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187 thoughts on “Just the Facts

  1. BillyJoe says:

    Who’s michelleinmichigan?

  2. micheleinmichigan says:

    She is my evil twin. It’s amazing how much mail I get addressed to her. On the other hand considering that the pronunciation of my full (undisclosed) name is regularly slaughtered, I do not mind an occasional spelling confusion.

  3. micheleinmichigan says:

    # Tsuken – I think the distinction between a delusion and a over-valued idea is great.

    My experience is that one can seldom make much headway arguing against a delusion. With an over-valued idea, we can sometime be convincing if we reframe the idea, such as Dash does when putting the anti-vax idea into a conspiracy theory framework.

    We can also put the over-valued idea into a greater context. For someone who is afraid to fly we might acknowledge the risk, but put them into the context of driving or other daily activities. We might also encourage discussion on the negative consequences of not flying (more time driving, loss of income, increased stress, etc) which may encourage the person to seek to overcome their fear.

  4. micheleinmichigan says:

    Dash – “When I say we need to educate parents on where anti-vaxxers are coming from, I mean opening it up. Most things I’ve seen over the years from pro-vax people are facts and ridicule. For a parent who’s looking for information ridicule is often a bad tactic. They don’t have the expertise to understand why it is justified and it just sounds mean.”

    Yes, I agree. I think sometime people forget that all sorts of people happen upon these science/medicine blogs. The often do not have any context for the vigor of this debate. For me it’s like walking into the middle of a couple bickering. Regardless of who is right or wrong. my natural tendency is to side with the person that seems to be the one being picked on and dislike the person who is attacking.

    Also, I’m always looking for science projects. I’d like to check out your blog if you’re interested in posting a link.

  5. micheleinmichigan says:

    Dash – “I’m well known as an extended breastfeeding, cloth nappying, co-sleeping Mumma who is passionate about science and vaccination.”

    BillyJoe – I hope it’s not a straightjacket they’ve placed you in – worse still, one you’ve placed yourself in. ;)

    BillyJoe – didn’t they tell you the straightjacket comes with the child? You need if for when the beloved child asks you “why are bananas called bananas” for the 2000ed time within the one minute that you have to talk to computer tech support for whom you have been waiting on-hold one hour.*

    Compared to that, I’m assuming extended breast feeding, cloth diapers and co-sleeping are nada.

    *gripping about parenting is one of my hobbies, just to undermine the “it’s ALL joy and bliss” myth.

  6. kleenhed says:

    I have been a casual observer on this site for a few months now. I first came here after reading Amy Wallace’s article on vaccines in Wired magazine. I am a parent of a toddler, and I had to go through the whole “should we or shouldn’t we vaccinate” debate myself before my son was born (sorry to tell you this, but it has become almost a rite of passage for today’s parents). I decided to move forward with vaccinations, although at the time, I didn’t have a lot of good reasons. It just felt like the best choice for my family. Eventually, I stumbled across enough information that made me realize that the anti-vaccination movement is misguided at best, and that the risks of not vaccinating my son are far greater for him and for my community than the limited risks of vaccinating him.

    I am writing in the hopes of providing a little insight into the mind of a layperson. So often on this site, your articles and the comments that follow devolve into a rhetoric that is wholly pompous, detached, aggressive, and self-aggrandizing. You think that you and yours have all the answers because “science told you so” and that anyone who thinks differently is an idiot. Many of you seem to me to live in a world of black and white, “us vs. them”. You think that those you criticize do not believe in science, and that anyone who questions the status quo is a quack and a moron.

    Let me first just tell you, there is a LOT of information out there. Most of it is shit, and even worse, most of it is designed to scare the shit out of you. But as a pregnant woman, I felt it was my responsibility to my child to weed through some of it so I could give him the very best start in life. And what I found is that there is a lot to be afraid of: BPA in baby bottles, phthalates in crib mattresses, thimerosal and aluminum in vaccines, toxic chemicals in the home, perchlorate in our water… the list went on and on and on and on. I am not a scientist. I am not a doctor. I had to try hard to find the right information without killing myself with overload (or fear!) in the process. But the right information is not readily available. Somehow I managed to get through it OK. I got BPA-free bottles for my baby, I got a phthalate-free mattress, I found out that thimerosal is no longer found in most vaccines and I spread out his shots by one week to minimize the amount of aluminum he receives in one visit, I try to use only eco-friendly cleaning products in my home, I use filtered water to drink, etc. But it was a huge battle getting even to this point.

    I was overwhelmed with information, and not all of it was good. But where is a parent supposed to turn? Pediatricians aren’t necessarily doing a bang-up job of delivering the goods. In my experience, I got a lukewarm reaction when I started asking questions about vaccines. I don’t even recall what the answers were at the moment, but there was certainly no passion in the delivery, and definitely not a lot of information. Amongst my circle of friends (and there are about 30 of us that have reproduced over the last 2 years), none have received a good, strong opinion on the topic. There are lots of voices out there and, right or wrong, in many cases the voices with the worst information are also the loudest. Not everyone has the patience or the resources to keep digging until they reach the real information (or like me, decide to err on the side of caution/science until they are sure). You can’t always fault people for being drawn to the loudest voices. YOUR voices need to be the loudest voices out there. Why aren’t they? (But PLEASE, it will never work if you don’t tone down the condescending attitude!).

    And if you really think about it, can you blame people for being unsure of scientific evidence? Do you remember when eggs were going to kill us all, but now eggs are OK? What about butter being the root of all evil, but wait, now science tells us that margarine is even more evil than butter? Oh, and now lard is better than Crisco? How about hormone replacement therapy – remember when that was supposed to keep women from getting cancer or heart disease? Oh, OOPS! But science told us that hormone replacement would prevent these things! And science is never wrong! BULLSHIT. Stop being so damned pompous. You may have the best method for coming to a conclusion, but you don’t have all the answers. Stop pretending that you do and stop criticizing people for not having access to good information. Your bad attitude is only serving to widen the divide.

    Sorry, this came off much more negatively than I intended. If I ever post again, I will try to be nicer. My comments aren’t directed to anyone here, as I have not had time to read through any of the comments, but after reading the article my feathers were a little ruffled. Again, I apologize for venting. Carry on.

  7. micheleinmichigan says:

    kleenhed – (at the risk of sounding overzealous) – Amen! In general I think the SBM commentors are more even keel than on some science blogs, but sometimes they (we?) do go over the top.

    It’s always good to be knocked down a peg or two (or three, etc.)*

    *this has been a presentation of mixed metaphors inc.

  8. weing says:

    “You think that you and yours have all the answers because “science told you so” and that anyone who thinks differently is an idiot.”

    We have the answers that science gives us. Anything else is guesses or pot luck. We do not have all the answers. Even the things you say about HRT is an oversimplification and the story there is not settled yet either. Our knowledge is evolving and so will our practice. Are you sure you aren’t looking for some unchanging truths? If so, this is not the place.

  9. micheleinmichigan says:

    kleenhed -“You think that you and yours have all the answers because “science told you so” and that anyone who thinks differently is an idiot.”

    weing “Are you sure you aren’t looking for some unchanging truths? If so, this is not the place.”

    I would read it as she’s looking for some respect (or as Aretha would say, r-e-s-p-e-c-t) and the acknowledgment that not trusting the scientists or doctors 100% of the time doesn’t make someone an idiot.

    IMO that is.

  10. micheleinmichigan says:

    BillyJoe

    “Who’s michelleinmichigan?”

    micheleinmichigan

    “She is my evil twin.”

    —–

    After thinking about it, I have to admit, she is probably my good twin.

  11. weing says:

    “I would read it as she’s looking for some respect (or as Aretha would say, r-e-s-p-e-c-t) and the acknowledgment that not trusting the scientists or doctors 100% of the time doesn’t make someone an idiot.”

    I’m sorry, my bad. I thought she was looking for information.

  12. kleenhed says:

    weing: “We have the answers that science gives us. Anything else is guesses or pot luck. We do not have all the answers. Even the things you say about HRT is an oversimplification and the story there is not settled yet either. Our knowledge is evolving and so will our practice.”

