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485 thoughts on “Reflexive doubt

  1. 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.

  2. Harriet Hall says:

    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.

  3. Scottynuke says:

    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.

  4. Danio says:

    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.

  5. Zoe237 says:

    “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.

  6. Zoe237 says:

    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.”

  7. lizkat says:

    “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.

  8. lizkat says:

    “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.

  9. lizkat says:

    “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.

  10. Zoe237 says:

    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.

  11. squirrelelite says:

    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.

  12. Fifi says:

    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.

  13. squirrelelite says:

    Correction, that should have been “write”, not “right”.

  14. Harriet Hall says:

    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.

  15. Zoe237 says:

    “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.

  16. Lawrence C. says:

    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.

  17. Harriet Hall says:

    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.

  18. Harriet Hall says:

    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.

  19. Plonit says:

    It is propaganda.

    ++++++++++

    O….kay. And what about the papers they link to? Also propaganda?

  20. Plonit says:

    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.

  21. David Gorski says:

    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.

    Then you haven’t looked very hard.

  22. lizkat says:

    “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.

  23. lizkat says:

    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.

  24. lizkat says:

    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.

  25. Plonit says:

    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.

  26. “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.

  27. lizkat says:

    “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.

  28. 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.

  29. Plonit says:

    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.

  30. lizkat says:

    “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.

  31. Plonit says:

    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.

  32. Plonit says:

    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*

  33. weing says:

    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.

  34. Harriet Hall says:

    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.

  35. lizkat says:

    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.

  36. Harriet Hall says:

    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!

  37. weing says:

    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.

  38. weing says:

    BTW you are the one erecting the straw man of a cure for AIDS. There is no such thing, yet. There is only treatment.

  39. lizkat says:

    “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.

  40. lizkat says:

    “when AIDS was first described, the patients very quickly died.”

    So how come the HIV latency period was supposedly 10 years or more?

  41. lizkat says:

    ” 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.

  42. weing says:

    See what I mean? I am talking about patients that meet the old definition of AIDS. HIV infection is not AIDS.

  43. weing says:

    If you want to start someplace. Find out what the diagnostic criteria are for AIDS.

  44. lizkat says:

    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.

  45. squirrelelite says:

    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.

  46. lizkat says:

    “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.

  47. pmoran says:

    “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.

  48. Plonit says:

    The first anti-HIV/AIDS drugs were available in 1987, that’s more than twenty years ago. Combination therapies were not that far behind.

  49. squirrelelite says:

    If you multiply those three improvements, using a three drug combination of antiretrovirals is 155% better than a placebo!

  50. lizkat says:

    * 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.

  51. lizkat says:

    “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.

  52. lizkat says:

    “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.

  53. Plonit says:

    I have not been able to find any though.

    ++++++++++

    Then you have not been looking!

  54. weing says:

    “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.

  55. lizkat says:

    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.

  56. lizkat says:

    “Then you have not been looking!”

    I have been looking! And no one here provides helpful clues!

  57. weing says:

    lizkat,

    Many of my patients would not be alive today if it wasn’t for the products of those horrid drug companies.

  58. weing says:

    “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.

  59. Plonit says:

    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?

  60. Plonit says:

    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.

  61. Plonit says:

    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”

  62. Gabriel says:

    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

  63. Dave Ruddell says:

    …any more than we could do a placebo-controlled parachute test.

    Oh, I am so stealing that line!

  64. Zoe237 says:

    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.

  65. Plonit says:

    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?

  66. BillyJoe says:

    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.

  67. 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?

  68. Fifi says:

    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/

  69. Fifi says:

    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.”

  70. Plonit says:

    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

  71. Fifi says:

    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!

  72. 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.

  73. 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.

  74. weing says:

    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.

  75. micheleinmichigan says:

    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.

  76. lizkat says:

    ” 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.

  77. lizkat says:

    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.

  78. lizkat says:

    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.

  79. lizkat says:

    “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.

  80. lizkat says:

    “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.

  81. micheleinmichigan says:

    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?

  82. weing says:

    “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.

  83. lizkat says:

    “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?

  84. Plonit says:

    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?

  85. micheleinmichigan says:

    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.

  86. lizkat says:

    “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.

  87. micheleinmichigan says:

    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.

  88. Plonit says:

    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.

  89. Fifi says:

    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).

  90. Fifi says:

    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.

  91. Fifi says:

    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).

  92. “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.

  93. 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?

  94. Fifi says:

    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).

  95. Fifi says:

    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.

  96. EricG says:

    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!

  97. lizkat says:

    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.

  98. “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.

  99. 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.

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