more from Mr. Butterbar

[Guest guest]

Please feel free to respond to him again:

Date: Wed, 1 Mar 2006 01:55:02 -0800 (PST)

From: Send an Instant Message " Mr Butterbur " <not.athome@...>

Subject: Re: chelation

" Debi H. " <fightingautism@...>

Dear Ms. Debi H.

If you post views in a public forum then you should eventually expect

a response from persons unknown to you, asking for clarification. As

such, your priniciples, positions, and beliefs may, in fact, even be

challenged.

Your response indicates that you grasped some on the principles of

obtaining empirical (experimental) evidence, that any such evidence

must be peer-reviewed to criticize the data collection methods, data

analysis, and conclusions; and optimally, replicated for reliability.

So many people, sadly enough, do not have such understanding, and

spend years chasing down empty promises. For example, the promises of

the Tomatis Method or the Berard auditory integration methods for

treating autism, and subsequently, the glowing anecdotal reports of

benefit. Coffee enemas in Mexico for brain cancer are another extreme

example.

As for chelation, it has proven benefit for removing heavy metals

(also for depleting other useful minerals). But, many parents are

freely willing to assume that chelation will somehow dramatically

improve symptoms of autism, and it's safe to presume that a fair

number of parents are looking for an outright cure.

Such desires are so strong that well-intentioned parents are willing

to restrain their children for 40+ treatments from misguided health

providers who have " scientific evidence " . If I was such a child, I

would immediatly learn to associate chelation " treatments " with a lot

of physical pain (needles). As for " safety " , yes, I agree with your

statement that a treatement done " safely " is " safe " . My issue is with

the discomfort (pain).

So, dear lady, I don't endeavour to change your mind about any

treatment that has convinced you of " scientific " benefit. I'm sure you

love your child as deeply as any parent can, and expend enormous

resources in the effort to help him/her.

But I do wonder, if one observes improvment in achild over 2-3 years

of chelation, can you attribute it to a reduction of a miniscule

amount of mecury (if in fact mercury is present at a toxic level) or

would perceptions of improvement result in the child incidentally,

from maturity plus all the love and treatments and social interactions

you provide over the same period? For when a child is their as their

own " control " then it becomes almost impossible to state that any

observed behavioral change occurred solely as the result of the

treatment, when in fact, said child also benefits from the other

interventions previously mentioned. And if there is no proven benefit,

why do it?

One way to " prove it " (rather draconian) would be to take a large

group of autistic children with proven heavy-metal toxicity and

randomly assign each to a control or experimental group, one treated

with chelation and the other with plain plasma or saline, and the

outcome determined after several years of such treatments. Or, include

a third group of autistic children and provide no therapy at all, but

stick them with the needle anyway, while the other two groups recieve

their usual behavioral + social interventions. Is such a situation,

one would have empirical, scientific evidence. But would it be done?

Of course not, as the potential harm is indeed very tangible for the

two unwitting control groups. The downside is that then, there is no

way to collect the " scientific evidence " that is so desperately

required. So, here is one reason why so many glowing reports about

perceived benefit from a questionable treatment are anecdotal,and why

parents have to be so very watchful and careful for their children,

especially when the treatments are expensive or exotic-sounding. A

" treatment du jour " .

In closing, please don't presume that since I am a stranger to you

(and who may seem irksome by addressing issues if my point of view

does not coincide with yours) that I am entirely ignorant or devoid of

training or credentials on the topic. I have no desire to be

confrontational or ask you to defend a position. People learn from one

another in a dialogue, but I have gone on longer than intended. I did

not intend to launch on a discussion of empirical methodology.

My concern was with the pain associated with the procedure. Since

there is undoubtably pain from sticking a needle into a vein,

repeatedly, over years, my position is that I don't think that

chelation treatment is entirely benign. Given the lack of empirical

evidence of benefit, it may very well be unneccessary.

It would be nice to be able to ask the children their point of view.

Peace to you, too.

Mr. Butterbur