    My point is that if your knowledge is evolving, and facts are changing all the time, then (a) how can anyone feel that they have all the facts (including you guys, but especially us common folk – we don’t even know how to weed THROUGH all the facts! poor us, ha!) and (b) how do you know your answers are right even though you know the answer might be different when more facts come to light years down the road?

    To be clear, my comments are not specific to vaccines, anti-vaxers, etc. I am also following some comments re: CAM as well.

    Might as well put it all on the table while I’m here. I have alopecia totalis. Medical science tells me that if the few sanctioned treatments don’t work for me (they didn’t) then there’s no hope. So what is left for someone like me? Where do I turn? I have been living with this for 9 years, and have learned to just accept that I am a bald woman with no hair, eyebrows or eyelashes. And after 9 years, I just might decide that acupuncture could offer me something. Or maybe herbs or vitamins might offer me something. They might not, but I am almost 40 and I feel like I have to try something! Those “alternative” options that most of you seem so quick to dismiss as “folk magic” are the only options someone like me has left.

    I am not looking for approval from any of you good folks… I merely mention it to remind you that there are individual, human stories out there and it is unfair and closed minded to be categorically dismissive of those who seek alternative therapies when left with no other options. Make fun all you want, but some folks have no choice.

    You all seem quite smart and I know you know what I am telling you – just know that you have a wider audience here than you may realize.

    And I apologize for the tone in my last post.

    But at the end of the day, maybe weing is right. Maybe this site isn’t for me after all…

  13. Watcher says:

    Your bad attitude is only serving to widen the divide.

    Wait … what? You talk about not discussing things in a condescending manner then come at people like that?

    And if you really think about it, can you blame people for being unsure of scientific evidence?

    I’m not sure where you got the idea that “science” has all the answers, because a scientist should never give anyone that impression unless a mountain of evidence is available (see Evolution). Because there are things that are hard facts. I can give you one thing though, those in science will (usually) admit being wrong about something and change their information to suit new evidence. No other line of thinking does this. Our knowledge base is ever expanding and our understanding of our surroundings is bound to change as new evidence comes in. Would you rather we just kept the status quo?

    I would read it as she’s looking for some respect (or as Aretha would say, r-e-s-p-e-c-t) and the acknowledgment that not trusting the scientists or doctors 100% of the time doesn’t make someone an idiot.

    And I do. Not many people out there will take the time the read things in the manner that kleenhed did. It’s great that she employed critical thinking, logic and reason (as well as trust) in many of these things. And there is such a thing as “bad science” out there performed by the likes of “Dr.” Buttar, etc. Being skeptical about everything, even studies in science, nature, etc. is a part of being a good critically minded individual. However, saying that “science has been wrong before” is not a reason to cast it’s practice to the wind. Because as she said in her post, it’s the best problem solving skill in our possession. Nothing else has the explanatory power that comes from applying a scientific mindset to a problem.

  14. apteryx says:

    weing: “I’m sorry, my bad. I thought she was looking for information.”

    Where did you get that idea? She said she was writing to “provide insight,” in part, into her own feelings about already being over-inundated with less than fully trustworthy information. This comment makes it sound like you think a layperson’s mode of interaction with you ought to be a one-way flow of information, where we sit at your feet and listen respectfully while you tell us not to worry about those studies showing HRT causes cancer.

  15. Harriet Hall says:

    “it is unfair and closed minded to be categorically dismissive of those who seek alternative therapies when left with no other options.”

    If I ever wrote anything that could be considered to mean I was categorically dismissive of those people, I apologize for the misunderstanding. But I don’t think any of us fits that description. I think you are reading something into this blog that was never there.

  16. kleenhed says:

    As I mentioned, I am following other articles on this site. I have come & gone a few times over several months.

    If given the time, I will go back through and reference some of the comments that led me to make my own comment moments ago, just for reference. I wasn’t specifically referring to any of the comments related to this particular article. I am sorry for the confusion – it was probably a bad idea to refer to months’ worth of observations in this one string of comments. It’s bad form.

    I will either return with more information to continue the discourse or move my comments to where they make more sense.

    Thanks to all who have replied.

  17. Watcher says:

    But at the end of the day, maybe weing is right. Maybe this site isn’t for me after all…

    I disagree. As i said in my last post, you have all the makings of a good critically-minded individual. You are skeptical, but I think at this point you’ve misunderstood what science is about, replacing it with something that comes from media hype. Society assumes, and the media purveys, that since an experiment shows a correlation, it must be true. When in all reality many experiments are later proven false in some way by further experimentation. However, when a large amount of evidence piles up in favor of an idea, you have to know when to fold the cards, admit that you were wrong, and swallow your pride and admit you were wrong. Things like creationism, homeopathy, realigning Ki, etc. are good examples of mountains of evidence not supporting the claims these ideals preach. When people start utilizing these ideals to capitalize on others misfortune, I believe we are right to get worked up and angry at those people, especially when large amounts of evidence exist refuting their claims!

    The one thing to keep in mind is that science is all about discussion and peer-review. It’s one of the ways of working through these problems. So while it may seem intense at times, it’s just part of the process.

  18. kleenhed,

    If you can stick around and tolerate the bickering-couple vibe that sometimes develops here it can be quite enlightening. The bloggers and many of the commenters are doctors, and while they never agree with eachother on everything eventually you get to see the shape of how they think. What kinds of things they think are important, how they think about them, how they communicate with their patients. How they try to work with a patient they cannot cure.

    The concerns you raise are very familiar to doctors. Sometimes someone will respond understandingly; other times you will be ignored or get a snotty response. Often the snotty responses come from doctors who care but who are tired of justifying themselves to people who assume they are unfeeling. Other times they come from people who are angry about the harm they have seen CAM do. (In addition, of course, some of them come from people who just enjoy making snotty responses. The internet is great for that.)

    This is a good place to have intelligent discussions, but they will be geeky, meaning when people (doctors, interested laypeople) tell you that you are wrong they aren’t always going to be nice about it. There will also be people who share your point of view and will say so.

  19. Stroh says:

    In my experience we “champions of science” (heh) are never that dismissive about those seeking alternative cures and desperately wading through conflicting claims but rather those providing bogus treatment and arrogantly dismissive decades of hard work on a whim.

    Think about it. Tens of thousands of man-hours have been spent by highly qualified experts, devoting great parts of their lives, disproving links between autism and vaccines and we still have these B-rate actors and ex-playboy models denying everything for a whim. Have can we be expected not to get angry and upset?

    And don’t get me started on the CAM-prophets. They’re exploiting people for heavens sake! They’re KILLING people! Sure, most seeking care are not seriously ill but some are – and when quacks are treating cancer patients with herbs rather than referring them to real doctors I say we OUGHT to be angry and upset!

  20. micheleinmichigan says:

    kleenhed – The problem will be that all the commenters who conscientiously try to be respectful will feel like you are talking to them. All those who actually have treated someone like an idiot will think you are talking about someone else.*

    But I think you should come back. In my book, the more sensible patient advocates commenting on SBM the better.

    (I have no idea were I stand. Probably the later group, but that becomes paradoxical.)

  21. kleenhed says:

    micheleinmichigan – “The problem will be that all the commenters who conscientiously try to be respectful will feel like you are talking to them. All those who actually have treated someone like an idiot will think you are talking about someone else.”

    Could not have chuckled harder.

    OK, I will stick around and will also bear in mind that many of you have witnessed things that rightfully should make you angry (killed by CAM, why yes, that should make anyone angry).

    Thanks to all for welcoming me here.

  22. Stroh says:

    @ kleenhed

    You are ever so welcome, of course. The more the merrier.

    In my personal experience the only ones that are not are those whose only aim seem to be evangelizing their own pet faith – be it religion (faith healing), new age CAM (“I have anecdotes proving energy healing and homeopathy really works!”) or those smooth-mouthed denialists in the anti-vaccination league.

    And that’s not that we are scared of being criticized, it’s more the case of having to hear the same arguments for the 500th time from people not interested in either debate nor dialogue.

    Clearly you are not one of said people. So once more, please stay as long as you please.

