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.

24 Comments:

Blogger Michael said...

The blinding force of ego is unfortunately a very powerful motivator.

Regards,
Michael Tam
vitualis' Medical Rants

23 December, 2005 06:06  
Anonymous Anonymous said...

"Others - such as Bradstreet - have apparently convinced themselves that their own clinical experience is a sufficient substitute.

Bradstreet will look you in the eye and tell you that ~20% of his patients will fully recover from autism and a much higher percentage show dramatic improvements. If there are scientists in the room he may offer that very caveat. "Of course this is only my clinical experience"

If there are desperate parents in the room some of the credit will go to God.

23 December, 2005 06:56  
Blogger Bartholomew Cubbins said...

The same God that gave the child autism as a test of the parents' faith. It's not for us to understand. Maybe this guy could help.

I have to wonder, do those who are religious and believe doctors poisoned their children believe the act was a test of their faith too?

/threadjack

23 December, 2005 08:09  
Blogger Prometheus said...

I have also read Dr. Bradstreet's various presentations and writings wherein he claims various percentages of "cure" and "dramatic improvement". What always seems to be left out are his criteria for "cure" and "dramatic improvement".

If you set the bar low enough, all autistic children will either show "dramatic improvement" or be "cured", simply because they are getting older. Autism is a syndrome of developmental delay, not stasis.

Bradstreet is at least being more cagey about his stats than certain others - one of whom was recorded saying that she has treated "over 600" autistic children with chelation and seen "significant improvement" in all of them. It beggars the imagination to believe that out of 600 children with the rather nebulous diagnosis of "autism" that at least a small percentage of them were not mistaken diagnoses.

To Master Cubbins - I can relate an experience of my own. When one of my children was taken seriously ill, a well-meaning hospital chaplain told us that "God never gives you more than you can handle." My response to this was, "So, if I had been less competent, my child would not be sick?"


Prometheus

23 December, 2005 09:56  
Blogger clone3g said...

Is that the same God who created the measles virus and then instructed Bradstreet to publish a paper where he claims to have found God's measles virus in CSF drawn from a handful of God's autistic children? Wouldn't God provide Jeff with up to date PCR tools so he could be more honest about his data?
I guess God works in mysterious ways!

23 December, 2005 11:06  
Anonymous Vera said...

Bradstreet and friends will get theirs.

"Many will say to me in that day, 'Lord, Lord, did we not prophesy in your name, and expel demons in your name, and perform many powerful works in your name?' And yet then I will confess to them: I never knew you! Get away from me, you workers of lawlessness." -Jesus in Matthew 7.

Sorry, Prometheus, I know you don't believe in the Bible, but I thought this fit.

23 December, 2005 14:22  
Anonymous Anonymous said...

Aside listed "renegade" physicians - the name Michael Goldberg, MD could well be added.

28 December, 2005 08:10  
Anonymous Anonymous said...

You group together physicians who are not at all alike, and who shouldn't be in the same sentence. I'm sorry, but the highly respected Dr. Andrew Weil, who made the cover of Time magazine, should not be in the same category as Buttar. Andrew Weil's concepts are based on common sense nutrition which is at the root of good health. Conventional docs don't even touch the importance of nutrition, much to the disatisfaction of patients who keep getting ill eating processed junk food and taking meds to counteract the bad food choices. Buttar, on the other hand, is off in his own world with the whole mercury quackery, something which could potentially harm people. Dr. Weil's intent is to help people with common sense nutrition.

30 December, 2005 14:12  
Anonymous Anonymous said...

P.S. Aren't you more worried about renegades who aren't M.D.s like Kevin Trudeau?

30 December, 2005 14:15  
Anonymous massmama said...

Weil has actually defended vaccine safety, if I recall correctly. I always thought he was a woo-woo, but that boosted his credibility for me.

30 December, 2005 18:16  
Blogger Prometheus said...

To Anonymous,

I worry about "renegades" like Mr. Trudeau about as much as I do about people who should know better, like Dr. Weil. I also try to not let any of them worry me too much.

