CHICAGO – A government agency has dropped plans to test a controversial treatment for autism that critics had called an unethical experiment on children.
The National Institute of Mental Health said in a statement Wednesday that the study of chelation (kee-LAY’-shun) has been discontinued. The statement says the agency decided the money would be better used testing other potential therapies for autism and related disorders.
The study had been on hold because of safety concerns . A study published last year linked a chemical used in the treatment to lasting brain problems in rats.
The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science.
Back in June, I blogged about the possibility of the delayed chelation study being released. It had been delayed due to the same ethical concerns that now seem to have scuppered it. I can only view this development with relief. As I said at the time:
Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic.
Click on the link above to see some quoted testimony from Dr Jeffery Brent, world renowned Toxicologist. His opinion on the need for chelation of autisitic children is thoroughly discussed. Basically, when you do the provoked, non-standard tests from labs that make a good living from charging for these tests, they come back positive. When experts like Dr Brent do the gold standard tests, 100% of the time they come back normal.
There is no reason to chelate autistic children.
Left Brain Right Brain 
Good for NIH.
How did this study make sense? Even from the supporters, how could it make sense?
First, the question of safety. Obviously, groups like GR/SafeMinds/TACA aren’t questioning the safety of chelation. But, others are.
Next, take the yardstick they are misapplying to the Hornig MMR study. The sample size is small and, lo and behold, they are likely going to be looking at a mix of kids.
Let me explain. GR has backed away from the “It’s all mercury” stance to, “It could be pretty much anything”. What fraction of kids, in their world view, are autistic due to mercury? They have to leave room for viruses, aluminum, formaldehyde, bacteria, overstressed immune systems, mitochondria, etc..
How was NIMH supposed to know if they were chelating the supposed “mercury” kids vs., say, a yeast-infected kid?
Even then, the first step in treating mercury intoxication is to remove someone from the source. Chelation is only for very high, easily measured intoxication. Real world chelation occurs for a short period of time (say 1 month). Chelation in the alt-med autism world appears to go on for months or years.
Had the chelation trial had the expected outcome–no advantage–there were enough differences between this trial and the world of alt-med that it wouldn’t convince anyone in that world.
Perhaps if groups like GR/SafeMinds/NAA would accept science that goes against their expectations (for example, the Hornig MMR study…and the other 20+ MMR studies), there could have been some small reason to do this.
But, putting kids at risk where a negative result would only be rejected. Why should those kids be asked to put themselves on the line for potentially nothing?
Well, one way that they could at least try to get the return data without the ethical dilemma is merely to Evaluate all those kids that have already been chelated.
But from all I keep reading they just trot some up onto stage during an AutismOne, or the like, and don’t have Independent Clinicians (/grin Non ARI/DAN psychs you know?) evaluate their level of Recovery.
This is really good news for autism and for ethics in autism research. It is also very gratifying to all of us who raised concerns with NIH either directly or via our blogs. We have a result!
The parents on EoHarm had already decided that they weren’t going to believe the outcome of the NIH study as it was described. They said that chelation would only improve autism if the kid had been given the proper proprietary blend of minerals/vitamins… who knows what all.
NIH ought to fall on it’s sword for even considering this piece of trash and specifically it ought to haunt Sue Swedo for the rest of her career, though I suppose she’ll walk away from it smelling squeaky clean. By considering it she and the NIH lent credence to the whack-jobs that promote chelation for auitsm, whether fake chelation like TD-DMPS or the real stuff. Swedo is also involved in another study that is just as bad, maybe worse. I think she ought to be let go, but I guess Insel loves her because they needed someone to act out the wishes of a couple of idiot politicians in Washington DC.
Had the NIH found that chelation had no effect, the GR and SM people would have said, “Well you chelated the wrong kids!” Good for NIH for doing the right — the scientific — thing. A small victory for good science against bad public pressure.
Ms Clark, I know what you mean, and I don’t know a lot about this proposed study, but maybe we need to recall that it was government-funded randomised trials of Secretin which pulled the plug on that scam. Nobody else is going to fund projects that investigate the crooked claims made by the usual suspects.
Ringside Seat,
(Just to preface that there are others here that know the study details and background much better than I.)
I know where you are coming from, because I remembered the outcome from the controlled secretin studies. I also see Ms. Clark’s points, because a few months back the criticisms were that this study was not going to show anything because it would be missing some particular factor, not be long enough, not be the right chelator, etc., etc.
Now that it has been cancelled, the tune has changed to governmental cover-up and conspiracy to suppress the truth.
I would say, damned if you do and damned if you don’t.
Based on the current response to the Hornig, et.al. MMR study (and the substantial body of negative results before that), I believe any negative result would never be credited by those who only seek positive results that affirm pre-existing belief.
I changed my mind on the the Swedo study after reading a paper that showed potential of inducing cognitive impairment to children receiving chelation in the absence of elevated metal poisoning. I don’t see how they could ethically allow this study with that background.
It still leaves the conundrum of the free-wheeling off label chelation “for autism” out in the marketplace.
Thoughtful House? Hello? Oh, never mind. A response from them on this would be entirely predictable. I have a 5 year autistic son who I mistakenly allowed to be treated for a short time at TH. They are big on chelation. As a few months went by, I did more and more research and became more and more afraid of what they were trying to do to him. I permitted a month-long DMSA treatment to be done on him and I said never again.
And so I pray every day that I haven’t allowed him to be permanently harmed by that. (BTW, the unprovoked metal levels – from Doctor’s Data et al, of course – were perfectly normal, but the provoked levels – of one metal – were still only slightly high.) Unfortunately, I could never get my wife to see the problems in all of this and it has cost me my marriage. But for the time being at least, it has prevented my son from being subjected to dangerous treatments and experiments.
@A Proud Father: I’m really sorry to hear about your marriage. It is terribly sad that these people have such an influence on parents. I know you’re not the only father to be separated from his wife due to these people but I am full of respect for your determination not to expose your son to further ‘treatment’ at the hands of TH.
Ringside Seat,
The studies on secretin were largely done with “private” money. Some of the early studies were done by universities using their own research “slush funds” and the largest trial – the one that finally drove the stake through the heart of secretin – was funded by Repligen, which hoped to make a fortune selling recombinant secretin for the treatment of autism.
Prometheus.
DMSA may be a reasonable treatment for a some lead poisoned kids, but it’s not risk-free, and the child should be removed from the source of the lead, and should be evaluated by a real, board certified toxicologist, not by some untrained quack.
http://www.rxlist.com/cgi/generic/succimer_wcp.htm
Re Secretin: I think if you Google secretin and “national institute” you will get a fairly quick list of all the government-supported work. There’s a big bunch going back, I think, to 1999.