  23. weing says:

    “Where did you get that idea? She said she was writing to “provide insight,” in part, into her own feelings about already being over-inundated with less than fully trustworthy information. This comment makes it sound like you think a layperson’s mode of interaction with you ought to be a one-way flow of information, where we sit at your feet and listen respectfully while you tell us not to worry about those studies showing HRT causes cancer.”

    I was not referring to her reason for writing. The rest of you comment sounds like a straw man.

  24. Chris says:

    kleenhed, I can kind of relate.

    I had to quit work due to several medical issues with my newborn, and got acquainted with daytime television. I thought they would be helpful for a new parents. (this was before the internet, the pediatrician of the day was Dr. Sears’ dad — who my doctor actually told was a bit nutty!)

    I was so very wrong.

    It seems the more sensational stories hold sway on folks like Oprah, and who ever else was on the boob tube during working hours. Everything was dangerous! From apples (remember alar?) to the way grandmothers hold babies. I just had to swear off of those shows. I have not watched an entire Oprah episode for twenty years!

    Though I did temper some of the information with the fact that I did have a subscription to Skeptical Inquirer at the time, plus I was taking the baby to some kind of medical appointment at least once a month or so. This is why I have bought one and only one copy of Mothering Magazine (it was the chiropractors claiming to cure ear infections that disgusted me).

    Fortunately I do live very close to a good resource: our local Children’s Hospital. They have many parenting classes and seminars, and I attended many. I also used their library to check out books on child development (one way to figure out how to tell if the behavior is normal for a child that age, or part of the disability).

    Of course, part of it was that my child was actually in the hospital about half a dozen times before he turned three years old (in addition to getting weekly neurodevelopmental therapy). One time he was transported there by ambulance due to seizures from what is now a vaccine preventable disease.

    By the time we got onto the interwebs, I already knew most of the stuff was dreck. Especially after venturing onto Usenet over a decade ago and encountering John Scudamore of whale.to fame!

  25. rosemary says:

    Dash, my impression is that your definition of educating, or the method you use to educate, is different than that of most people here. I hope you have a way to evaluate the effectiveness of your endeavor and that if you find it is more effective than the usual string of words most others use that you can either teach others how to use it or set up a service doing that for those who are trying to educate the general public but who don’t have the time or resources to learn and use your method.

    Tsuken, “**’bizarre’ in this context means things like the blue aliens put a chip in my tooth to spy on me because the government are making deals with the greys …. To me, the antivaxxers’ beliefs are – in a lay, rather than a phenomenological sense – bizarre indeed.”

    I haven’t followed antivaxxers. However, I have extensive dealings with silver supplement promoters and I am convinced that many suffer from serious mental illnesses that make them delusional. One, very well known and influential in silver circles who disappeared from cyberspace a few years ago, has written that my website is a front for a secret US military organization engaged in psychological warfare and that federal agents follow him around recording what he says, among other equally bizarre things, and he is not alone. Yet he has influenced many people because he can sound very rational to anyone who doesn’t know the topic or hasn’t looked closely at all his sites, now down. He used to cut and paste hundreds of citations to articles in scientific journals. Most laypeople assumed from that that his conclusions were scientific. I know the literature quite well and know that the articles did not support his conclusions.

    DREads, “as Dr. Crislip points out, it is hard for lay people to digest this information without years of training in medicine, biology, or other fields.”

    We are talking about different information. When I learned that silver was being sold as a “dietary supplement” and wanted to write a webpage warning the public about the danger and uselessness of ingesting the stuff, I tried to hire someone because writing is very difficult for me and I’m not good at it. Scientists would not do it. Journalists were afraid of the science. I said, “What science?” If someone claims that silver is an antibiotic, then you ask for verification, cases that can be independently verified demonstrating that many people had infections, took the stuff and nothing else and were cured. If they provide such independently verifiable evidence, it doesn’t show that silver is an antibiotic, it shows that more studies are required to determine that. However, if they can’t even come up with one such case, it is at best baloney and at worst fraud and that is something that the general public can understand. I wound up writing my own webpage which has convinced a lot of the general public and scientists that silver is a fraud.

  26. Rosemary on public education:

    “When I learned that silver was being sold as a “dietary supplement” and wanted to write a webpage warning the public about the danger and uselessness of ingesting the stuff, I tried to hire someone because writing is very difficult for me and I’m not good at it. … I wound up writing my own webpage which has convinced a lot of the general public and scientists that silver is a fraud.”

    Well, I’m glad you did.

  27. rosemary says:

    Kjeenhed, “And after 9 years, I just might decide that acupuncture could offer me something. Or maybe herbs or vitamins might offer me something. They might not, but I am almost 40 and I feel like I have to try something! Those ‘alternative’ options that most of you seem so quick to dismiss as ‘folk magic’ are the only options someone like me has left.”

    I cannot speak for anyone but myself. But I can tell you that I get furious with alt. promoters, not their customers, when I read statements like yours. Why? Because they are trying to sell desperate people cures when all the objectively verifiable evidence indicates that they don’t have any to sell. I am not talking about your case directly since I don’t know anything about your condition or whether or not there are alts who claim that they can cure it. I am talking from my own personal experience with a great many alts in which I know the diseases well that they claim to cure and have investigated the “remedies” they sell to cure them with, remedies which I know cannot possibly help anyone and that some of them can actually harm or even kill people.

    You have had alopecia totalis for 9 years. I have had argyria, gray skin, for over 50. Argyria is caused by ingesting silver. I got the condition from a drug prescribed by an MD who never would have prescribed it if he had read med. journals instead of fraudulent ads from drug companies in an era when they weren’t strictly regulated. Today silver is sold as a “dietary supplement” and “natural antibiotic” even though silver supplements don’t even kill common bacteria in test tubes. As I predicted 15 years ago when I learned that silver was being sold as a supplement, there are now many cases of argyria caused by them, including cases of children and teenagers.

    A furious young man once wrote to me saying that his mother had Lyme disease and asking what could be worse than that. I said, Having LD and being gray. I now know of two cases of people who took silver for LD and are now gray.

    While many alt “remedies”, may not cause bodily harm, they cost money. Most people who decide that they have to “try something” keep right on trying one useless thing after another, things for which there is no evidence to even suspect that they might help. That adds up to a lot of money that could be better spent somewhere else.

  28. squirrelelite says:

    kleenhed:

    Thanks for surfacing and welcome to SBM (and other science-based blogs like Neurologica and The Bad Astronomer and Respectful Insolence, just to mention a few of my favorites).

    And, especially thanks for taking the time to respond to and discuss our comments. Ultimately, any good blog and comment thread is about diverse people trying to participate in an at least semi-informed discussion. If you read the article and comments, think about what people are saying (or at least trying to say) and offer your own honest response and/or thoughtful questions, you can get a lot out of following the site and a lot of people will be willing to help you on your intellectual journey and point you to good resources.

    Here are a few of my favorite thoughts on science:

    1. Science is not about final, absolute, perfect answers. Rather, it is an ongoing process of trying to reduce the uncertainty in those answers. In other words, science tries to make those answers more accurate and reliable.

    2. Scientific research, and especially medical research, is about sorting out the wheat from the chaff and trying, as Richard Feynman pointed out, to avoid fooling yourself.

    3. Even if science or medicine doesn’t have a good answer for you today, there is still hope for a good or at least better answer in the future. I did a quick search on medline and found a list of 14 studies on alopecia.

    http://clinicaltrials.gov/search/open/condition=%22Alopecia%22

    7 of the studies are now recruiting. The rest are not yet recruiting.

    This won’t help you much right now, but it shows there are people still trying to look for a better answer.

    I apologize for some comments that may seem pompous, aggressive or dismissive. I know when you have been trying to explain the same ideas to someone 2 or 3 times on 5 or 10 different blog-comment threads it eventually gets frustrating and you don’t always have the time or energy to go over it all again thoroughly, carefully, and “once more with feeling”.

    Still, we mostly manage at least to respond “in kind”.

    Good luck on your journey.

