Tuesday, September 06, 2005

Locked-In and Threw Away the Key

Against the advice of my physician, I have gone over some of the posts sent to me from the "Evidence of Harm" group on Yahoo. This has probably done irreparable harm to my stomach, but I hope it was worth it.

Here is one of the bits of unreason sent to me - the data is apparently the date it was posted. My commentary is in italic.

1 Sept 2005

Dr. Buttar is a polarizing figure. Why?

My thoughts:

1. He sat in front of Congress and said a very high number of kids recovered using TD-DMPS. But, he has never published anything, videotaped anything, or has shown us these kids. In a world where everyone has been burnt by a "cure", this will make parents very suspicious.

My thoughts exactly.

2. He apparently has a financial interest in TD-DMPS. I don't know if these means he gets $50 a year in royalties or $500,000 a year, but it makes him seem like a profiteer.

If he's only getting $50 a year, he's being cheated - his cream would have to be 36% gold (at 6 Sept 2005 spot prices) to cost $160 an ounce to produce.

3. He is a bull-in-a-china-shop personality. This guy is a formerArmy officer, a former bouncer, physically imposing, who happens to also be very smart. He suffers fools poorly and lacks a bit of the diplomacy that someone in his position may need to navigate these times.

In my experience, people who bluster and posture generally do so because they don't have the data to support their position.

4. Because of all of the above, it is a natural human behavior to project our intense frustration over what has happened to our children (and our respective lives) because of autism onto him. He is a very easy target.

So, the guy is polarizing. But, there is another side:

1. As someone who sees every email Generation Rescue receives, TD-DMPS is the overwhelming choice of parents reporting gains in their kids. Could this change? Absolutely. But, that's today's reality.

A very biased sample - I doubt that people who aren't chelating their children are going to report this to Generation Rescue.

2. We use 4 different Doctors to get advice about treating my son. After a long wait, we got a chance to speak with Dr. Buttar. My wife and I think we are pretty knowledgeable about our son. Buttar taught us things no other Doctor has. He knows his stuff. Period.

Buttar either taught them things they didn't know or things that weren't so - take your choice. He may know his stuff, but what is "his stuff"? How to maximize his bottom line?

3. If you spend time with him, most people quickly realize he is a God-loving Southerner who loves kids and wants, intensely, for them to get better.
Being charismatic is not the same as being competent - or even ethical. And Edgar Ray Killen is a "God-loving Southerner who loves kids" - let's hope this isn't what the author meant.

4. A film crew doing a documentary wanted to film Buttar and his recovered patients. I set up the visit. Buttar produced the families with the recovered kids. It's on tape.
Film of "recovered children" is just a testimonial on video. The plural of anecdote is not "data".

5. A Doctor has been out to review Buttar's records and claims. I know this for certain. This Doctor claims it is all true, I know this, too. Is that a peer-reviewed study? Hell no, but I'm not waiting.
Come on, "a Doctor"? Name? Purpose of the review? Good thing you're not waiting for Dr. Buttar to publish his findings - it would be like waiting for Godot.

6. If you can't find, on your own, the scientific proof that DMPS actually chelates mercury, you aren't trying. The only question is whether DMPS works in a transdermal form. Here are some thoughts:

- What doesn't the skin absorb that it comes in contact with? Isn't that part of the whole problem? Isn't that why my son has antimonypouring out of his body, because he absorbed it from his pajamas,matress, and car seat? It's our largest fu%%ing organ!!!
While the skin is the largest organ, it doesn't absorb MOST things it comes in contact with. If it did, we'd be in the same situation as the amphibians. Oh, and only a very small part of the skin is involved in "fu%%ing".

- If you think TD-DMPS doesn't work, here's a simple idea. Do a challenge dose on yourself. Just put 80 drops on your skin and seewhat happens. I try everything we put on or in my son. I did this. Just do it, then report back.
I'll bite - what happens? What happens when a neurotypical adult uses transdermal DMPS? Did you become less autistic? That's the REAL question, isn't it?

Leave Buttar alone. If you are venting at him, look inside yourself.If you don't believe in TD-DMPS, don't use it. Write to GenerationRescue and explain that you tried and it did not work. Don't roach other people's buzz because it did not work for you. Oh, and if you gave it less than 18 months, that may not have been enough time. Yes, that is a brutal paradox - we are running out of time!!! But, the sad reality is chelation takes a long time. If someone says, "I tried TD-DMPS for 3 months and it did not work" - that is not credible.
What?!?!? Chelating for less than 18 months isn't enought time!? Eighteen WEEKS is more than enough time, if you're using a competent chelating agent.