While Dr. Weil does make a lot of "common sense" recommendations, he also makes a lot of "uncommon nonsense" ones. As for "conventional docs" not dealing with nutrition, all I can say is "nonsense". They simply don't expect it to cure disease (other than nutritional disorders).

My experience has been that doctors - even the "conventional" ones - advise their patients on proper nutrition. They just don't wait for their morbidly obese patients' blood pressure and diabetes to kill them before prescribing medication to mitigate the consequences of poor nutritional choices.

In my opinion - which is what trumps here on my blog - Dr. Weil's nonsense outweighs the small amount of good he does with his "sensible" recommendations. His appearance on the cover of Time magazine notwithstanding.


Prometheus.

01 January, 2006 00:35  
Blogger Bronze Dog said...

Conventional docs don't even touch the importance of nutrition...

Tell that to my doc: He once wrote me a "prescription" for Fiber One cereal.

03 January, 2006 06:10  
Anonymous Honest Parent said...

Parents working outside the realm of science are curing their autistic kids. Why don't quacks like you wake up and learn something from the parents? The first thing you should learn is to stop putting poison into children. The second thing is to stop lying to the parents about the poison the doctors negligently put into their babies. Third, shut up and stop displaying your ignorance.

04 January, 2006 15:31  
Blogger Prometheus said...

To "Honest Parent",

I'm always willing to learn. Perhaps you could answer a few questions.

[1] Why do you insist that people are "lying to parents"? Is it possible that these people are telling a truth that you don't want to hear? Or, if they are wrong, is it not possible that they - like you - believe that they are telling the truth but are simply mistaken? Why is it so important to believe that they are lying?

[2] Why does my freedom of expression threaten you? Does my scepticism make you feel less sure of your "truth"? If it does, shouldn't that make you question what you believe rather than reacting angrily at what I say? At any rate, I will not "shut up" simply because you want me to. You'll just have to get used to that.

[3] You call yourself "Honest" Parent. Is there some concern on your part that I believe that parents who feel that they are curing their children through questionable or worthless "therapies" are lying? If so, put your mind at ease - I don't think that they're lying, just wrong.

I've come to the point that whenever someone accuses someone of "lying", I automatically assume that they are unsure of their own "truths".

You should examine that small core of doubt rather than trying to deny that it exists. Doubt is often our subconscious showing us where we are making big mistakes.

If what I write makes you angry or uncomfortable, perhaps you should ask yourself why. People who are confident of their position would not be upset or angry at someone who disagrees with them. Only those who feel unsure about what they are saying get angry about dissent.

I won't go away - or, even if I do, there are many others like me. You can either deal with your anger or stay away - your choice.


Prometheus.

04 January, 2006 16:53  
Blogger Bartholomew Cubbins said...

Honest, check out the Lyin' in Winter and Paranoid posts (scroll down). You're right there, man.

I suppose I'm wasting ATP and electrons typing this.

04 January, 2006 20:30  
Blogger Bronze Dog said...

I think it should be noted that "Honest Parent" hasn't presented any data whatsoever. The silence is deafening, at least to me.

05 January, 2006 05:36  
Anonymous pvandck said...

"Parents working outside the realm of science are curing their autistic kids."
Scuse I, but outside the realm of science is what we call "in the realm of mumbo jumbo".
As an aside, I'm a parent whose child has ocular motor apraxia. He was diagnosed at 3 months. It's a pretty rare neurological disorder that affects the movement of the eyes. Most General Practitioners have never seen a single case. It isn't understood what (if anything) causes it. It is recognised well enough in order to diagnose it but there is no cure, therapy or intervention available to alleviate the condition. Generally speaking, when it occurs without any associated condition (such as cerebral palsy) it seems the sufferer learns to live with it and can lead a pretty normal life. But to see how ignorance and panic abound, a visit to the Ocular Motor Apraxia forum http://wwweb.org/oma/ might be enlightening. It's not difficult to see people's ignorance and desperation, and how they might be exploited by other "well-meaning" ignoramuses and not so well-meaning quacks.

