I posted yesterday on the cancellation of the NIH study that was going to be examining chelation’s efficacy as an autism treatment.
What I said was that it was a good idea and it is. The simple facts are that autistic children are not toxic. The only labs that consistently find autistic children to be toxic are the labs Dr Jeffrey Brent identified as ‘these ‘doctor’s data’ type of laboratories’. In fact, its probably worth repeating his testimony about these labs:
Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?
A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration. [For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.
On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.
The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re supposed to have increased levels with provoked examples.
Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.
A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.
To sum up, the labs that consistently find a need to chelate autistic kids use the wrong sort of tests. When expert Toxicologists such as Brent do the proper ‘gold standard’ testing, the results are normal 100% of the time.
Its as simple as pie. You use the wrong test, you’re going to get the wrong results.
And yet, over on the Age of Autism website, they’re getting very angry about this cancellation. The angry opening paragraph to a recent post highlights the lack of logic in their stance:
So who canned the NIMH chelation study as “too dangerous?” Children are given huge doses of chemotherapy and radiation in a desperate effort to save them from cancer – fully knowing the side effects themselves can be deadly. It’s a fair risk most parents are willing to take to help a sick child.
Chemo is a standard treatment for cancer. It is medically indicated. Chelation is not a standard treatment for autism. It is not medically indicated. The reason it is not medically indicated is because there is no evidence metals are linked with autism.
There is a chain of logic that must be followed. If you want a type of treatment to be assessed for its efficacy, then your first step is surely to establish that there is a medical necessity for that treatment. If there isn’t then what you are doing is inflicting a completely unnecessary procedure on a child. In this case, a procedure that has been known to cause lasting brain injury in animals (rats).
The comments on AoA go from the bizarre:
So, why do I sense Pauly PrOffit’s grubby, greedy little fingers on this? This smells like something that he would do
To the paranoid:
THIS HAS BULLSH*T WRITTEN ALL OVER IT!!!
To the conspiracy-esque:
Notice the studies they WON’T do:
Studies on the effects of chelation.
Studies comparing unvaxed and vaxed children for autism.
Studies to find the misdiagnosed adults with autism to prove there’s been no increase.When is everyone going to wake up to what’s happening?
NB – a study to find adults in Scotland is being planned if I recall correctly.
No-one considers the most likely reason for this cancellation:
a) There is no evidence metals cause autism
b) There is evidence chelation can cause injury
c) There is therefore what any rational person would see as an unacceptable amount of risk to children.
And of course we have the usual ‘my child recovered’ stories. Why do these stories never seem to get written up as case studies I wonder? We’re told there are thousands of them – where? Where in the medical literature are they? Apparently there are lots of rogue paediatricians who believe the antivaxxers so why aren’t they doing case studies on the multitudes of autistic children who are now totally recovered?
Personally I think that is what has bullshit written all over it.
Left Brain Right Brain 
Nice! I read the crap over at AoA and their delusions continue to get deeper and deeper. When the world doesn’t conveniently provide the facts to fit their beliefs, it’s a travesty…it’s a conspiracy!…it’s everything except, ‘hey, maybe I am the one out of line here’.
AoA has become a cult. They refuse to address all of the issues, dwell only on the ones they deem relevant, and deny what does not fit into their narrow scope of understanding. It is no different than a group of believers waiting for Haley Bop to come around and pick them up and take them to heaven (hey, they had their ‘evidence’ too), except, in the end, the real victims are their children.
I am fully awaiting the kind of case studies you have asked for too. Verification of the claims of recovery, versus developmental progress expected with normal maturation of the children would go a long way to ease fears that the alternative treatments are just a waste of money, and potentially harmful.
The real conspiracy people should be applying their mind to is whether Andrew Wakefield, who received huge sums from the drug industry over the years, was working for them in promoting an entirely spurious (measles virus) cause of autism, knowing that parents would all go up that blind alley.
The bottom line for this study was that it was unethical and dubious science, to boot. You can’t just do a clinical trial because you have a hunch that a therapy will work. Because human subjects are potentially being put at risk, the bar is much higher. For children, it’s even higher still.
Before a treatment is tested in humans, generally considerable experimental evidence is needed from multiple sources, basic science (such as cell culture and biochemistry) and animal studies. Anecdotal evidence, particularly poor quality anecdotal evidence permeated with groupthink is not enough.
Unfortunately, the NIH is forgetting this, and not just for dubious therapies beloved of antivaccinationists. It’s a problem in the entire field of “complementary and alternative medicine” clinical trials. Hence, we have $30 million spent on a huge, poorly designed multicenter trial testing chelation therapy in cardiovascular disease (for which many of the centers were chelation mills who misrepresented the study) and randomized clinical studies funded by the NIH for the Gonzalez regimen for pancreatic cancer based on a tiny, single-arm retrospective trial riddled with selection bias and questions about whether a couple of the patients even had pancreatic cancer in the first place. That’s why I saw the greenlighting of the chelation trial for autism to be a symptom of this new mentality, in which we test whatever woo adherents believe in not because it’s good science but because the woo-meisters clamor for it.
I only hope the rejection of this trial is a sign that the NIH is moving away from pandering to the activists and towards concentrating on using good science to decide what trials to fund.
