Thursday, December 22, 2005

What should they have known and when should they have known it?

One of the recurring themes in the wacky world of "alternative" medicine (and "alternative" biology) is the use of "authorities" as unimpeachable sources of information. As far as I can tell, the irony of their behavior is completely lost on the "alternative" medicine crowd, most of whom will rant long and loud about not trusting doctors, scientists, "the government", "Big Pharma", the AMA, the CDC, the FDA.... you get the picture.

Yet, despite this stated (and restated and restated...) aversion to "authorities", they seem perfectly willing to suspend their suspicions and disbelief when someone in a position of authority on their side (e.g. a journalist, like David Kirby) tells them something. Granted, many of these "authorities" are telling them not to trust doctors, scientists, "the government", etc., which is exactly what many of the "alternative" medicine crowd already fervently believe.

Where it all gets a little strange is when the "authority" is a doctor - the "real" MD/DO kind, not one of physician wanna-bes, like chiropractors, naturopaths, homeopaths and whateveropaths. These people are trusted - I assume - because they have broken from the herd, turned their back on "entrenched dogma" (a phrase I borrowed from a Post-Modernist lecture I attended) and have joined the forces of enlightenment and....well, you get the idea.

Seeing how some people have turned these "renegade" physicians (e.g. Joseph Mercola [also see here], Jeff Bradstreet, Andrew Wakefield, Rashid Buttar, Andrew Weil and Deepak Chopra) into saints (occasionally martyrs), gurus and even saviours has left me wondering. Clearly, these physicians have tapped into a unmet need in the people they....... I suppose the polite term would be "treat". This is fascinating in its own right, but should be dealt with by someone with greater knowledge of the human psyche. What I'm interested in is the following:

These people have all had a scientific education - with at least a passing familiarity with scientific method - and should know that what they are saying is, at best, untested and, at worst, known to be false.

So, we come to the title of this posting. There is, I am told, a provision in law that holds a person liable for false statements if they knew or should have known that the statement is false. Now, I'm not a lawyer and I have no pretensions about my legal knowledge, but it seems to me - humble biologist that I am - that there is at least a moral responsibility (if not a legal liability) for making authoritative, emphatic statements that you either know or should know - because of your education and training - aren't well supported (or are, in fact, disproven) by the data.

One of the reasons that "alternative" medicine and "pseudoscience" appeal to the "average person" (i.e. people with little or no formal education in the sciences) is that they offer simple (some might say simplistic) answers to difficult and complex questions. People who find science intimidating and impenetrable (i.e. most of the population) want a simple answer to their questions. They don't like long, complicated answers riddled with probabilities and conflicting or ambiguous data. And they especially don't want to be told that nobody knows the answer yet. Regretably, most simple answers to complex questions are also wrong.

If you ask one of these "renegades" how to slow (or even stop!) aging, what causes autism or how to "cure what ails ye", they almost always have very concrete, definite anwers. Many of them will also sell you the goods you need to carry out their advice. What they won't tell you is that they have no data - other than their own "clinical experience" - to support what they say.

If what these "renegades" were doing (or advising you to do) was the "norm" in the medical community, then you would be at least no worse off for following advice that had not been scientifically tested. Quite a bit of medicine - even today - is based on the collective "clinical experience" of thousands of physicians. Periodically, one of these practices gets picked off by a scientific study, in which case the medical community adopts a new "norm".

However, if your physician is one of the "renegades", you have no such reassurance. Occasionally, the lone maverick who stands alone and refuses to follow the herd is the vanguard of a new breakthrough in medicine (or science). Most often, however, they are simply wandering aimlessly off the trail and into the wilderness. Taking you with them.

However, if asked, most (if not all) of these "renegade" physicians will tell you that the treatments they recommend are both safe and effective - they have seen them work on dozens/hundreds/thousands of patients. If pressed, they will often offer up pages of glowing testimonials. They may even be able to tell you about a well-respected physician in New York/Europe/Asia who has done a large study showing how well it works - although they usually can't cite a literature reference. These sorts of studies are often (lamentably) unpublished, owing to the dastardly machination of "Big Pharma" and the AMA.