  29. squirrelelite says:

    Dash, BillyJoe, Michelleinmichigan, DReads, et al:

    One resource I recently re-listened to and think offers some good advice on communicating with others is Brian Dunning’s Skeptoid episode:

    http://skeptoid.com/episodes/4116

    I have a couple of friends who are very enamoured of homeopathy and natural/herbal/nutritional supplements, etc. I have tried to follow his suggestions to be honest about what you think, but let the other person bring up the question, etc. Their friendship and our long-term good relations are more important to me (at least at the moment) than winning a debating point.

    I can’t say that I have any great results to point to as yet, but I am still hopeful.

  30. squirrelelite says:

    kleenhed and rosemary,

    One more comment I forgot to include in my little tome.

    For people who have a condition for which there is no good or satisfactory treatment at present, I offer this advice.

    First, do no harm. Stay away from treatments, supplements, alternatives such as chelation or silver supplements for which there are know, demonstrable, negative side-effects.

    Two, don’t spend more than you can easily afford.

    And, when someone tells you about product X that works great and has no side effects, keep in mind Wesley’s comment from The Princess Bride:

    “Life is pain. Anyone who tells you otherwise is selling something.”

  31. weing says:

    kleenhed,

    A drowning person will grasp at a razor. People during 9/11 jumped out of the windows of the Twin Towers to avoid the flames. None of these actions save them. Your desperation is understandable.

  32. Th1Th2 says:

    Stroh,

    “Now, what would you prefer? An easy fight with a guaranteed win or an all out struggle for your life? That is the primary difference between immunity through vaccination as compared to immunity through infection.”

    Literally, that is just rubbish. The immune system does not differentiate between an infection from vaccine antigens and an infection from natural exposure. Hence, you don’t choose what kind of crap you are going to expose/inject yourself to. Either way is an act of barbarism and unhealthiness that corrupts the very essence of immunity.

  33. DREads says:

    DREads, “as Dr. Crislip points out, it is hard for lay people to digest this information without years of training in medicine, biology, or other fields.”

    We are talking about different information. When I learned that silver was being sold as a “dietary supplement” and wanted to write a webpage warning the public about the danger and uselessness of ingesting the stuff, I tried to hire someone because writing is very difficult for me and I’m not good at it. Scientists would not do it. Journalists were afraid of the science. I said, “What science?” If someone claims that silver is an antibiotic, then you ask for verification, cases that can be independently verified demonstrating that many people had infections, took the stuff and nothing else and were cured. If they provide such independently verifiable evidence, it doesn’t show that silver is an antibiotic, it shows that more studies are required to determine that. However, if they can’t even come up with one such case, it is at best baloney and at worst fraud and that is something that the general public can understand. I wound up writing my own webpage which has convinced a lot of the general public and scientists that silver is a fraud.

    I am glad you did this as well. If less people used silver as a supplement because of your webpage, then this is a good thing. It would take me time to write about how I weigh the authoritativeness of different kinds of sources. I am not saying people who aren’t medical doctors should keep not write about medicine. Nor am I saying people should only read medical information from experts. Rather, people should develop good sense on how to judge information they read, where it comes from, and the consequences of acting on it. In the absence of such sense, people should only read expert advice. When it comes to making important health decisions (e.g. treating X cancer with therapy Y), it’s best to corroborate non-expert information with legitimate sources written by experts.

    Unfortunately, for every accurate web page on health information, there are many inaccurate web pages. I do not know the best strategy to counter this. It would be great if companies like Google develop a technological solution such as a special search engine for ranking pages on authoritativeness rather than PageRank. Another strategy is to encourage non-experts to write about fraud and scams such as your webpage on silver supplements. I do not know enough about the dynamics of health education to draw a conclusion on the best way to proceed.

  34. weing says:

    Stroh,

    This idiot still hasn’t learned what an infection is. Don’t waste your time.

  35. Watcher says:

    The funny this is, he says:

    The immune system does not differentiate between an infection from vaccine antigens and an infection from natural exposure.

    But then still goes on to believe that vaccination is “… an act of barbarism and unhealthiness that corrupts the very essence of immunity.” So it’s the same … but different.

  36. Watcher says:

    Sorry, that first part is supposed to read “The funny thing is …” :D

  37. JMB says:

    Although it was a diversion from the topics in discussion, I feel I should still correct my previous statement. I oversimplified the calculation of radiation exposure to the breasts from cigarette smoking. So please don’t quote it. The radiation exposure from cigarette smoking to the lungs is much easier to measure than the radiation exposure to the breasts. It is more reliable to compare the risk of dying from cigarette smoking versus mammography, than to come of with estimates of radiation to the breasts from cigarette smoking.

  38. JMB says:

    For anybody following these articles and threads for medical information that might be used to make a decision about healthcare, I would like to make a point that is more than just a legal disclaimer. It is important to be informed (and this site is good for information, but the discussions can be caustic) when you have to make a decision. Be aware that making decisions from that information is usually not that straightforward, when you are dealing with the information from medical science. Medical science tends to deal with groups of patients that are characterized by the group’s average. Patients are individuals. We have medical students spending most of their time learning what the information is about the average patient and average disease, the textbook cases. In residency, doctors learn how to use that information to practice medicine (translating the science into art). In both medical school and residency the students are taught how to analyze the information from textbooks and the body of medical scientific literature (which is SBM).

    So being versed on the latest information from medical science is not a guarantee that you can come up with the right decision. It is always important to listen to the recommendations of someone who is practiced at making decisions from the information, a doctor that knows you, and how you may or may not be like the average of those groups. The doctor can help you understand the importance of different factors in the decision. The doctor can also make sure that you have considered all that may be factors. The decision is ultimately yours, but guidance is still helpful.

  39. BillyJoe says:

    Kleenhed,

    “after 9 years, I just might decide that acupuncture could offer me something. Or maybe herbs or vitamins might offer me something.”

    I don’t understand this. You just decide that acupuncture could offer you something? Why would you do that? Or herbs or vitamins. Why those as opposed to a hundred and one different unproven remedies?

    “They might not, but I am almost 40 and I feel like I have to try something! Those “alternative” options that most of you seem so quick to dismiss as “folk magic” are the only options someone like me has left.”

    Why do you call them options? After nine years, why do you suddenly want to parachute into the unknown? If there is no plausible mechanism and no evidence for effectiveness, why are we not justified in calling it “folk magic”?

    regards,
    BillyJoe

  40. BillyJoe says:

    Thimple1Thimple2,

    “Literally, that is just rubbish. The immune system does not differentiate between an infection from vaccine antigens and an infection from natural exposure. Hence, you don’t choose what kind of crap you are going to expose/inject yourself to. Either way is an act of barbarism and unhealthiness that corrupts the very essence of immunity.”

    Thimple take home methage:

    Both vaccines and pathogenic organisms induce immune reactions and can cause disease.
    But here’s the BIG difference:
    Pathogenic organisms cause disease a whole lot more frequently than vaccines, in many cases 100,000 to 1,000,000 times more frequently.

    Now pith off.

  41. provaxmom says:

    BillyJoe wrote: “Why do you call them options? After nine years, why do you suddenly want to parachute into the unknown? If there is no plausible mechanism and no evidence for effectiveness, why are we not justified in calling it “folk magic”?”

    With both pregnancies, I approached and surpassed 41 weeks gestation, with nary a contraction. Now, all the women on here will probably commiserate with me, in that at 41+ weeks, you want that baby out…….NOW!

    So I scoured the internet, and found myself eating pineapple, spicy food, walking so much the dogs hid when I got out their leashes, red raspberry leaf tea and a few other “folk magic” remedies to induce labor.

    None worked and both times I found myself medically induced (with no regrets btw).

    But my point is, I don’t have a problem with parents or individuals trying otherwise harmless remedies. Note that I did not list castor oil as one of my folk remedies–as it can induce labor but also serious health problems.

    I was recently in an argument with a parent who insists her autistic son’s GI issues were finally resolved when he started sleeping on a magnetic mattress. Eh–who has the time, right? Sleeping on a magnetic mattress is harmless, imo. Chelation is not. GF/CF is not. As are many of the other therapies we frequently discuss on here.