05 January, 2006 17:41  
Anonymous HCN said...

Dear "Honest Parent",

Who is the real liar? The pediatrician who gives you a pamphlet detailing all the risks associated with getting a vaccine (like this http://www.metrokc.gov/health/immunization/compare.htm )... or the Ear Nose and Throat doctor who pumped EDTA into a kid as a "treatment" for autism, which in fact killed the child?

See http://www.post-gazette.com/pg/06006/633541.stm .

06 January, 2006 09:43  
Anonymous Anonymous said...

Prometheus
Your freedom of expression doesn't threaten me in the least. The problem I have with your misguided opinions is that those who have not spent years learning the truth about mercury and have a newly diagnosed autistic child might pay any attention to your nonsense. No rational person can read everything involved with thimerosal and autism and reach the conclusion that thimerosal is blameless. That is why I think it appropriate to call you a liar.
Why would Bill Frist have to sneak his legislation into bills late at night to protect the drug industry who poison babies if their claims about thimerosal were true?
You say parents are wrong when they claim they've cured their kids with therapies that you call useless but I don't see you coming up with another reason that the kids are, in fact, cured. So, you are, in effect, calling them liars. Would you have us believe that the kids just outgrew their autism in spite of the fact that the traditional treatment of using the schools to "treat" autism has never cured anyone? Why don't you explain why the Medical profession thinks it's proper to pawn autism off on teachers to deal with? Why do consider chelation a sham when you are taught in Med school to treat mercury poisoning with chelation? You can meet cured children if you would like and look at home videos to see what they were like prior to chelation. Yet, you adamantly persist in calling it a worthless therapy. When will you see that your ridiculous claims have the potential to further harm mercury poisoned kids by keeping their parents from learning the truth and helping their children? That is why you should simply "SHUT UP".

13 January, 2006 08:14  
Blogger Prometheus said...

Anonymous,

Well, let me give a counterpoint to your argument:

[1] There is no data supporting your claim that mercury causes autism. This does not mean that mercury cannot cause autism, only that your claim is unsupported.

My purpose is to point out to parents and others who visit this blog that, despite loud and emphatic assertions that "mercury causes autism" or even, "autism is just mercury poisoning", there is no good data supporting that assertion and there is a lot of data that suggests that autism is not caused by mercury.

If "your side" were to be a bit more honest about their claims, then I would be able to spend more time writing about other things.

[2] Claims that children have been "cured" or "recovered" by chelation therapy are balanced by claims that autism has been "cured" or "recovered" using:

a] ABA
b] Secretin
c] Vitamin A
d] Gutathione

And the list goes on. Is it not possible that some children with autism simply show dramatic improvement on their own and that whatever treatment is being employed at the time of the "recovery" is given credit?

I'm not saying that parents are wrong or "lying" about their children getting better - although that may be a case of wishful thinking and maturation - I'm saying that they are wrong about what caused it.

[3] I will not be "shutting up" any time soon, so you might as well stop asking me to. In fact, I'm just stubborn enough that the more people tell me to "shut up", the more I'll dig into the ridiculous claims they are making.

[4] Move on.


Prometheus

13 January, 2006 10:20  
Anonymous Anonymous said...

The Geier's had data. Why do you suppose they now can't gain access to it? There is no good reason to keep them out if there is nothing to hide. I saw recently that China is now up to 5 million cases since they started using thimerosal laced vaccines in 1999. Perhaps you have a reason for this besides the absurd claim of "better diagnosis".
It's important for parents to learn how to help their kids now rather than waiting for all the doctors who injected the mercury into the babies to retire so the AMA and AAP can admit that they screwed up when nobody is still practicing that made the mistake.