Yet, at some level, these physicians must know that they are working outside of the realm of science. Some of them - Weil and Chopra spring to mind - don't care. Others - such as Bradstreet - have apparently convinced themselves that their own clinical experience is a sufficient substitute. But they all should know better.



Prometheus


Note: Prometheus will be spending the next week communing with the waves and absorbing photons. Feel free to post comments, but don't expect a quick response - this will be a decidedly low-tech trip.

Monday, December 19, 2005

Lost on the Moral Compass Course

After finishing my last post ("Collective Amnesia"), I spent a little time contemplating the issue of "conflict of interest".

Conflict of interest is something that the supporters of various "alternative" autism hypotheses throw around a lot. They use it to explain why studies fail to show a connection between thimerosal and autism. They use it to explain why we should pay no attention to the dozens of excellent scientists and doctors who say that there is no connection. They use it to explain why nobody is doing research that finds a connection between mercury and autism.

But they don't use it to explain why many of the people on their "side" are doing what they do.

While looking through the material for my last post, I stumbled across the fact that Dr. Bernard Rimland was one of the people who patented the use of secretin in any form to treat autism. That patent was then sold to the Repligen Corporation, which then began testing (recombinant) secretin as a treatment for autism. Dr. Rimland (and the other owner of the patent) donated the Repligen stock to the Autism Research Institute (ARI) - which is run by Dr. Rimland.

When Repligen decided - in January of 2004 - to stop the secretin study because of unfavorable preliminary results, Dr. Rimland published a letter to the CEO of Repligen in the ARI newsletter, Autism Research Review International. This letter included the following statement:

"We have gotten, and continue to get, communications from upset parents and physicians, many of whom are Repligen stockholders."

The following graph of Repligen's stock price may help illuminate at least some of the cause of the upset: (stock chart). The stock price had gone over $8 in October of 2003 but was down to around $4 in late December. The precipitous drop (to about $2.50) in January 2004 was probably linked to the news that their promised blockbuster was a non-starter.

Now, I'm sure that Dr. Rimland had many other reasons besides stock values to be upset about the end of the study, but don't you think that it would have been ethical to at least mention that ARI was a major stockholder in the company? That might have informed readers that there was a potential conflict of interest involved in Dr. Rimland's letter and editorial.

Instead, Dr. Rimland mentioned that many of the parents and physicians who had communicated with him were stockholders and completely ommitted any mention of ARI's role as a major stockholder.

Other conflicts of interest abound in the "alternative" autism world.

Geier and Geier - famous for their ability to glean definitive information from a corrupted database - make their money doing "expert witness" work for parents suing (or trying to sue) over alleged vaccine injury. Besides other ethical issues that they might have (see here), it is clear that they have a financial stake (i.e. a conflict of interest) in finding that vaccines - or a component of vaccines - cause autism (or other disorders that one can sue over).

The "alternative" autism conferences are filled with people who are providing "infomercials" about the "therapy" they are selling without explicitly disclosing this fact to the parents at these conferences.

For example - Boyd Haley lectures on how mercury causes autism and - coincidentally - is founder of a company that sells some "advanced" dental diagnostics and also promotes the idea that mercury (from dental amalgams and/or vaccines) causes a number of chronic conditions, including autism.

Given the incredible conflicts of interest seen among the "scientists" supporting both the autism-mercury and autism-vaccine hypotheses (granted, there is a significant overlap), I find it almost laughable that they accuse other people of conflict of interest. Almost, but not quite.

Clearly, the conflict of interest issue is just a red herring, since the very people making the accusation are untroubled by gross conflist of interest among people on "their" side. In fact, it seems more like a case of projection, where they accuse others of the very transgression that they, themselves, are repeatedly committing.

So, it seems that the leaders and "researchers" of the autism-mercury group have lost their moral compass (if, indeed, some of them ever had one).


Prometheus.