    My autistic son does “Listening Therapy.” It’s supposed to train his brain how to listen properly. Ok, not proven to work. Otoh, listening to classical music for 30 mins a day is not harmful and he seems to enjoy it.

    So yes, there are options. Unproven, sure. But if they are harmless and I want to throw away my money, so be it.

  42. Dash says:

    Billyjoe – I’m not sure what you mean by a strait jacket, we do what works for our children, our circumstances, and ourselves, and that has been different for each child and at different times. We also follow what research there is available, which is abysmally little for something as important as parenting!

    I don’t breastfeed and didn’t use cloth nappies or co-sleep because they were cool and trendy or fit in with my friends. Cloth won hands down on cost, convenience and reliability. Co-sleeping (both bed-sharing and in arm’s reach at different times) was about sanity with a baby who was, and remains, a truly appalling sleeper, she now co-sleeps with her sister. And breastfeeding is a no-brainer when it’s easy with the WHO recommendation of feeding to 2 years and beyond.

    rosemary – I always find it interesting reading science blogs, as a professional educator I seem to view some things very differently to other writers and commentators. You’ve put your finger on the hard bit – seeing if it makes a difference. I’m in the strange position of only knowing how I’m doing through testimonials, while knowing that anecdotes prove nothing! That’s one of the reasons I’m talking to the education department – I want to actually be able to collect some data and see if it makes a difference. My link is in my name, I’d love you to have a look.

  43. micheleinmichigan says:

    provaxmom said “My autistic son does “Listening Therapy.” It’s supposed to train his brain how to listen properly. Ok, not proven to work. Otoh, listening to classical music for 30 mins a day is not harmful and he seems to enjoy it.”

    Provaxmom, you probably you already know this, but I thought maybe it could be helpful for another reader.

    There is a technique called auditory training used in children with hearing loss and auditory processing disorder. It is often performed by either Audiologists or TOD (Teacher of the Deaf) to train children (and their brains) to use residual hearing and/or amplification.

    Although it is outside my experience, I think this technique is also used in ASD (maybe that is what you are referring to).

    For instance, at my son’s school the HI and ASD classes meet together for their “music and movement” class, which they use partly as auditory training and partly to motivate vocalization and also to have fun and get their wiggles out. :) This would be one of the least formal forms of auditory training. The TOD also performs more formal forms and I believe Audiologists perform training using auditory stimulation in the sound booth, etc.

    So I’m guess what I’m saying is that it is plausible that Auditory Training could be helpful to a child with a sensory issue of some kind. IM not medically trained O. And as long as it is harmless, what the hey!*

    *Not that you needed my approval :) Just sharing my thought process.

  44. Stroh says:

    Th1Th: You clearly aren’t listening to a word I’m saying so a serious discussion is evidently pointless. Stick around if you will but everything you write will henceforth be met with ridicule:

    Everything you write is wrong, you know nothing of immunology and you are too ignorant to listen to people who do. You are stupid, stupid, stupid!

  45. micheleinmichigan says:

    Regarding patients seeking alternatives for untreatable or difficult to treat diagnoses.

    Speaking from personal (anecdotal) experience as a patient and parent of a patient, I think it’s helpful for the patient to know and the medical professional to remember that any significant health change in a patient often entails a grieving process for the patient and/or the patients parents.

    The stages of grief are often stated as such: Denial, Anger, Bargaining, Depression, Acceptance. It’s often pointed out that they may not present in that order, they may not all present and that people may return to previous stages experienced when sparked by a life event. It think it’s also important to point out that even a relatively minor loss may need a grieving process. Although, probably not something so minor as my lost keys :)

    I think it can be helpful for a patient or patient’s family members to contemplate where they are within those stages when dealing with treatment decisions of any kind.

    I think it is also helpful when medical professionals (or even friends or family) remember these stages. For instance, when they talk with a patient that is looking for the easy answer to a rather complicated disease, that patient may be experiencing the stage of denial. Maybe the patient will have moved on to another stage in a few months or maybe they need some help or support to move on, etc.

    It’s just good to remember that experiencing this stage of denial is rather predictable and natural for the patient, it does not mean that the patient is inherently irrational or pigheaded.

    I know a tangential thought, but it was sparked by a couple of previous comments.

  46. micheleinmichigan says:

    Stroh on 16 Mar 2010 at 10:21 am

    “Th1Th: You clearly aren’t listening to a word I’m saying so a serious discussion is evidently pointless. Stick around if you will but everything you write will henceforth be met with ridicule:

    Everything you write is wrong, you know nothing of immunology and you are too ignorant to listen to people who do. You are stupid, stupid, stupid!”

    Stroh – whoa there! – once again, the name calling probably doesn’t help (although it may feel good.) I mean, if you are actually dealing with someone with inferior cognitive skills, is it productive or sporting to call them stupid? Or if they are not lacking in cognitive skills, why call them stupid?

    Doesn’t it just make you look out-of-control and a bully to the audience that you are actually trying to convince? (not TH1TH2 one might wonder if they will ever be convinced without medication.)

    Or, if you insist on insulting someone, could you be a bit more creative? You know the judge from Switzerland scores almost entirely on artistic content.

  47. kleenhed says:

    BillyJoe:

    “I don’t understand this. You just decide that acupuncture could offer you something? Why would you do that?…”

    I have had acupuncture sessions in the past for other reasons. During a few of my later sessions, my acupuncturist and I decided to focus on my scalp, just to see what would happen. We probably had about three sessions that included scalp treatment. I definitely did notice some hairs growing around the sites where she placed her needles. This could have been coincidence, this could have been placebo effect (if so, though, who cares? I don’t care if my mind does it or if the treatment does it, I just would like my hair back now, please already). The only reason I stopped going to acupuncture is that she wanted me to increase my sessions to 4-6 times a month. I did not have the time or money then to continue treatments. At that point I turned my energies toward just dealing with acceptance of the fact that I was now a bald, eyebrowless, eyelashless, alien-looking creature. But damn it all, I wasn’t going to let it ruin my life, either.

    “…Or herbs or vitamins. Why those as opposed to a hundred and one different unproven remedies?”

    Why those as opposed to a hundred and one different unproven remedies? Well, for starters I have to begin somewhere. And I can’t do them all at the same time. My mother (a nurse) works with a woman who claims she cured her alopecia by taking B vitamins and zinc. Is that true? I have no idea. But like so many others have stated before me, if it isn’t going to hurt me, why not? I may not have anything to gain, but what have I got to lose by taking some B vitamins and zinc, if I take them in safe quantities? What have I got to lose besides a few extra dollars a month? I am also trying – just attempting – something that I KNOW you will all refer to as “snake oil”. I have read some good user reviews of a cream called Calasol. I am trying one tube of it on my eyebrows (the tube should last me six months). This will definitely not sit well with any of you, I am sure (it has never gone to clinical trial), but… the ingredients list doesn’t seem too frightening, and the cost was do-able, and the results for some seemed to make it worth the risk to me to try it. (Feeling sheepish now for even admitting this to you guys, but again, it isn’t gonna kill me and seemed worth the risk to try it.)

    “Why do you call them options? After nine years, why do you suddenly want to parachute into the unknown?”

    Because, after 9 years, I am tired of it. I have spent the last 9 years just trying to accept it. Then one day (at the start of this year) I said to myself, why should I have to “accept” it? What if there is something I can do to change it? Alopecia is a strange “disease”, indeed. Some treatments work for some people, and not others. Some treatments may not be “condoned” by the medical community because they haven’t been proven to work in enough people? How would I know that? I do know this: my grandfather had alopecia, but he died with a full head of hair. My mother told me that my grandmother rubbed some sort of special ointment on his head every night & eventually his hair came back. Why did it do that? Was it the ointment? Was it the act of rubbing itself, which perhaps increased blood flow & stimulated the hair follicles? Can we ever know for sure? There isn’t a lot of knowledge yet on how alopecia works, what triggers it to start, what triggers it to end, etc. And since there aren’t a lot of treatment options, I can either (a) continue to just “live with it” as I have done for 9 years or (b) venture out of my comfort zone and at least give a few of these options a try. As long as I am not hurting myself, why not? Oh, and for the record, several of the medically-condoned treatments for alopecia ARE known to be potentially hurtful to the body. The most common treatment is steroid injections into the scalp. I did this for three months and it took me a full year to be “normal” again (whatever that is). I lost 12 pounds in three weeks because I was disgusted by food. I thought everyone was out to get me. I was aggressive and angry, and in general not myself. Another sanctioned treatment (which I have not tried) is PUVA (Psoralen combined with UVA treatment). I will not try this treatment because the side effects are unacceptable to me (up to and including an increased risk of squamous cell carcinoma, basal cell carcinoma and malignant melanoma). With sanctioned treatments like these, who needs enemies? But I jest.

