Monday, June 05, 2006

A LETTER TO DATELINE

Last night (June 4th), NBC’s Dateline aired a short segment on chelation as a potential treatment for thimerosal-induced autism. Although far from perfect, the piece was noteworthy for its overall balance.

Balance is something we’re not always used to seeing from a national media that is overly dependent on advertising revenue from the pharmaceutical industry. Along with the talking heads from the CDC and AAP telling us that we’re so wrong to believe we’re doing any good, however, NBC showed brief snippets of video evidence that recovery may be more than just a pipe dream (including a wonderful shot of Scott Shoemaker and his son who has come so far in so short a time).

Fifteen minutes (actually, a bit less) is too short a time to give a complete picture, but Dateline deserves a lot of credit for telling this story at all. Below is the text of an email my wife and I sent to NBC.

As the parents of an autistic child, we would like to thank NBC for presenting a fair and objective report concerning Dr. Jim Adams’ study of chelation. We are, quite frankly, not used to seeing such balance from the national media, and the staff of Dateline is to be commended for this report.

The possible connection between vaccines and autism is far too complex an issue to be presented in such a limited amount of time, and your failure to mention several key points is therefore understandable. That being said, the following should be noted.

First, although parent-driven advocacy groups are at the spearhead of the political debate, the scientific debate includes physicians and researchers on both sides. That is, the hypothesis of a connection between mercury and/or vaccines and autism has support within the scientific community.

Second, it oversimplifies the issue somewhat to focus on thimerosal as a direct cause. The fact is that ethylmercury not only causes direct neurological damage, but it can also harm immune systems in children to the point that there is an increased susceptibility to other environmental insults, including other heavy metals (such as lead) and even the attenuated live viruses found in vaccines that do not include thimerosal. It could be said that the immune system in these children is overwhelmed.

Third, chelation should not be viewed as a cure-all in itself, but rather as one part of a complete biomedical approach to autism. The decision to chelate can only be made after appropriate testing to ensure that metal toxicity is indeed a problem. Moreover, chelating heavy metals in a child whose immune system is unable to excrete the chelated metal from the body may not do the job. A complete approach takes into account the need for diet, supplementation of vitamins, minerals, enzymes, and probiotics, and the introduction of glutathione. Additional therapies may also be needed to attempt undoing any permanent damage imposed by the mercury or other heavy metals.

Fourth, our understanding is that Dr. Adams’ study uses only DMSA as a chelator. In fact, there are at least three different chelators (DMSA, DMPS, and EDTA) that are used with various delivery means. Also, many physicians are employing natural chelators in children. What is appropriate for one child may not be appropriate in another, which points to the need for further studies beyond the work Dr. Adams is doing.

As Dr. Adams implied in your report, it is perplexing why nobody has yet conducted the clinical trials so many parents want to see done. A related question is why those who dispute the connection refuse to perform any clinical or biological studies that might shed light on the possible causal connection. Instead, the Centers for Disease Control, the Institute of Medicine, and the American Academy of Pediatrics all rely on a handful of flawed epidemiological reports. The primary study on which they rest their case, and the only one they cite that actually looked at populations and exposures in the United States, was termed by its lead author as a “neutral” study, indicating that no conclusions could be drawn and more study was required. Somehow, our medical and scientific leaders have decided that “neutral” really means “negative.”

Finally, your report included a reference to chelation opponents bringing up the death of an autistic child as an argument against the procedure. What was not mentioned was that the tragedy in Pennsylvania occurred not because a child was being chelated, but rather because the wrong chelating agent was used. Instead of injecting the child with Calcium EDTA to chelate heavy metals, the treating physician, for reasons unknown, used Disodium EDTA, an agent designed specifically to chelate calcium. The result was hypocalcemia, which resulted in the loss of a young life. Although there are certainly many lessons to be taken from that incident, those lessons do not include an inherent danger of chelation performed according to appropriate protocols.

Again, we would like to extend our thanks to NBC, the staff of Dateline, and Dr. Jim Adams.

Wade and Sym Rankin
Mandeville, Louisiana

14 Comments:

Blogger Do'C said...

Hi Wade,

You wrote:

"The decision to chelate can only be made after appropriate testing to ensure that metal toxicity is indeed a problem."

