common with the HIV deniers — I have found that most of them are more interested in proving themselves right than in being skeptical. They have zero tolerance for my questions. So I thought I might find some open-mindedness and curiosity at this blog, after I saw the post about Aricept.
My motivation in commenting about HAART has been curiosity and concern. I have no political agenda whatsoever.