13 January, 2006 13:30  
Blogger Prometheus said...

Anonymous,

[1] What the Geier's have is baloney data from the VAERS database. Take a look at http://photoninthedarkness.blogspot.com/2005/07/dumpster-diving-republished.html .

The data they can no longer gain access to is the Vaccine Datalink, which barred them after they tried to sneak out data that would have violated patient confidentiality (see: http://www.casewatch.org/fdawarning/rsch/geier.shtml).

As a researcher, I can see no reason why I would need to know the names of the people in the database - but a person who makes their living as an expert witness in vaccine injury lawsuits might.

[2] I assume that you have a source for your data on Chinese autism cases - would you mind sharing it? And before you reply, the source should be traceable - meaning that they should give details about how they got the numbers.

[3] I think that it's important for parents to know how flimsy the data supporting your assertions are so that they can make decisions based on the best available information.

Perhaps the best solution is to put the information from both "sides" out for the parents to see and let them make the decision themselves. Or don't you trust parents to make the right choice? I do.

As I see it, you've got the certainty of your faith in the people telling you that chelation "works" for autism on your side, and I've got the majority of the data on my side. Personally, I like my side a whole lot better.

If you enjoy beating your head on this wall, by all means continue. But you might be happier on one of the autism-mercury blogs.


Prometheus

13 January, 2006 20:58  
Anonymous Anonymous said...

It ain't faith that's telling me chelation works, it's observation. What data do you have that shows chelation does not work? I don't need any data to advise me that it's working on my son. All I need is memory to remember how much worse off he was before starting to chelate.
Why do you like your side a whole lot better? Are you against helping poisoned children? Are you heavily invested in drug companies? Do you just enjoy seeing children suffer?

14 January, 2006 02:06  
Blogger Prometheus said...

Anonymous,

Observation, especially in an N=1 sort of "study" as watching your own child, is not infallible. In fact, it's highly error-prone. That's why real researchers do studies in a blinded fashion - so that they can neutralize their own expectations and unconscious biases.

If you don't understand that, it's no reflection on your intelligence or integrity, but it does show that you are unfamiliar with how science works. In fact, many of the things you've written on this blog have been glaring evidence of your unfamiliarity with scientific method. And, if you don't understand the method of science, you are very susceptible to being taken in by the practitioners of quackery and pseudoscience.

As I said, that's no reflection on you - the majority of the population is in that boat. That's how doctors like Rashid Buttar - who probably doesn't "get" scientific method either - are able to do what they do. If everyone - or even a large minority - of people understood the fallibility of unblinded observation, regression to the mean, neuromaturation, etc., then Buttar and the rest would have been laughed out of business.

I should also point out that it is not necessary for me to "prove" or even show data that chelation doesn't work - it's up to you and the other people promoting it to "prove" that it does work. You're the one making the claim, so you're the one who has to prove it. That's how it works.

Oh, and your "straw man" argument about poisoned children and your attempts to cast aspersions about my character and motivations - they aren't data, either. If you want to make your point, how about pressuring Buttar or any of the myriad other "alternative" practitioners into actually publishing their data? All the heated rhetoric in the world can't stand against a single data point.

Here is another thing for you to chew on, since you mentioned "drug companies". For good or ill, the US vaccine manufacturers have been indemnified against lawsuits since passage of the Vaccine Injury Compensation Act in 1986. As a result, the government (that's you and me) will pay any claim made for a vaccine-related injury. Of course, the standards for proving those claims were tightened considerably by the Clinton administration, but the program still protects the vaccine manufacturers against lawsuits.

My point is this - many of the people promoting the vaccine-injury hypothesis of autism have claimed (and you may have claimed this as well) that the "drug companies" are covering up evidence that the vaccines cause autism. Well, given that the "drug companies" are protected from lawsuits resulting from vaccine injury, that doesn't make sense. In fact, about the only way a vaccine manufacturer could by successfully sued for a vaccine injury would be if they knowingly or negligently concealed information.

So, how do you explain that?


Prometheus

14 January, 2006 07:39  

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