Thursday, August 25, 2005

"We have met the enemy...and he is us!"

(With apologies to Pogo)

After returning from our family's summer backpacking trip - far from the Internet, cell-phones and voice-mail - I am greeted with the doleful news that a 5-year-old autistic child has died as the result of being "chelated" for mercury (see here).

The death of a child is always a tragedy. What makes this death even worse is the senseless way in which it occurred. I want to say up front that I do not blame the child's parents for his death - they were misled by a doctor who should have known better. Here are just a few of the things that their son's doctor, Dr. Roy Kerry, should have known:

[1] EDTA is not effective for chelating mercury. EDTA has little affinity for mercury - the drug of choice for mercury chelation for nearly thirty years has been DMSA.

[2] Intravenous EDTA is much more dangerous than oral DMSA, even though oral DMSA is hundreds of times more effective at removing mercury.

This doesn't even touch on the question of whether mercury causes autism or if removing mercury cures (or improves) autism.

So, even if you "buy in" to the notion that mercury causes autism (I don't), the use of EDTA is senseless. It is probably medical malpractice.

Why is it that people are willing to put children at such risk? The parents, it appears, are willing to do anything to save their children from the ravages of autism. This much I can understand - as a parent, I am willing to sacrifice anything to protect "my babies". However, the fever pitch of the parents' desperation is not entirely of their own making.

For several years now, groups like DAN! (Defeat Autism Now!), SafeMinds and Generation Rescue have maintained a drumbeat of fear and suspicion, telling parents of autistic children that their children are poisoned by mercury and that they must immediately take steps to remove that mercury or their children will be "condemned to a living hell". Parents, not surprisingly, are alarmed and - faced with this "ginned up" time pressure - rush to judgement.

Faced with the apparent certainty of the autism-mercury movement - with its testimonials from parents and pseudoscientists - the cautious advice of their "mainstream" doctors seems timid and half-hearted. Warned, "Don't miss the window of opportunity!", parents leap from the frying pan into the fire.

Now, I'm sure that most - if not all - of the people advising parents to put their children in harm's way are doing so out of a sincere conviction that they are right. They have the best of intentions. They are Crusaders for the health of autistic children.

I think that the name "Crusader" is particularly apt for this group of people. Like the Crusaders of the eleventh century, they are absolutely convinced that they are right and that their cause is just. And, like the Crusaders of the eleventh century, they feel that whatever they do is justified by the righteousness of their cause - even if innocent people get hurt.

The absoluteness of these twenty-first century Crusaders was brought home to me by a post I found on Kevin Leitch's excellent LeftBrain/Right Brain blog. When asked what it would take to convince him that he was wrong, an autism-mercury supporter replied [typos in original]:


"I could easily change my mind If:Our US government health agencies were not so evasive about answering direct questions. If they mandated the parents of ASD kids be given the details on the vaccines and what exactly was injected into them. The CDC, FDA, IOM and AAP admitted “We Screwed Up Big Time” We gave these kids vaccines/neurotoxins at levels far above our own thresholds."
It appears that he will change his mind only if "the government" admits that he was right in the first place. Since this seems paradoxical, I can only assume that what he means is that nothing will change his mind. He is so convinced that he is right that no amount of data could convince him otherwise - he would just assumed that it was faked, "ginned up" or otherwise fraudulent.

Faced with this sort of absolutist, dogmatic mindset in the autism-mercury movement, is it any wonder that real science can make no headway with them? Anything that threatens their belief that mercury causes autism is dismissed as fraud and anything that reinforces their beliefs is held as Gospel, no matter how ridiculous.

And what about the parents who - searching for information about autism - stumble onto this group? Faced with the absolute certainty of the autism-mercury movement on one hand and the mumbled probabilities and "The data suggests..." from real medicine and science on the other, which way will most confused, frightened and desperate parents jump?

Now the autism-mercry movement has blood on its hands. Like the Crusaders sacking towns and killing innocents, they will probably justify it. They may even find a way to blame it on "mainstream" medicine. No matter how they "spin" it, though, they are at least indirectly responsible for this poor boy's death.

Crusaders. Yeah...it fits.


Prometheus.

4 Comments:

Blogger hollywoodjaded said...

"No matter how [the 'Crusaders'] "spin" it, though, they are at least indirectly responsible for this poor boy's death. "


Sadly, I couldn't agree more.

25 August, 2005 16:30  
Anonymous HCN said...

One of them has posted on Orac's blog asking why Orac and the IOM cannot accept the "lab data" that shows autistic children have heavy metal poisoning.

I do not recall there being any REAL data showing that autistics have heavy metal poisoning... and even the study you called the "Perfect Example of How NOT to do a Study" showed autistic kids with LESS mercury.

There seems to be lots of reaching and grasping at straws. It is all so incredibly sad.

25 August, 2005 18:36  
Blogger JP said...

For several years now, groups like DAN! (Defeat Autism Now!), SafeMinds and Generation Rescue have maintained a drumbeat of fear and suspicion, telling parents of autistic children that their children are poisoned by mercury and that they must immediately take steps to remove that mercury or their children will be "condemned to a living hell". Parents, not surprisingly, are alarmed and - faced with this "ginned up" time pressure - rush to judgement.

Faced with the apparent certainty of the autism-mercury movement - with its testimonials from parents and pseudoscientists - the cautious advice of their "mainstream" doctors seems timid and half-hearted. Warned, "Don't miss the window of opportunity!", parents leap from the frying pan into the fire.


It's convenient cover, though, for not doing peer-reviewed research on biomedical treatments like chelation, et al. "We don't have time," they'll exclaim, "because we have to help children NOW!"

My argument is not with research into chelation or vitamin supplementation or restrictive diets or gold flecks. It is more with the promotion of those avenues by groups like Generation Resrcue as not simply experimental, but proven fact. They're promoting medical interventions that they have no proof even work, short of parental testimonials and the word of doctors.

Yes, let me state that again.

They're basically taking these doctors word for it.

25 August, 2005 19:04  
Blogger Prometheus said...

TO: JP

I have noticed that the clinical arm of the autism-mercury movement (e.g. Dr. Buttar, Dr. Bradstreet, etc.) seem to have plenty of time to present their "findings" to the IOM, to Congress (in safe committees) and to parents all over the country, but they never seem to have quite enough time to get them written up and presented to a peer-reviewed journal for publication.

I realize that getting an article published can be an intimidating process, but it is still the only way to present your ideas in a way that allows their true merit to be openly discussed.

However, if their intent is to only present their "findings" in a completely sympathetic forum, then they are doing exactly right. Talking to groups of parents desperate for some hope is preaching to the choir - there's little danger someone might ask an embarassing question.


Prometheus.

26 August, 2005 10:02  

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