Can you define "appropriate testing" for any "new to the diagnosis" parents who may read this in the future? Please cite normative studies (real peer-reviewed science) that explain the methodology and reference norms for mercury toxicity in autistic children. If measurement follows provocation, please cite the appropriate real peer-reviewed research that explains the methodology and supporting normative studies. Don't forget to read the bottom of a DDI toxic metals report for the important disclaimer, and don't forget to account for reporting mercury as a ratio to creatinine taking into account potential creatinine differences among autistic children and controls (note).

Note:
Source: Pediatrics International, Volume 48, Number 3, June 2006, pp. 292-297(6)

6/5/06, 10:00 PM  
Blogger Ian Parker said...

Hi Wade,

I thought it was a great letter.

Thanks,

Ian

6/6/06, 9:42 AM  
Blogger Wade Rankin said...

Tanks, Ian.

Dad o' Cam,

I frankly have not had enough time to really take a good look at the Whitely, et al study you cite, so I'm not sure what impact -- if any -- creatine levels would have on testing for metal toxicity. But as far as "appropriate testing" goes, I am obviously referring to a provocation. Dr. Adams used a provoked reaction in phase one of his study to determine what children would be appropriate to take part in the actual clinical chelation trials of phase two.

This post is really about media coverage and what they did right, and what they still need to address, so it's really not the time or place to restart the same old debate about whether provoked testing has any efficacy, and the sidebar debates that always accompany that and similar discussions regarding what constitutes good science, what are good peer-reviewed journals, whether peer review even acts a guaranty of "good science," and whether every hypothesis lends itself to double-blinded study. As for the question of provoked testing for metal toxicity, there's a lot out there on both the pro and con sides, and you've been around long enough that you don't need me to point you in the right direction.

Although you (meaning Dad of Cameron) have always struck me as someone who is willing to listen carefully to views with which you don't agree, these debates always wind up being dominated by those on either side of the issue who really don't want to admit the validity of the other side. Anyone who wants to start up that debate in these comments is welcome to do so, despite it being off-topic. Just don't expect me to participate. I have neither the time nor the inclination.

I believe that understanding the scientific debate is important, and must be addressed to some extent in order to discuss the policy issues that I focus on. Nevertheless, I have never held this out to be a scientific blog, and I try to avoid the impression that I am giving advice of a medical or scientific nature here. If I have failed in that intention with this post, I apologize. Any parent who is "new to the diagnosis" who is considering using any biomedical approach, including but not limited to chelation, should do a lot of research and decide for themselves what makes sense. That research should never be limited to one side of an ongoing debate.

6/6/06, 11:38 AM  
Anonymous Sue M. said...

I agree. Nice letter, Wade.

Dad of Cameron, is your issue with the method of testing for heavy metal toxicity? If so, are you aware of any organizations (such as the CDC, FDA or AAP) who are actively looking at the information which is presented and are they actively working with experts in toxicology or chemistry to come up with more accurate methods of testing? I suppose the blood test is your test of choice? That's wonderful except for the fact that many experts have given reasons why that may not be adequate. Have the above organizations come out with their own "experts" who can adequately explain in detail why blood testing is adequate? Would they be willing to debate the issue? Obviously you can't answer that question but I would be open to hearing/seeing the debate between the "experts" on both sides. In fact, I would spend money to see it. All proceeds to benefit the "winners". A friend of mine once posted on his blog that:

"A treatment used prior to proof is called an experiment".

If we are going to go there don't we need to be honest (and not hypocritcal)? Our entire vaccine program is one big experiment. Isn't it? Mercury injected into babies? Aluminum? Cyanide? Live viruses at the same time as these toxins? One big messed up experiment where opposing views are swept under the carpet, where bogus epidemiology trumps all else. Nice.

6/6/06, 11:49 AM  
Blogger Do'C said...

"The decision to chelate can only be made after appropriate testing to ensure that metal toxicity is indeed a problem."

Yep Wade, I saw that as "medical advice".

By the way, I thought the Dateline piece was pretty balanced too.

6/6/06, 2:47 PM  
Anonymous Sue M. said...

Dad of Cameron wrote:

"Yep Wade, I saw that as "medical advice".

- In a letter to Dateline? Maybe he should have signed it Dr. Wade Rankin :)

6/6/06, 3:03 PM  
Blogger Do'C said...

Sue,

The letter he wrote to Dateline appears here on this blog, which is why I wrote:

"Can you define "appropriate testing" for any "new to the diagnosis" parents who may read this in the future?"

Wade's letter, available to any parent that happens to read this post, implies that such "appropriate testing" exists.
It could exist, I'm just asking for the proof of this specific item.

6/6/06, 3:27 PM  
Anonymous Sue M. said...

