Noah,
No one in the world wants better research on therapy into autism
treatments more than the parents. I'm not quite sure who
is "behooved" to get this work done, but frankly we are working so
hard to retain the respectability of ANY research in this area that
reaching downstream to treatment studies is one of the hardest things
of all to get done. Practically speaking, we have to establish
credibility for the theory before we can reach for clinical trials.
so your suggestion, although I believe it's correct, puts the cart
before the horse in a funding sense.
But in terms of the research realities, the establishment autism
parent organizations (those with the money) have scientific review
boards with non-parent scientists who don't want to touch the mercury
issue with a ten foot pole, let alone propose studies to treat kids
with chelators that (whisper, whisper) might cause horrible adverse
effects like renal failure. The organizations that are willing to
declare their support for even investigating the mercury hypothesis
don't have the resources to pursue the agenda we all agree makes
sense. And when the IOM comes out and says, "don't do more research
into any vaccine theory", it doesn't help the scientific process very
much.
But if you'd like to make a contribution towards a chelation trial,
we would certainly welcome it!
Mark
--- In EOHarm@yahoogroups.com, "Noah_Raizman" <nmr2002@c...> wrote:
>
> Dear Mark,
>
> I am familiar with the Bradstreet article. I am very glad that Safe
> Minds is trying to support this research. What I think is necessary
> are comparison studies of two protocols and a retrospective study
> comparing chelated children with non-chelated children. Though a
> typical RCT would be difficult because of the inability to
> effectively blind and the absence of a placebo group, randomization
> is easy and the treatment protocols would be easy to administer by
> those practitioners already doing the therapy. What would be
> difficult would be controlling for other interventions children use
> and coordinating this in a multi-center fashion. This requires part
> time work on the part of a single coordinator. I have initiated and
> worked on several similar studies in this research year alone,
> working part time. I know capable undergraduates who could put it
all
> together in summer research project.
>
> The retrospective is a little harder, but somehow there needs to be
> some sort of data that's not anecdotal suggesting that chelation is
> better than no chelation. If, of course, it is...
>
> BTW - this is hard work that requires dedicated and knowledgable
> people, but I think that it behooves the community of autistic
> parents to see that this research is done. Would be happy to talk
> research structure offlist.
> :)
> N.
>
>
> --- In EOHarm@yahoogroups.com, "blaxillmark" <blaxill.mark@b...>
> wrote:
> > Noah,
> > Please define "not much." These studies, if done properly and in
> the
> > time frame required to do them safely (many parents use a 3 days
on
> > 11 days off schedule and chelate for months if not years) take a
> > great deal of time and so would not be inexpensive in terms of
time
> > and effort. So given that the entire potential need for chelation
> was
> > defined in 2000, we have not really had much time to do a proper
> > controlled study. But the absenec of such work is a major
problem,
> > espeically when there is a great discussion about different
> > approaches to chelation. We desperately need more and better
> science,
> > but recruitng scientists, funding good projects, completing the
> work
> > and publishing the results is a large job and you should not
> > underestimate it. We are trying to sponsor a wide range of
science
> at
> > Safe Minds and we are maasively underpowered to get the work done.
> >
> > Also, FWIW, there is at least one chelation study by Bradstreet
> that
> > measure mercury excretion in autistics and controls over a short
> time
> > frame. It showed a clear elevation in Hg excretion in the autistc
> > group. But this did not attempt to measure the success of the
> > treatment.
> > Mark Blaxill
> >