Sunday, December 11, 2005

Collective Amnesia...

A comment by HCN prompted me to look at the history of "alternative" autism treatments - what an eye-opener!

Now, the history of medicine is littered with the dessicated corpses of treatments that had been vigorously promoted but failed to live up to their promise. Some of these now-dead treatments had long and full lives before they were brought down and others had only a short time on the stage. A key feature in the eventual downfall of most (if not all) of these ex-treatments is that they were "killed" by the scientific method.

"Balancing the humors" had a good long run as a medical therapy, first formulated by Hiipocrates, Plato and Aristotle in the 4th and 5th centuries BCE and lasting (in some form) until well into the 16th century CE. Fortunately, it is now dead - although it sometimes pops up in various "alternative" medicine explanations. It was killed by the growing understanding of how the body actually operated.

More recently, we have (through scientific investigation) found that homeopathy is just water (or lactose) and that acupuncture "works" no matter where you stick the needle. And on the way, we have learned that the bleeding, purging and blistering of "heroic medicine" also don't work (and more often kill or injure). We've also learned that electroshock is not a useful treatment for homosexuality (although it does help depression) and that treating alcoholism with morphine and opiate addiction with cocaine is - at best - a short-lived solution.

In short, although there have always been some practitioners who have clung to the old ways, modern medicine (i.e. 20th and 21st century medicine) has been fairly quick to drop therapies that either don't work or that have been superceded by better or safer treatments. The same cannot be said of "alternative" medicine, which - almost by definition - refuses to reject any therapy except (ironically) those used by "mainstream" medicine.

Back to autism therapies.

On the advice of a reader, I went to Dr. Bernard Rimland's "Autism Research Institute" (ARI) website and found the following therapies recommended for the treatment of autism:

DMG (dimethly glycine, Betaine) - Among the benefits claimed for DMG are:

"For over 20 years ARI has been hearing from parents who have tried DMG on their autistic children. In many cases remarkably good results have been seen, especially in enhancing speech."

"Many parents have reported that, within a few days of starting DMG, the child's behavior improved noticeably, better eye contact was seen, frustration tolerance increased, the child's speech improved, or more interest and ability in speaking was observed."

"In some cases, drug-resistant seizures have been stopped by DMG. (See New England Journal of Medicine, 10-21-82, pgs 1081-82)." [also see Epilepsia. 1989 Jan-Feb;30(1):90-3, which found no effect]

"Many studies have shown that DMG enhances the effectiveness of the immune system, improves the physical and athletic performance of humans and other animals (e.g. race horses) and has, all in all, a very wide range of beneficial effects." [no references given]

A quick stroll through MedLine revealed that a few clinical trials (as opposed to parental anecdotes) have been completed on DMG. Their results:

[1] A study of 37 autistic children 3 - 11 years of age -

"...the quantitative changes in the dimethylglycine behavioral assessments were not significantly different from what was observed among children who received placebo."
Kern JK, Miller VS, Cauller PL, Kendall PR, Mehta PJ, Dodd M. Effectiveness of N,N-dimethyl-glycine in autism and pervasive developmental disorder. J Child Neurol. 2001 Mar;16(3):169-73.

[2] A pilot study of eight autistic people 4 -30 years old (small number, large age spread!) -

"Analysis of all three scales revealed no statistically significant differences, and parent reports were equally distributed."

Bolman WM, Richmond JA. A double-blind, placebo-controlled, crossover pilot trial of low dose dimethyl-glycine in patients with autistic disorder. J Autism Dev Disord. 1999 Jun;29. (3):191-4.

[3] A review of the performance-enhancing effects of DMG (NB - Pangamic acid is a combination of DMG and calcium gluconate):

"Multivariate analysis of variance (MANOVA) revealed no significant differences (P greater than 0.05) between groups after treatment. It was concluded that ingestion of pangamic acid does not produce significant changes in short-term maximal tread-mill performance."

Gray ME, Titlow LW. The effect of pangamic acid on maximal treadmill performance. Med Sci Sports Exerc. 1982;14(6):424-7.

