Pressure to Study Chelation?
July 16, 2008 by Kristina Chew, PhD
Filed under Health
In the July 14th Nature is an article about the NIMH chelation study that was put on hold due to safety concerns. NIMH director, Thomas Insel, M.D., says that, due to children being involved, and because the study “carries more than minimal risk and offers no demonstrable benefit to the participants,” it has been referred to the US Department of Health and Human Services panel for ethics approval.
Nature also points out that the very premise of the study rests on an unproven hypothesis about autism being caused by mercury poisoning. While more and more scientific evidence disputes a link between mercury and autism, a tour ’round the Internet suggests that many believe in a link, whatever the science says:
Others argue that the study doesn’t make scientific sense because autism has not been documented as a symptom of high-dose mercury poisoning and that, even if it were, the damage that mercury does to cells is permanent and not reversible; chelation simply prevents additional harm. They say that the NIMH is bowing to political pressure because a growing number of parents with children who have autism use chelation therapy or want to use it. NIMH director Tom Insel denies pandering to families and says that the idea for the study “came up in the first place because we were getting reports that this was a therapy in broad use and there were very substantial questions about both its efficacy and its safety”.
Dr. Insel has been elsewhere quoted as saying “‘So many moms have said, ‘It’s saved my kids’” (though hardly every mom, including this one). It would be good to learn about the “reports” that Dr. Insel has been getting and about how “broad” the use of chelation actually is. Some are describing Dr. Insel as “advocating” for testing chelation therapy, due to being “pressured” by some parents of autistic children.
Louis Cooper, a vaccine expert and former president of the American Academy of Pediatrics, states that “a well-designed study” of chelation in autistic children with autism would indeed “respond to these parents’ deeply held beliefs in the most careful, ethical way. Such a study would include only the children of parents who were “already determined to try chelation.”
The thought occurs to me: How many parents have talked about using their chelation to “treat” an autistic child and have reported that it did not work?
In fact… how many parents have talked about spending lots of money on any kind of treatment for autism that did not work? There is more psychology in autism treatments than anything else. For both parent and kid.
I have found that just the attention and care given to a child while submitting them to whatever treatment, has a good effect on the child (unless, of course, the treatment is in itself harsh and painful and physically or emotionally damaging). The hope and desperate want of the parents to see some improvement somehow transfers the confidence to the child they so desperately need, and somehow, voilá, they “get better”.
“Play therapy” has already been coined (how sad that even play must now be called a form of therapy, and charged for). I am waiting for “love therapy” and “hope therapy” and “give your child some confidence damnit therapy” to get onto the charge sheets.
And I would LOVE for some placebo treatments to be used in the chelation therapy research, if this horrible project ever gets approved. It would be wonderful to actually have proof of this phenomena.
A lot of love therapy going on here, I guess you could say……. I will admit to spending too many $$$ on bottles of goo (literally—this stuff) once. Flintstones chewables are preferable. (The man in the front office for the DAN! practitioner we were then seeing himself referred to this supplement as made in “vats.”)
Unfortunately I don’t think that a study would change those parents’ minds even if it proved absolutely that chelation was not only dangerous, but didn’t work. One of the mailing lists that I’m on (while extremely helpful in some ways), is full of DAN parents, and most of them are chelating their kids right now. Just this week two other parents decided to chelate because their kids weren’t “progressing” quickly enough. There are a few parents on the list who have said that they did chelation and it didn’t work, but they actually blamed the lack of “cure” on their children.
It’s extremely frustrating, because science doesn’t change anyone’s mind who already has that type of mindset…at least not in my experience. While it would be great to have a study that would either prove or disprove the theory, in the long run, I don’t think that it would do much good.
We have tried all kinds of stuff I don’t want to admit too. I am glad we moved beyond that phase. Positive interaction, time with M and lots of positive one on one education has given us the best results. Potions and lotions have never helped. Medications…yes..we have had success with a few. Chelation, I would not do it.
What a sad state of affairs.
Adi, Brad gets one hour a week of baby sitting…er…play therapy. Actually, I like the play therapist a lot and Brad goes nuts (in a good way) when she comes, but it is pretty silly that the state would pay for it.
Nodding in agreement to you all.
I think one reason my son is so happy is because of all the ‘love therapy’ he gets, not only from me, but also from close friends and his teachers. I realize he’s only 7 and no major bullying instances have ocurred at school, but Pete has a great sense of self-worth that I feel could not exist is he was being bombarded with messages that he’s not good enough the way he is.
Jen, I’m amazed that parents blame their kids when chelation doesn’t “work.” Ugh.
I’m freaked by the role the scientists are playing in this. If Insel is really supporting or advocating for the study, that shows to me that our systems of expertise are broken. We’ve stepped into the minefield of testing any relationship just because someone out there believes it might exist, with no scientific justification. It’s scary.
And chelation is much worse than testing some other hypothesis with no link — like whether waving magic wands over the person’s toes helps, ’cause it’s dangerous.
Jen already said it for me: a study that finds chelation does no good (and in fact does harm) isn’t going to change the minds of any of the chelation advocates. They’ll just say the study was biased or rigged. They don’t trust science already. That’s why they’ve bought into chelation in the first place.