I might also point out that 18 months in the life of a young child is an EXTREMELY long time. Think of all the development that occurs in "typical" children in that time. My niece went from being able to say only a few fragmentary words to speaking in full sentences in that amount of time. Without TD-DMPS.

And I understand that Dr. Buttar wants parents to commit to a full two years of TD-DMPS treatment. At $160 a month (assuming you use an ounce a month), that's $3840 for two years. Add in the $800 an hour consultations, lab tests and travel expenses and you're talking about some real money.


And it seems odd to tell people that don't get any results from TD-DMPS to not "roach other people's buzz" - by which I assume the author means to keep quiet and not disturb other people with the possibility that TD-DMSP is a placebo. The phrase used is surprisingly apt - it suggests that the good feelings parents get from using TD-DMPS are as illusory as a marijuan "high". Very apt, indeed.


As you can see, the autism-mercury movement is not exactly in touch with reality as we know it. In this one post (authored by a prominent member of the autism-mercury movement), we see the following:

[1] Excusing a person who is clearly profiteering from the parents of autistic children because he is "on our side".

[2] Accepting the unsupported (by anything!) "word" of a man that the cream he makes and sells at exorbitant cost is the only treatment that will cure the mercury poisoning that he diagnoses in children during an $800 consultation. You'll note that Dr. Buttar is very clear that parents should "accept no substitutes!" (see here).

[3] "It works because I say it works!" - even the author could not explain how they knew that the TD-DMPS was absorbed, other than to say that they tried it on themselves and "knew".

[4] Discouraging people from discussing treatment failures. Both the "if you gave it less than 18 weeks, that may not have been enough time" and the apt "[d]on't roach other people's buzz" comments encourage the "proper" mindset - if the treatment fails, it's your fault and "we don't want any negative thinking".

So, uncritical acceptance of information from "our" people and actively discouraging a frank and open discussion of the limitations and failures of the treatment advocated. Sounds like Scientology, not science.


Prometheus.

(Next: More from the EoH garbage bag).

11 Comments:

Blogger Anne said...

I was visiting the Chem labs at UC Santa Barbara, where my son lives in the hell that is asperger's syndrome and studies as an undergrad. They showed us a project they are working on to develop internal patches for medications that cannot be absorbed through the skin. You would swallow a capsule with the patch inside and when the capsule disintegrated, the patch would adhere to the intestinal wall and deliver the drug. Because, you know, all medications can't be absorbed through the skin.

I was just kidding about the hell part, but not about the internal patches.

Anne

06 September, 2005 20:56  
Blogger JP said...

And you said *I* was crazy for spending time on that board. ;-)

This is something I don't understand, and maybe someone can help me out here.

You have a young child who's obviously developmentally delayed in some fashion. How do you know he or she is "doomed to a life of 'hellish autism'" or is simply, well, developmentally delayed.

The rush to treat kids at younger and younger ages (I mean, JB Handley's kid was only two) with chelation should give everyone pause - because frankly, you have NO IDEA whether that child is going to catch up with his peers, or would come close enough with a little bit of help that doesn't involved DMPS or EDTA or megadoses of vitamins.

The only way one can know that for sure is to (wait for it) test a group of children with these chelating agents against a group that doesn't receive them.

But if you can convince parents that they "have to act now" because the window of opportunity for treatment is closing, well, that should raise a red flag. And requiring a long time to see results in a condition that naturally has periods of regression and improvement should be another one.

You know who else makes claims like that? Chiropractors.

http://www.quackwatch.org/01QuackeryRelatedTopics/chiroinv.html

The next volunteer, a healthy 29-year-old psychologist, visited four more chiropractors for check-ups. The chiropractors were selected from the telephone directory without regard to their advertising practices. The first diagnosed an "atlas subluxation" and predicted "paralysis in fifteen years" if this problem was not treated.

This is also a common gambit of those who propose "cures" for chronic conditions that wax and wane like multiple sclerosis:

http://www.quackwatch.org/01QuackeryRelatedTopics/ms.html

07 September, 2005 08:57  
Blogger JP said...

Futhermore, isn't it fascinating that the post you referenced mentions that you have to wait "up to 18 months" for results from chelation, yet you see parents talking about how they see results almost immediately?

07 September, 2005 09:01  
Blogger Prometheus said...

One common thread in a lot of autism "therapies" (and, for that matter, a lot of "alternative" therapies) is the need for lots of time. This way - consciously or unconsciously - the promoters allow a wide enough "window" for spontaneous improvement, cyclic fluctuation or random chance to bring about the desired result.

For example, a popular "natural" remedy for colds advises that it may take two to three days for their "all natural product" to work its gentle wonders. This is just a bit longer than the average "time to improvement" after the symptoms of a cold begin. Convenient.