[4] Finally, a claim that has been substantiated - in one study:

"A double-blind study in 20 human volunteers showed a fourfold increase in antibody response to pneumococcal vaccine in those receiving DMG orally as
compared with controls (P less than 0.01)."

"The in vitro responses of lymphocytes from patients with diabetes and those with sickle cell disease to phytohemagglutinin, convanavalin A, and pokeweed mitogen were increased almost threefold after addition of DMA [sic]. These results suggest that DMG enhances both humoral and cell-mediated immune responses in humans."

Graber CD, Goust JM, Glassman AD, Kendall R, Loadholt CB. Immunomodulating properties of dimethyl-glycine in humans. J Infect Dis. 1981 Jan;143(1):101-5.

This sounds like a great deal until one considers the many people claiming an autoimmune component to autism. Would increasing the immune response be such a good idea, if this is the case?


Vitamin B6 and Magnesium

This one goes 'way back - back to when Dr. Rimland was a contributor to Linus Pauling's book "Orthomolecular Psychiatry: Treatment of Schizophrenia". On the ARI website, the following claims are made about the therapy:

"All 18 studies known to me in which vitamin B6 has been evaluated as a treatment for autistic children have provided positive results. This is a rather remarkable record, since the many drugs that have been evaluated as treatments for autism have produced very inconsistent results." [this study must be the 19th study on B6 and magnesium]

A number of anecdotes are also relayed, although the results of Dr. Rimland's largest (and earliest that I can find) B6 and magnesium study are only briefly mentioned in passing. This study, which apparently involved over 200 autistic children, was mentioned in the book "Orthomolecular Psychiatry: Treatment of Schizophrenia" (Hawkins and Pauling, eds). Although I have not yet received a copy of the book (through the miracle of interlibrary loan), a previous reading of the chapter by Dr. Rimland disclosed to me a revealing aspect of the study.

Some of the children in this study were institutionalized and Dr. Rimland found that these children had a much lower improvement rate. Although he did not test for compliance (by testing the urine, as he did in later studies), Dr. Rimland's assumption was that the staff of the institutions were not being compliant because they didn't believe that the therapy would be effective.

Interestingly, my (extremely limited) experience with long-term care facilities (as institutions are now called) is that once a medication order is written, it will be carried out religiously - sometimes in the face of ample reason to stop giving it. I find it odd, therefore, to blame institutional non-compliance for the poor results in these children. An alternative hypothesis is that the staff of the institutions did not have a "stake" in the outcome and so were more objective.


Secretin

The secretin story is pretty much a classic for alternative medicine. The story begins in April 1996, when an autistic child underwent an endoscopy and received - as is routine - an injection of secretin to confirm the continuity of the pancreatic duct (it causes pancreatic juice to squirt out of the duct, which can easily be seen during endoscopy). Following this procedure, he demonstrated "remarkable" improvement in language and social skills. His mother, Victoria Beck, determined that the only medication he had received that could be responsible for this improvement was the secretin.

Ms. Beck not only wrote a book (Confronting Autism) on the subject of secretin and autism, she (and Dr. Rimland) patented the treatment. This patent was subsequently sold to the Repligen corporation, which proceeded to make secretin (human secretin, using recombinant technology) and test it on autistic children.

Interestingly, part of the sale included Repligen stock - Ms. Beck reportedly donated her portion to the Autism Research Institute (run by Dr. Rimland out of his home), as did Dr. Rimland. So the Autism Research Institute has a financial interest in making secretin "work" for autism, since that product promised to be Repligen's biggest seller.

This story "broke" in early October 1998, after appearances by Ms. Beck on "Dateline" and "Good Morning America". The demand was so great that the one company making secretin - Ferring - was sold out by October 16th. In late 1998, Dr. Rimland recorded in the ARI Newsletter that:

"The good news is that confirmatory evidence of the power of secretin keeps coming. A national newspaper told of Florida pediatrician Jeff Bradstreet's own four-year-old son, Matthew, shocking his parents by holding his first normal conversation with them the day after his first secretin infusion. And Virginia pediatrician Lawrence Leichtman told me of his 'miracle case:' a five-year-old who had previously said only two words amazed all in the office by saying, 15 minutes after his infusion, 'I am hungry. I want to eat.' Most cases are much less dramatic, but the autism world is excited, and for good reason."