    At the end of the day, I know now that you all are much more upset about CAM treatments that actually harm people than you are about how someone like me might be interested in trying acupuncture, vitamins, or (gasp) “snake oil” treatments. I am enjoying the debate nonetheless and welcome your points of view and your expertise (even if they don’t convince me completely).

  48. kleenhed says:

    Chris
    “I had to quit work due to several medical issues with my newborn”
    I hope your child is OK.

    “It seems the more sensational stories hold sway on folks like Oprah”
    This is so true (specific to vaccines, I think I came across every sensational story out there but had to DIG for good info), although it makes no sense. Something is definitely wrong with our culture when sensationalism drowns out truth at every turn.

    rosemary
    “You have had alopecia totalis for 9 years. I have had argyria, gray skin, for over 50. Argyria is caused by ingesting silver. I got the condition from a drug prescribed by an MD who never would have prescribed it if he had read med. journals instead of fraudulent ads from drug companies in an era when they weren’t strictly regulated.”
    I have heard of argyria, I’m sorry you have had to deal with this. I am sure after 50 years you have learned a wealth of coping mechanisms to get you through it. Still sucks, though.

    squireelelite
    Thank you for your comments and your link to various studies and clinical trials on alopecia. I am already participating in the first one, and the rest either don’t apply to me (different type of alopecia or cancer-related) or are trials that I would be uncomfortable participating in (i.e., the Botox one). But I do appreciate the link! And your comments, too (especially the PB reference – I love that movie).

    weing
    “A drowning person will grasp at a razor.”
    Yup.

  49. Stroh says:

    @ micheleinmichigan:

    It’s infantile and trollish on purpose :P I got curious to see how a troll would respond to being trolled at. It will probably backfire now though.

    If my previous responses to Th1Th2 didn’t sway the audience in the favor of reason nothing probably will.

    That, and I have an odd sense of humor.

  50. micheleinmichigan says:

    Stroh, oh. very well then. carry-on.

    But, as a sometimes card carrying member of the UFSP (Union for Stupid People), I must protest that we don’t want TH1TH2 associated with our organization.

  51. Chris says:

    kleenhed:

    I hope your child is OK.

    No, he is permanently disabled. You can see why I have very little patience with the likes of Th1/Th2.

  52. weing says:

    “The stages of grief are often stated as such: Denial, Anger, Bargaining, Depression, Acceptance. ”

    Interesting that you mention this. I recently heard a podcast with George Bonanno on the Berkley Groks talking about this. You might want to take a listen. I think it’s the Feb 3 podcast.

  53. micheleinmichigan says:

    Thanks weing, I will.

  54. Harriet Hall says:

    While the stages of grief are widely accepted, the idea that everyone passes through all of them in the same order is one of the “50 Great Myths of Popular Psychology” in the book of that title.

  55. Stroh says:

    @ Harriet Hall

    Yep, they are. It never really made much sense to me even before I heard that – its too convenient and doesn’t even apply to everything.

    Denial and anger, sure. But bargaining? With whom is a terminal cancer patient expected to bargain with? God?

    Acceptance is another debatable one, a lot of people I’ve met never made it past anger or depression. Some others simply backtracked to denial and stayed there.

  56. micheleinmichigan says:

    actually, here is that grief article. – http://ia341343.us.archive.org/1/items/groks413/groks020310_vbr.mp3

    Some very interesting observations on grief from a clinical and anthropological perspective. Firstly the speaker talks about the flaws in the 5 stage model I mentioned above. I can always count on someone here to point something like that out to me. :)

    One interesting thing he mentions is that when feeling sad, people become deeply contemplative and realistic. This helps them cope by giving them the focus needed to adjust their thoughts and life style to accommodate their loss.

  57. Stroh on the stages of grief:
    “With whom is a terminal cancer patient expected to bargain with? God?”

    Yes. Literally. I have a friend with cancer. He’s 36. He’s had it for a couple of years now. He’s probably going to die before the end of the year. He had a religious ephiphany recently in which he decided he would become a better person (less Angry) and God would lead him to a new treatment which would work.

    I thought Hmm… bargaining, huh. Stages of grief. Had no idea they were so literal.

    (I think he moved on within a couple of weeks and he’s now more or less in the Acceptance phase.)

    If you read her comment, Michele was very clear that she didn’t think the Five Stages were absolute and sequential. If you rephrase it as “five aspects” it can be a useful model allow you to contextualize odd moods and peculiar reasoning as different ways that people wrestle with loss.

  58. micheleinmichigan says:

    Harriet Hall
    “While the stages of grief are widely accepted, the idea that everyone passes through all of them in the same order is one of the “50 Great Myths of Popular Psychology” in the book of that title.”

    The podcast addresses this also.

    Stroh – I remember when my four year old hamster was dying when I was eight I did some serious bargaining with God to save that hamster. Needless to say, it didn’t work.

    Actually one of my personal experience sort of demonstrate how I think grief can work within a medical situation.

    Years ago my husband and I tried to start a family. It became apparent things were not happening and we were referred to a Reproductive Endocrinologist. After a good number months of diagnostics and attempts at reproductive hormone therapy which were not helpful, it became clear that our only medical option was a form of IVF.

    At that time I read an article about Mind/Body connections and how depression and other negative emotions had a negative impact on fertility. Since I was feeling pretty upset and really stressed, I decided to see a therapist who could fix me, (joking).

    At the end of maybe the third session the therapist offhandedly said something about how it’s appropriate to grieve when we have to deal with a loss or change in our expectations.

    I almost slapped for forehead and shouted “Oh shit, I forgot to grieve.”* I had been so focused on the diagnostic process and all the details and research of what medical process was going to fix everything, that I had forgotten to just sit for a few moments now and then and be sad that things hadn’t worked out how I had planned. Once I did that, it was much easier to look at the big picture, see all our options and chose the one that worked best for us. **

    Really, I don’t know how typical that is, but whenever I see someone who is sort stuck in that “fixing” mode that I was, I always think of that. It’s not very scientific though.

    *Yes, I’m not the most emotionally introspective person sometimes.
    **For us, that was adoption.

  59. Stroh says:

    @ Alison Cummins

    Huh. Look at that – could be a cultural thing. Over here in Sweden religion is not as big a thing as it is in the US, and none of the terminal patients I’ve had contact with ever entered the bargaining state. Possibly because none was very religious. Some where religious to an extent but somehow they never figured bargaining with God would actually work.

    Oh, and I never intended it to be criticism of Michele. It was more of a general blow aimed at the oversimplification of pop-psychology.

  60. provaxmom says:

    micheleinmichigan (one L) wrote:
    “There is a technique called auditory training used in children with hearing loss and auditory processing disorder. It is often performed by either Audiologists or TOD (Teacher of the Deaf) to train children (and their brains) to use residual hearing and/or amplification.

    Although it is outside my experience, I think this technique is also used in ASD (maybe that is what you are referring to).

    Similar. It was started by his OT, and we purchased the CDs and equipment ($300) to continue on our own. We figure it can’t hurt, he has CVI so we know his brain doesn’t process visual signals properly, not sure how well his receptive listening is, trying this.

    I know there are studies supporting this, but my core belief is that it’s not going to make him any less autistic, kwim? If it encourages him to speak sooner and better great–but we’ll never really know if it works. It’s not like a “hey we started this program and 2 weeks later he was talking!” kind of thing.