Another gambit used is the "take at the first sign of symptoms" strategem. This allows the remedy to "take credit" for all the times when symptoms never progress or when a person misinterprets the cause of symptoms - e.g. sore throat and stuffy nose from allergies or smoke rather than a viral "cold".

However, an 18 month window has got to be some sort of a record. If a child doesn't show some improvement during that time, they don't have autism (autism is not a syndrom of developmental arrest - just delay).

As JP pointed out, beginning the treatment earlier (e.g. at 2 years) allows the "therapy" to take credit for "curing" kids who were "stalled out" in development and would have spontaneously resumed a more normal developmental trajectory even without treatment.

But, since Dr. Buttar will never submit his lotion for study, we will never really know, will we?

Prometheus

07 September, 2005 09:59  
Blogger bonni said...

If you can't find, on your own, the scientific proof that DMPS actually chelates mercury, you aren't trying.

But can you find authentic scientific proof that mercury "causes" autism, and that removing it will "cure" autism?

Didn't think so...

07 September, 2005 22:38  
Anonymous Anonymous said...

If you can't find, on your own, the scientific proof that DMPS actually chelates mercury, you aren't trying.

Can anyone find anything to indicate Hg is excreted as a DMPS chelate? Maybe these folks and their X-ray absorption spectroscopy just aren't trying.



Chem Res Toxicol. 2004 Aug;17(8):999-1006. Related Articles, Links


Mercury binding to the chelation therapy agents DMSA and DMPS and the rational design of custom chelators for mercury.

George GN, Prince RC, Gailer J, Buttigieg GA, Denton MB, Harris HH, Pickering IJ.

Department of Geological Sciences, University of Saskatchewan, Saskatoon, Saskatchewan S7N 5E2, Canada. g.george@usask.ca

Clinical chelation therapy of mercury poisoning generally uses one or both of two drugs--meso-dimercaptosuccinic acid (DMSA) and dimercaptopropanesulfonic acid (DMPS), commercially sold as Chemet and Dimaval, respectively. We have used a combination of mercury L(III)-edge X-ray absorption spectroscopy and density functional theory calculations to investigate the chemistry of interaction of mercuric ions with each of these chelation therapy drugs. We show that neither DMSA nor DMPS forms a true chelate complex with mercuric ions and that these drugs should be considered suboptimal for their clinical task of binding mercuric ions. We discuss the design criteria for a mercuric specific chelator molecule or "custom chelator", which might form the basis for an improved clinical treatment.

08 September, 2005 11:33  
Blogger JP said...

That's different.

08 September, 2005 13:36  
Blogger Prometheus said...

Interesting...

However, whether or not DMPS or DMSA form a "true chelate complex" with the mercuric ion or not, they have been shown clinically to remove lead and mercury from the body.

Again, whether or not DMPS or DMSA can remove mercury is not in question (although perhaps it ought to be). The issues are:

[1] Is DMPS absorbable through the skin in quantities sufficient to perform any clinically significant chelation of mercury? (Not shown)

[2] Does treatment with DMPS or DMSA improve the signs and symptoms of autism when the evaluators are blinded to whether or not the child received treatment? (Not shown)

Thanks for the article citation, Anonymous! I'll probably have to get that through interlibrary loan, but it looks intriguing.


Prometheus.

08 September, 2005 14:59  
Anonymous Anonymous said...

JP noted:
Futhermore, isn't it fascinating that the post you referenced mentions that you have to wait "up to 18 months" for results from chelation, yet you see parents talking about how they see results almost immediately?

I have a similar experience to relate. I have Asperger's syndrome, and was arguing with my own mother, of all people, about the virtues of chelation therapy. She insisted that the therapy could help me, and she told me how her dentist went through with it and said dentist "felt a lot better". I noted that heroin will also make you "feel a lot better".

She hasn't brought up chelation since.

09 September, 2005 22:15  
Blogger Ed in Colorado said...

I have personal experience with chelation of my autistic son. My son's circumstances are unique and I would not present them as an example of how autistic children are helped by chelation. Nevertheless, he did improve. What happened is a long story with documentation available to back it up. But I will not bother telling it. Why? Because such stories are simply dismissed as anecdotal. (Yes, I understand that even with the documentation, it is anecdotal.) But in this, as in all cases that might remotely tie mercury with autism, it will never be followed up with double blind testing. For that, the IOM, CDC, NIH, APA, AMA deserve the wrath they incur from the autism community.

07 October, 2005 16:06  
Blogger Bill Hooker said...

P,

if you have any trouble getting that article I have a pdf of it I can send you; email me anytime.

03 November, 2005 08:05  

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