Many of the initial clinical studies on secretin were promising, but only small numbers of patients were treated in these studies. The clouds began to gather when larger, more rigorous studies were done, including Repligen's own studies to earn an FDA-approved indication for autism.

One of the first "bad news" studies was the following:

Lack of Benefit of a Single Dose of Synthetic Human Secretin in the Treatment of Autism and Pervasive Developmental Disorder. Adrian D. Sandler, M.D., Kelly A. Sutton, M.A., Jeffrey DeWeese, B.S., Mary Alice Girardi, P.N.P., Victoria Sheppard, M.D., and James W. Bodfish, Ph.D. N Engl J Med. 1999 Dec 9;341 (24):1801-6.

This study looked at 60 autistic children and found:

"As compared with placebo, secretin treatment was not associated with significant improvements in any of the outcome measures. "

and

"After they were told the results, 69 percent of the parents of the children in this study said they remained interested in secretin as a treatment for their children. "

The last quote forshadowed the events to come.

Dr. Rimland responded quickly to this first setback with an article in the ARI Newsletter titled: "Secretin: positive, negative reports in the 'top of the first inning' ". But the bad news just kept coming.

[April 200] - "Results of both inquiries indicate that although treatment with secretin was reported to cause transient changes in speech and behavior in some children, overall it produced few clinically meaningful changes when compared to children given placebo injections."

Secretin and autism: a two-part clinical investigation.Chez MG, Buchanan CP, Bagan BT, Hammer MS, McCarthy KS, Ovrutskaya I, Nowinski CV, Cohen ZS. J Autism Dev Disord. 2000 Apr;30(2):87-94

[May 2001] - "A single dose of intravenous secretin does not appear to have significant effects on either parents' perception of autistic behaviors or language skills at 6 weeks after injection. Transient, marginally significant improvements in autistic behaviors may occur in some children."

A randomized, double-blind, placebo-controlled trial of single-dose intravenous secretin as treatment for children with autism. Coniglio SJ, Lewis JD, Lang C, Burns TG, Subhani-Siddique R, Weintraub A, Schub H, Holden EW. J Pediatr. 2001 May;138(5):649-55

[May 2001] - "No evidence is provided for the efficacy of repeated doses of porcine secretin in the treatment of children with autism."

Repeated doses of porcine secretin in the treatment of autism: a randomized, placebo-controlled trial. Roberts W, Weaver L, Brian J, Bryson S, Emelianova S, Griffiths AM, MacKinnon B, Yim C, Wolpin J, Koren G. Pediatrics. 2001 May;107(5):E71

[November 2001] - "There was no evidence for efficacy of secretin in this randomized, placebo-controlled, double-blind trial."

Multisite, double-blind, placebo-controlled trial of porcine secretin in autism. Owley T, McMahon W, Cook EH, Laulhere T, South M, Mays LZ, Shernoff ES, Lainhart J, Modahl CB, Corsello C, Ozonoff S, Risi S, Lord C, Leventhal BL, Filipek PA. J Am Acad Child Adolesc Psychiatry. 2001 Nov;40(11):1293-9.

[November 2002] - "No evidence that either biologic or synthetic secretin provided amelioration of symptoms beyond placebo was observed. This held true when children with and without gastrointestinal problems were examined separately."

A randomized, double-blind, placebo-controlled trial of porcine versus synthetic secretin for reducing symptoms of autism. Unis AS, Munson JA, Rogers SJ, Goldson E, Osterling J, Gabriels R, Abbott RD, Dawson G. J Am Acad Child Adolesc Psychiatry. 2002 Nov;41(11):1315-21

[December 2002] - "The results of this study do not support secretin as a treatment for autism."