  61. Stroh says:

    @ Michele

    That is a very good point, grief is very important. Being stuck in denialism is very bad for anyone as it prevents you from facing reality and making good decision.

    The problem I mainly have with “The Five Stages Of Grief” is how some people seem to believe that they are some sort of requirement. They fully expect that unless you go through them all in the right order you will never recover.

    In other words, they will urgue you to get angry when acting as if in denial, then bargain and then to “face your sorrow”. It easily leads to a form of intolerance towards those who do not grieve according to this template.

    Supporting someone after an emotional trauma is about listening to the needs of the individual – something you provided an excellent example of when you mention people as being in a “fixing mode”. Thats the right way to go about it. Not, like some other people, to treat them like stereotypes.

  62. rosemary says:

    kleenhed, “I may not have anything to gain, but what have I got to lose by taking some B vitamins and zinc, if I take them in safe quantities? What have I got to lose besides a few extra dollars a month? I am also trying – just attempting – something that I KNOW you will all refer to as ‘snake oil’.”

    I will not call something”snake oil” unless it is being promoted to treat a disease when there is no evidence that it does or when there is evidence demonstrating that it is ineffective. I don’t believe there is anything wrong with experimenting as long as there is information available to give you a good idea of the risk involved in the experiment and you are comfortable with that degree of risk. That applies to any treatment, evidence-based or pulled from a hat.

    I suspect that most people reading these blogs are very aware of the fact that approved drugs are not perfect and that they can cause serious harm, even death. I also suspect that like myself they believe that one must weigh the benefits against the risks when deciding whether or not to use them. However, the difference between scientific medicine and the unscientific kind is that the former is studied in depth so that there is usually a great deal of reliable information to base a decision on whereas the latter has usually never been adequately studied so that often taking an alt remedy is like playing Russian roulette.

    What I personally do when I am told of an amazing cure is try to verify the story independently to determine first of all if the story itself is true, but I can understand why someone wouldn’t want to bother doing that with things like vitamin B and zinc.

    From what you say about your grandfather and the lady who claims that she cured herself with vitamin B and zinc, I would guess that your condition sometimes resolves itself for yet unknown reasons which is actually true with a lot of diseases and conditions and which is why drugs must be tested in large numbers of people to determine if they are effective. That kind of resolution or cure is part of what comes under the umbrella of the term “placebo”. Our bodies are like chemical factories in which many different unknown reactions continually take place, but few people who haven’t had experience with the development of drugs usually ever think of that. The more likely a disease is to go away on its own, the greater the number of test subjects that are needed to accurately evaluate a drug used to treat it and the more likely it is to be targeted by people selling alt remedies which they think cure it.

  63. micheleinmichigan says:

    Supporting someone after an emotional trauma is about listening to the needs of the individual – something you provided an excellent example of when you mention people as being in a “fixing mode”. Thats the right way to go about it. Not, like some other people, to treat them like stereotypes.

    Yes, we are on the same page then.

  64. micheleinmichigan says:

    “Denial and anger, sure. But bargaining? With whom is a terminal cancer patient expected to bargain with? God?”

    Not to overemphasis the bargaining thing, but I just wanted to mention that when I was search out those 5, controversial ;) phases.

    Two examples were on Diabetes and Chronic Kidney Disease sites. I believe they both used diet as bargaining examples. Meaning that people went through phases where they believed if they tried a new diet or were really, really perfect with their diet that their disease should improve, which is not always the case. Is that a form of bargaining or too much a stretch? I don’t know.

    I think the whole stages thing is only useful IF it gives you some insight into what you or someone else might be experiencing. I don’t think it is a good manual for how grief “should” be.

    God (or quantum physics) save us all from people who think they know how we SHOULD feel.

  65. squirrelelite says:

    michelleinmichigan and Stroh,

    I suppose you could try playing chess with the devil, but I don’t think there are any RCT’s on the results:

    http://en.wikipedia.org/wiki/The_Seventh_Seal

  66. micheleinmichigan says:

    …and squirrelelite throws it in all the way from left field. :)
    Good one.

  67. Th1Th2 says:

    BillyJoe,

    “Both vaccines and pathogenic organisms induce immune reactions and can cause disease.”

    Well said. I just hope that other vaccine apologists will listen to you. Just a reminder though, they don’t want to hear about vaccine-induced diseases. It’s blasphemy. The sacrament of vaccination is sacred to them and its content is pure (yeah, pure crap).

  68. Chris says:

    That is why we no longer use the OPV, and switched to the IPV.

    The chances of getting a disease from a vaccine is much much much much much smaller than from the actual virus or bacteria.

  69. Th1Th2 says:

    Stroh,

    “Everything you write is wrong, you know nothing of immunology and you are too ignorant to listen to people who do. You are stupid, stupid, stupid!”

    I believe this guy though when he said:

    “Both vaccines and pathogenic organisms induce immune reactions and can cause disease.” —BillyJoe

    Maybe, just maybe, you can shift your interest to pathophysiology and pathogenesis.

  70. Th1Th2 says:

    Chris,

    “The chances of getting a disease from a vaccine is much much much much much smaller than from the actual virus or bacteria.”

    Choosing the lesser evil or should I say crap is not even a healthy option, kwim? How about the chance of not getting any diseases at all? Let’s say a toddler who remained naive (unvaccinated) to polio, hepB, rotavirus, diptheria, pertussis, measles, mumps etc. Would you consider him being unhealthy thus susceptible?

    Inactivated vaccines only limit the spread of infection producing less and benign symptoms of the disease.

  71. rarchimedes says:

    We managed to get through the whole discussion of psychology without noting the role of instinct in some of our reactions. We have a built in xenophobia that tends to extend across all aspects of the strange as opposed to what we have accepted as the normal. What that means is that we have a great barrier to overcome when we challenge what people have accepted as the normal. Words from those who are not of our tribe are to be treated with distrust, no matter how reasonable sounding. That level of doubt is found in all of us, no matter how educated. We must work to overcome it on a daily basis, and we must be educated to the need to overcome it, for we do not naturally see that need. It is not hard to understand how such instincts evolved over the long term, because the needs of larger society have only really been in place for this tiny bit of our existence.

    The group of people with autistic children have accepted each other as their tribe, and they find no working answers to their questions and problems in the rest of society or in science. They are left to whatever anecdotal information that they can glean and the tortuous paths marked by accidental or spontaneous cure found in almost every illness. Add to that the fact that few people are educated in a deep understanding of the scientific process, and you have an almost irretrievable combination. These same people will respond almost instantaneously if a high percentage cure is found, and they may or may not show much interest in a scientific explanation of the causation of autism, should that be found, unless it offers some cure or treatment. I believe that is the long and short of it.

  72. Zoe237 says:

    Kleenhed, I’ve thought similar about the site as well. I’ve come more to the conclusion that it’s a few of the commenters rather than the bloggers. Particularly when people respond to a “troll” really nastily, but when you haven’t been here awhile, you don’t know that poster is a troll. (So, just fyi, responding to th1th2 or whoever like a jacka$$ damages the cause, although personally, I just skip to the next comment). Dr. Gorski in particular seems very fair. Squirelelite, pmoran, calliarcale, jmb, windriven, Rosemary are a few of the commenters who are really knowledgeable, AND pay some attention to how they phrase their points. I won’t name the alternatives. ;-)

    The other thing that still gives me that impression is the still near constant attention given to alt-med and anti-vax, although “science based medicine” to me should look at all aspects of medicine, especially conventional (which is what I use, and is NOT all science based. I mean, cmon, how’s about a post on the amount of money wasted on conventional cold remedies?). Yes, I know there have been a few.

    Oh, and ita with windriven about religion.

  73. squirrelelite says:

    Michelleinmichigan and zoe237,

    Two kudos in one night!!!

    I am honored. Thank you.

    Actually, second base was about my range. I didn’t have enough arm for an outfielder.

    As someone “who remained naive (unvaccinated) to polio, hepB, rotavirus, diphtheria, pertussis, measles, mumps etc.” when I was growing up, I got pertussis, measles, mumps and a few other illnesses. They were no fun! Fortunately, I didn’t have any serious side effects and managed to retain my fertility.