Meanwhile, over at AoA, it is very much like a cult. In fact, it is a cult, a cult of antivaccinationism. They know that it absolutely, positively has to be the vaccines, and nothing will persuade them otherwise. The ludicrous conspiracy-mongering in response to the decision to axe this study is completely consistent with cult behavior.
Finally, I know why these “recovery” stories never get written up as case reports for peer-reviewed medical journals. (Now that‘s what a real anecdote looks like in scientific medicine.) They don’t get written up because they don’t meet even the minimal criteria accepted by medical scientists to be accepted.
Kev listed:
I would add that it was probably canceled because:
d)the powers that let this travesty through the door at the NIMH (thank you Tom Insel, and thank you Susan Swedo) knew and know the only reason they had considered doing it to begin with was because of pressure from some idiot politician(s) who were backing some self-centered and greedy parents who had a hope that they and/or their friends would win in a toxic-tort lawsuit. These parents with the advice of their lawyers, no doubt, were trying to get the NIMH to lend credibility to the cases cooked by these same ambulance chasers.
I have a good friend who chelated her son, and who was part of this lawsuit. She is neither self-centered nor greedy. She has, however, been told in no uncertain terms by legitimate members of the AAP that her autistic son has mercury poisoning, and that chelation works.
Can we please start going after the Drs Megson and Mumper of the world, instead of the naive, desperate, hopeful parents who believe what they say?
Bink,
The parents who were walking into the NIH and CDC and throwing around demands that resulted in this idiotic chelation study being considered are not merely gullible patients of some DAN! doc. They are greedy and they are selfish. These are the ones I was describing. I was specifying parents who were backed by politicians, as in the politician calls up someone at the NIMH or CDC and says, “you better listen to Mrs. X or Mr. Z.” This IS what happened and is part of what explains how the mercury parents got so much power at a high level in various gov’t agencies.
I was not thinking of parents like your friend, unless she happens also to be a “mover and shaker” among the mercury parents.
a) There is no evidence metals cause autism
b) There is evidence chelation can cause injury
c) There is therefore what any rational person would see as an unacceptable amount of risk to children.
d) No definitive evidence that current chelators even cross the blood brain barrier
e) No definitive evidence that current chelators are removing heavy metals from the brain
f) Even if they did work, no definitive evidence that neurological damage caused by heavy metals would be reversible
g) Chelators might redistribute heavy metals into the brain
h) No definitive evidence that autistic children have more mercury in the brain or body in the first place
i) No definitive evidence of inability to excrete heavy metals – only hypotheses (”poor excretor”, “temporary poor excretor”)
Speaking of AofA: You may have noticed that they’re plugging a congressional forum next week on vaccines and autism sponsored by Rep. Carolyn Maloney, who appears to be close with Jenny McCarthy and Co. They’re trying to get their minions to hit up members of Congress to attend the event.
I thought i’d do some congressional outreach of my own, just to make sure the senators and representatives know that the forum will prominently feature an organization whose treasurer recently said, “Death may be better than autism in some cases.”
Funny thing, though. I heard back from a rep for one of the senators listed on the site as a confirmed attendee. She said unequivocally that the senator “isn’t attending the forum you referred to. It’s actually the first we’ve heard of it.”
You don’t suppose someone might be trying to plump up the numbers?
(At any rate, for those in the U.S., it might be worth cordially contacting your own local members of Congress to make sure they know the full story. Kirby and Blaxill are the featured speakers.)
Here’s what I sent:
Dear [Senator] [Representative]
You will have received, or will shortly receive, an invitation from Rep. Carolyn Maloney (D-NY) to attend a “special briefing” Wednesday, September 24 at 2:00 PM 210 Cannon House Office Building on “recent developments in the vaccine-autism debate.”
The briefing will feature two speakers: David Kirby and Mark Blaxill. Mr. Kirby has no scientific training. His “credentials” as an autism expert are that he published a shoddily-researched book, “Evidence of Harm”, with financial backing from the anti-vaccination advocacy group, Safe Minds. Mr. Blaxill is a co-founder of Safe Minds.
I strongly urge you to decline the invitation. There is no “vaccine- autism debate.” As numerous studies have shown, there is no evidence that vaccination is in any way causal in autism. It is a failed hypothesis. The continued focus on this failed hypothesis are hurting children with autism and their families.
Peter Hotez is the Walter G. Ross Professor and chairman of Microbiology and Tropical Medicine at George Washington University School of Medicine. He is also the father of an autistic daughter, now a teenager.
Paul Offit interviewed Dr. Hotez, and quotes him in Offit’s new book, Autism’s False Prophets*,
“One of the reasons that I believe that we are at least ten years behind in providing the right kind of services for autistic children is because of the distraction that this whole vaccine-autism debate has caused. It’s led to a lack of focus on what’s really needed. I get very angry at a lot of these autism groups, like Safe Minds. It’s so difficult for me not to want to shake them and say, ‘Don’t you realize that you’re really doing a disservice to parents, not a service?’ And they’re so self-righteous. They don’t speak for all autistic parents. They’re certainly not speaking for me.”
*Paul Offit, MD: Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure (2008) p. 227.
Sincerely,
Find your senator here:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
Find your congressional representative here (must know your zip + 4)
http://www.house.gov/