Lack of benefit of intravenous synthetic human secretin in the treatment of autism. Molloy CA, Manning-Courtney P, Swayne S, Bean J, Brown JM, Murray DS, Kinsman AM, Brasington M, Ulrich CD 2nd. J Autism Dev Disord. 2002 Dec;32(6):545-51.

[August 2003] - "In a controlled setting, parents of young children with autism are unable to distinguish the short term behavioural effects of secretin from placebo."

Children with autistic spectrum disorders. II: parents are unable to distinguish secretin from placebo under double-blind conditions. Coplan J, Souders MC, Mulberg AE, Belchic JK, Wray J, Jawad AF, Gallagher PR, Mitchell R, Gerdes M, Levy SE. Arch Dis Child. 2003 Aug;88(8):737-9.

In 2004, the Repligen Corporation - partway through a Phase III study of secretin for autism - threw in the towel because the initial results were unfavorable. This should have been the end of it...but it wasn't. For full details, read Dr. Rimland's impassioned letter to the CEO of Repligen. The Autism Reseach Institute still claims that secretin is an effective treamtment for autism.

And don't miss Dr. Rimland's complaints about the double-blind, placebo-controlled method.

Conclusion

After reading all this, I was left to wonder how parents can continue to listen to the recommendation of people like this (and ARI is far more scientific and reasoned than some of the others). Of course, much of the reason is that the parents don't know the history of some of these treatments - they only know what the organizations like DAN! (tied with ARI) tell them unless people like me can get to them.

The practitioners who follow these therapies are the ones I have the most concern for (and about). The parents have only been exposed to this for a relatively short time, while the practitioners must have seen some of these therapies rise and fall. They must either have a severe memory disorder or be able to tolerate near-fatal amounts of cognitive dissonance. Either way, I think that there is a problem.


Prometheus

Monday, December 05, 2005

"I'll stop being paranoid when They stop following me!"

As a somewhat tangential sequel to the last posting, I'd like to spend a few moments discussing the old/new phenomenon of conspiracy theories, particularly as they apply to "alternative" medicine.

I imagine that the old canard, "The doctors (or "Big Pharma" or the government or...) don't want people to know how [fill in quack remedy] can cure [fill in disorder]!" probably goes back to the days of Hippocrates himself. In fact, he may have used it. But, be it ancient or merely old and hoary, the Internet is crawling with people who claim that their "cure" is being suppressed by "the establishment".

One classic example is Kevin Trudeau, whose book "Natural Cures 'They' Don't Want You to Know About" has allegedly sold over a million copies. Of course, he substantiates his claim that "they" are trying to keep these "cures" secret by his own run-ins with the authorities (see here, here and here). How ingenious of "Big Pharma", the FDA and AMA to have him arrested for credit card fraud before he started writing his book on natural "cures"!

Yet, people keep buying this line of luncheon meat (baloney). There are apparently nearly a million people (I doubt that all those copies of his book were purchased by libraries) who think that Mr. Trudeau is telling the truth, despite that ugly business about the credit cards. And, of course, there is the other big unanswered question:

If "They" don't want you to know about his "cures", how did Mr. Trudeau sell a million books?


Apparently "They" aren't as powerful as Mr. Trudeau would like us to think. And Mr. Trudeau is not the only person in the "alternative" medicine "biz" claiming that "organized medicine" (the AMA?), pharmaceutical companies ("Big Pharma") and the "government" (USFDA, CDC, IOM...) are involved in an active conspiracy to "hide the truth" about any number of health-related issues, ranging from thimerosal and autism to the amount of vitamins that are truly necessary for healthy living.

On the face of it, these claims are simply ridiculous, as anyone who has ever been told a secret should know. The "half-life" of a secret is inversely proportional to the number of people who know it and the amount of money/fame/press coverage a person would receive for revealing it. Given the thousands of people who would have to be in on the "secret" in most of these cases - and the amount of press interest such a secret (if it existed) would generate - the half-life of these "secrets" would be only as long as it took one disgruntled employee with a grudge to dial the phone.