So as not to confuse the "new to the diagnosis" parents, maybe Wade should leave the definitions of "appropriate testing" to the experts. We wouldn't want to confuse anyone.

6/6/06, 4:00 PM  
Blogger Do'C said...

The U.S. system of regional poison control centers might have the necessary resources for you to consider them "experts" in metal toxicity. Would that work for you Sue? Or are they all part of a conspiracy?

6/6/06, 4:35 PM  
Blogger Wade Rankin said...

{sigh} I would certainly hope that nobody is foolish enough to seek medical advice from a layperson's blog. For that matter, trying to extract medical advice for a particular basis from a doctor's blog would be asinine as well. In that context, Sue is absolutely right. Appropriate testing should be left up to the treating physician, as approved by an educated patient/parent. They are the experts for the individual case.

As a matter of pure commentary, there is at least one published report measuring mercury excretion after a challenge test in autistic children (Bradstreet, et al), but I already know that you would disagree about the journal's credibility. (As I mentioned earlier, I really don't want to be baited in this thread into an off-topic debate over what makes a study legitimate, what makes a journal legitimate, and the reasons why otherwise valid research may not be accepted in a mainstream publication.) Nevertheless, challenge testing itself, while controversial, has been positively written of in a number of peer-reviewed publications in other contexts.

It also deserves mentioning that, as pointed out by Holmes, Blaxil, and Haley, a negative challenge test for mercury does not necessarily rule out metal toxicity as a causative factor in autism. But I understand, of course, that you probably don't think as highly of that study as I do.

6/6/06, 5:34 PM  
Anonymous Sue M. said...

Dad wrote:

Dad Of Cameron wrote:

"The U.S. system of regional poison control centers might have the necessary resources for you to consider them "experts" in metal toxicity. Would that work for you Sue? Or are they all part of a conspiracy"?

- Are they interested in having an honest and open debate with some of the people who have a differing views on the topic? I'm all for it. No issues. Do you have the science that they have put forth on this issue? I'd be happy to pass it along and see if anyone much more qualified than I would be interested in taking a look. Really, Dad, I have no issues with a debate and with conflicting views. I would much prefer that to dead silence. So, have they taken the topic on? Can you lead me to their stance?

6/6/06, 5:43 PM  
Blogger Do'C said...

"Nevertheless, challenge testing itself, while controversial, has been positively written of in a number of peer-reviewed publications in other contexts."

A very good point Wade. It would seem plausible that all that would be needed was some real peer-reviewed research and publication of normative studies in the right context.

"Appropriate testing should be left up to the treating physician"

I agree, the only thing I'd add is to look for treating physicians (board-certified in developmental pediatrics as an ideal) who stick to good science.

Sorry Sue, I don't know if they have taken on the topic or what their stance might be. I imagine they would insist on scientific debate.

6/6/06, 6:20 PM  
Blogger Wade Rankin said...

{sigh again} Here we go into a debate I really didn't want right now.

I agree, the only thing I'd add is to look for treating physicians (board-certified in developmental pediatrics as an ideal) who stick to good science.

Any physician who truly believes they are providing appropriate care also believes they are following the good science. The problem in our situation is that the scientific inquiry is so incomplete. I have seen a lot of attempts at debunking the laboratory studies on which DAN! doctors and like-minded practitioners rely, but I have seen very little in real science performed that comes to opposite conclusions. What constitutes "real science" is the real debate.

Relying on a particular specialty is no guaranty of "real science" or appropriate treatment. To use your "ideal," many developmental pediatricians cling to a behavioral model of autism firmly rooted in the DSM classification, and refuse to even consider the possibility of a biochemical component. One developmental pediatrician once told my wife and I that our son's only chance was a special school and to get him on Ritalin right away. Mind you, our son was well under the age at which even the manufacturer states Ritalin should not be used.

Qualifications matter far more than titles.

6/6/06, 6:36 PM  
Anonymous Sue M. said...

Dad of Cameron wrote:

"Sorry Sue, I don't know if they have taken on the topic or what their stance might be. I imagine they would insist on scientific debate".

- Oh, my bad, since you brought them up specifically I thought for a nanosecond that you knew what they had to say on the topic. That would have been nice. A scientific debate would be just what this "controversy" needs. No more of this dead silence from "your side".

p.s. I did a quick google search (not very scientific I know) on regional poison control centers, heavy metal toxicity, mercury and thimerosal-- it's not looking too good for you. Seems they may know something that you don't :)

6/6/06, 6:37 PM  

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