    Also, fortunately, I managed to avoid polio, hepatitis and diphtheria and rubella(I may have had a diphtheria vaccination. They were available.) until effective vaccines were available. But we worried about them, especially polio and rubella, and I was very happy to get the first oral polio vaccine.

    Having grown up in a family of five kids who all got those diseases and raised four kids who all got their vaccines, I much prefer the results with vaccination. But, that is mere anecdote.

    Having followed these blogs for a couple of years and occasionally done a little research to inform myself before scribbling up a comment, I have noticed that the annual statistical data show a major drop in both incidence of the disease itself (such as measles) and major side effects like death following the introduction of effective vaccines.

    For that reason, I continue to vote with my feet and got my seasonal flu shot last fall, got the H1N1 shot at a clinic at the school where I work and got (probably) the Tdap booster a few months ago.

  74. squirrelelite says:

    Kleenhed,

    Sorry I missed your comment earlier. I was a little busy.

    Good luck in your study.

    I agree with you about botox for alopecia. That even sounds weird. I wonder what plausible mechanism they are investigating for that to help!?!?

    Coincidentally, I wasn’t on-line earlier because I was watching NCIS:LA, who did a show a few weeks ago called “LD50″ about a possible botox terror weapon. That is nasty stuff! It’s even worse than the polonium I did a little work with many years ago. (Fortunately, I wasn’t using the most dangerous isotope.)

    Anyway, hang in there.

  75. BillyJoe says:

    Dash

    “Billyjoe – I’m not sure what you mean by a strait jacket…”

    Just that if you “are known” for having certain opinions, and you have been set up as an opinion leader or have set yourself up as an opinion leader within a group of like-minded individulas, you may continue to hold onto those opnions when they are long past their use by date (though I don’t mean to imply that the use by date has come for your opinions)

  76. BillyJoe says:

    kleenhed,

    “At that point I turned my energies toward just dealing with acceptance of the fact that I was now a bald, eyebrowless, eyelashless, alien-looking creature. But damn it all, I wasn’t going to let it ruin my life, either.”

    I love you already :)
    (Actually, I happen to know someone with alpecia totalis and, I have to say, I’m strangely attracted to her . Unfortunately she has a very attentive husband :()

    “Why those as opposed to a hundred and one different unproven remedies? Well, for starters I have to begin somewhere.”

    I suppose I would have to be in your situation to understand that. I can’t ever see myself trying unproven treatments. (Hell, I won’t even get my prostate test – even though my father died of prostate cancer – because the test is of unproven value). But I’ve read too much about them and seen too many come and go to pay any heed to alternative medical treatments.

    “My mother (a nurse) works with a woman who claims she cured her alopecia by taking B vitamins and zinc. Is that true? I have no idea.”

    Have you seen any evidence that it does? ;)

    “especially the PB reference – I love that movie”

    PB? I think you meant BP. But, yes, great movie. Though, in my opinion, EN heaped it over BP (but, then, I am not a woman).

    regards,
    BillyJoe

  77. BillyJoe says:

    BillyJoe said: “Both vaccines and pathogenic organisms induce immune reactions and can cause disease.”

    DoubleThimple said: “Well said. I just hope that other vaccine apologists will listen to you. Just a reminder though, they don’t want to hear about vaccine-induced diseases. It’s blasphemy. The sacrament of vaccination is sacred to them and its content is pure (yeah, pure crap).”

    Typical of you to cherry pick your quote.
    You forgot this bit:

    “But here’s the BIG difference:
    Pathogenic organisms cause disease a whole lot more frequently than vaccines, in many cases 100,000 to 1,000,000 times more frequently.”

    OH, yes, and this bit:

    “Now pith off.”

  78. BillyJoe says:

    Zoe,

    Dr. Gorski in particular seems very fair. Squirelelite, pmoran, calliarcale, jmb, windriven, Rosemary are a few of the commenters who are really knowledgeable, AND pay some attention to how they phrase their points. I won’t name the alternatives. ;-)

    Oh, come on, why should I miss out? :D

  79. weing says:

    Zoe,

    No way! I don’t even watch Dr. House.

    kleenhed,

    I have had several patients with alopecia totalis but, fortunately, they were elderly men and didn’t consider it a problem. I am sure you have looked into where there is ongoing research on this. I wonder about the acupuncture caused response. There is evidence of hair follicle regeneration induced by abrasions via the Wnt signaling pathway. Just a thought about the possible mechanism for your experience.

  80. micheleinmichigan says:

    BillyJoe – apparently it’s going to make me crazy. EN?

  81. squirrelelite says:

    Well, BillyJoe, you’re certainly on my list of people whose comments are usually informative and make sense. But, any informal quick list like that is bound to be incomplete.

    By the way, PB is The Princess Bride. I’m not sure about BP. Is that blood pressure or British Petroleum or something else?

    I’m still waking up and my mind is about half speed this morning.

  82. BillyJoe says:

    micheleinmichigan: “BillyJoe – apparently it’s going to make me crazy. EN?”

    squirrelelite: “By the way, PB is The Princess Bride. I’m not sure about BP. Is that blood pressure or British Petroleum or something else? I’m still waking up and my mind is about half speed this morning.”

    Sorry for the confusion. It must be me who’s half asleep. I was certain there was a reference to Tyler Durden back there somewhere. Tyler Durden was, of course, a character in the movie “Fight Club” played by Brad Pitt. So, when you said you love PB, I thought you got the letters reversed and meant BP for Brad Pitt.
    EN is, of course Edward Norton who was second billed after Brad Pitt but played the lead character and narrator in the movie.

    —————–

    squirrelelite: “Well, BillyJoe, you’re certainly on my list of people whose comments are usually informative and make sense.”

    Thanks, but I’m not certain that I deserve it. I am amazed by some of the posts I read here. I just try to contribute a little in return. But I was actually referring to this bit:

    Zoe: “I won’t name the alternatives. ;-)”

    She was referring to “people who respond to a troll really nastily” for example those who respond “to th1th2 or whoever like a jacka$$”. That would be me and weing.

    Th1Th2 is one of those individuals who doesn’t know what he is talking about and doesn’t know that he doesn’t know and therefore carries on like everyone else is an idiot. You cannot get through to them whatever you try and if you ignore them they feel they have a victory – I silenced the critics! Fun and games is the order of the day in my opinion.

  83. micheleinmichigan says:

    Ahhhh, That was my Tyler Durden reference (in another article) and strangely when I saw EN I thought. Edward Norton? He’s not in the Princess Bride. :)

    I got an EN preference too, and I’m chick.

  84. Zoe237 says:

    At least you guys are funny when you do it… just sayin’ though, if you haven’t read here before. Th1th2 has posted only 4 comments on this thread, none particularly trollish (just wrong). Yet about five people called him an idiot. So I can see why people might get that impression about this site in general, and I’ll say that we two certainly aren’t the only ones.

    Also add that his/her comments provided a really good opportunity for education (for lurkers). A heck of a lot of parents think they are injecting their kid with a disease. It just doesn’t feel right, if you don’t understand the science, to give your kid a shot of polio of whatever, especially when you have no personal experience with the disease. And then you have these facts versus these facts, people don’t know who to believe… and it seems to them that “sciencey” people are a lot snottier/holier than thou.

    Believe me, I’ve reflected on this with regard to my absolute disdain of religion. Not that I don’t appreciate some snark sometimes still.

  85. Chris says:

    Hey! I actually answered with something that somewhat agreed with him! (The OPV did cause polio, which is why developed countries now use IPV)

    I did not call him an idiot here.

    I have called him a liar on another thread where he posted within a few hours that he actually administered vaccines and then claimed that they went directly into the bloodstream! Um, yeah. There seems to be a disconnect of reality in those two statements.

  86. Th1Th2 says:

    Chris,

    There is no hope for you. It is a shame that not even one medical expert in this so-called “opinion-based” board can even support to defend your stance.

  87. BillyJoe says:

    Thimple1Thimple2

    I’m going to let you have the last word.
    No, really.
    If you post below this space, no matter what you say, I promise not to respond.

    In fact, I promise not even to read it.

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