What it all comes down to is this - the only way to keep a large conspiracy intact is to for the members to fear being killed (or worse) if they talk. This is how the Mafia and totalitarian governments manage to keep secrets so well. And for those who claim that the governments of the US, UK and the rest of the world operate that way, here is one simple question:

Why is Kevin Trudeau still breathing?

You see, a conspiracy that would be willing to kill its own members wouldn't scruple at killing authors, web-site owners, bloggers or anyone else who threatened their security. If the governments and/or non-governmental organizations involved in these so-called "conspiracies" were that ruthless, there would be a lot fewer websites on the Internet. The conspiracy theorists' continued life is their biggest obstacle to believability. If they were right, then either someone inside the "conspiracy" would have already talked or the conspiracy theorists would be dead.

Seems pretty simple to me.

Still, the conspiracy theorists continue to breathe and continue to make their bizarre accusations. And why are they so often believed? Well, at least part of it is the innate distrust of government that grew out of the 1960's protest movements and was fueled by the numerous untrustworthy things that governments did, do and will probably always do in the future. In short, it is not only popular to distrust government, it is probably also wise.

Having said that, it is important to make a distinction between not trusting and being...well, paranoid. For example, I would not trust a random stranger on the street to hold my purse or wallet for an hour - that is a matter of trust. However, I would not expect a random stranger to be part of a conspiracy to kill me - that would be paranoia.

To bring that example forward to the present issue, I do not trust my government to tell me the truth or act in my best interests at all times - in fact, I think that it acts in my best interest only when my interests and those of the government happen to happily coincide. On the other hand, I don't expect the government to be any more efficient at keeping secrets than it is at delivering the mail, building roads or delivering health care. Which gives me a great deal of comfort, I must tell you.

So, in the absence of any evidence to the contrary, I will decline to join the tin-foil (or, more precisely, the aluminium-foil) hat crowd and will not be scrutinizing government documents looking for coded messages or inadvertent "slips". Those of you who do, you have my sympathy.


Prometheus.

Friday, December 02, 2005

The Lyin' in Winter

(With apologies to Henry II and Eleanor of Aquitaine)

After a few months of blogging and running into supporters of the autism-mercury hypothesis, I have begun to notice that there is a fundamental difference between their approach to the issue and mine (OK, so I'm slow on the uptake). I'm not referring to the positions that we have taken - which are essentially polar opposites - but to the methods and attitudes we bring to the discussion.

Reading back over some comments on this and other blogs, I see a pattern emerging. There are nasty language, ad hominem attacks and exasperation coming from both sides of the issue, but autism-mercury advocates are far more likely to resort to accusations of:

[1] Lying
[2] Conspiracy (a form of lying)
[3] Cover-up (another form of lying)
[4] Bias/Conflict of Interest (leading to - you guessed it - lying!)

These accusations are not only leveled at "the government", the pharmaceutical industry ("Big Pharma") and doctors, they are hurled at anyone - blogger, commenter or hapless bystander - who disagrees with them.

On the other hand, I have rarely seen someone on the "opposing side" accuse one of the autism-mercury proponents of lying in any of its myriad forms. Those times that I have, it has been to accuse some of the "alt-med" practitioners and researchers favored by the autism-mercury supporters of deliberately deceiving their clientele. I have yet to see someone accuse an autism-mercury proponent of "lying" about their beliefs. Granted, I have seen people rather rudely accuse autism-mercury proponents of being willfully stupid, but not of deliberate falsehood.

So, why do I focus in on these accusations of lying? It's because they are so clearly false that even the accusers must know - at some level - that they are false. The people making these accusations cannot really believe that so many people are telling the same lie. And yet they continue to accuse people of lying - not just once or twice but several times in quick succession.

Now, a disagreement over interpretation of the data is one thing - even reasonable, intelligent people can disagree on how to interpret data. I happen to know of people who believe that the earth is flat - I disagree with them, but I don't think that they're lying.

So why would the autism-mercury advocates repeatedly accuse others of lying? For some of them, the fact that other people don't agree with them is just too threatening - their need to believe in the autism-mercury connection is too desperate to tolerate any questioning. Rather than acknowledge that there might be an explanation other than their own, they assume that anybody who disagrees with them is lying.

Others are simply incapable of imagining that anyone could come to a conclusion other than their own. Interestingly, this is very similar to the "theory of mind" dysfunction that is often (and perhaps inaccurately) attributed to autistic people. Unable to imagine how reasonable people could disagree with them, the only remaining explanation for them is that everyone who disagrees is lying.

Finally, some of the people accusing their opponents of lying are doing so in order to move the discussion out of the realm of ideas (where they are usually losing) and into the realm of emotion. And the emotion they are trying to evoke is hate.

Hate allows people to ignore the arguments - or even the essential humanity - of their opponent. You can't hate someone that you're having a difference of opinion with. You can hate someone who is trying to oppose you with lies, however. Hate requires a belly full of righteous indignation, a sense of outrage, a sense of being wronged.

The hate-mongers in this debate are trying to frame it in such a way as to inflame people's sense of outrage - to make them feel threatened, wronged or victimised. Here are just a few examples out of my nearly six-month sojourn:

[1] "You're trying to keep me from curing my child!" Not true, since nobody in this debate currently has that sort of power - and those making the accusation know that.

[2] "You're trying to keep the information away from parents who need it!" Also obviously false, since the Internet, books, pamphlets and other media are full of that information. If anything, it is the autism-mercury proponents are trying to suppress information contrary to their point of view.

[3] "You're lying to protect the government/Big Pharma/the doctors!" While this cannot be discounted out of hand, it would imply a conspiracy of such immense scope and scale that it would be impossible to resist - and yet the accusers themselves manage to resist it.

[4] "You're calling me a liar!" Rarely true - more often used after being told that they are wrong, mistaken or that they haven't proven their point. It escalates the situation from a disussion of the facts to a personal affront - leading to hate.

Why do people want to inject hate into the debate? Quite simply, hate and anger are a form of emotional energy that can be used to unite people who might otherwise barely speak to each other. In addition, hate has a way of clouding the issue, of keeping people from asking the important questions - like, "OK, so you say that the other folks are lying - why should I believe you?"

Look back through human history - as far back as the Greek city-states or as recently as yesterday's newspaper - and you will see countless examples of leaders fomenting hatred of some group or another in order to keep their followers' attention off their own shortcomings. And the autism-mercury organization has plenty of shortcomings!

By whipping up the hate of the parents - and throwing stones at anyone who disagrees with them - the leaders of the autism-mercury movement manage to keep their followers from noticing that their own house is made of glass. Here are but a few of the shortcomings that the autism-mercury folks want to keep from their followers:

[1] The data keeps coming in against a mercury-autism connection. You can ignore a couple of studies - or even explain them away as "flawed" or "biased" - but it gets harder with each additional one.

[2] The people publishing (or, more often, promoting and not publishing) data supporting the mercury-autism connection have a greater conflict of interest than any they can dream up about the scientists publishing data not supporting the connection.

[3] The number of people who would have to be members of the "conspiracy" to "cover up" the mercury-autism connection is expanding at an exponential rate. It will soon need to encompass nearly everyone on the planet to remain a workable "theory". As a general rule, conspiracy theories tend to collapse under their own weight, and this one is at the point of collapse.

[4] Many of the people promoting the mercury-autism connection are using tactics that are not only unsound, but are morally and ethically repugnant. Harrassment, intimidation, name-calling and "dirty tricks" (ala Richard Nixon) are not the way to convince people. They are exactly what they appear to be - attempts to silence the opposition without having to address the issues they raise.

Funny thing about whipping up hate - it is like a fire; always needing something more to burn. It is a powerful tool but a cruel master - and it usually ends up mastering those who try to use it. Eventually, the hate-mongers end up being eaten by the very thing they created.



Prometheus