CFS and DAN! treatments for autism

[Guest guest]

Hi, all.

I am posting the following message to several CFS internet lists,

based on the experiences that many of you have shared with me.

Thank you, and I hope this really flies:

I have been researching chronic fatigue syndrome for over eight

years. As regular readers may recall, I had developed a hypothesis

for the pathogenesis of chronic fatigue syndrome that prominently

featured the depletion of glutathione, and I presented a poster

paper on it at the AACFS (now the IACFS) meeting in October, 2004,

in Madison, Wisconsin. This paper can be found at

http://www.cfsresearch.org/cfs/research/treatment/15.htm

Anecdotal experience of people in the internet

group and others who took my hypothesis seriously and acted upon it

suggested that while some were able to raise their glutathione

levels by various means and experienced benefit from doing so,

others were not able to do so. At the time of writing my poster

paper, I was aware of this, and I acknowledged in the conclusions of

the paper that there appeared to be things that were blocking the

raising of glutathione in CFS. At that time, I was not sure

specifically what they were. I also knew that there was evidence

for a genetic predisposition in CFS, but I did not know the details

of the genetic variations involved.

Since then, I became aware of the work of S. Jill et al. in

autism (Am J Clin Nutr. 2004 Dec;80(6):1611-7). They found that

glutathione was also depleted in autistic children, that this

resulted from a partial block in the methylation (also called

methionine) cycle, that this partial block resulted in part from

genetic variations in the genes for certain enzymes and proteins

associated with the sulfur metabolism (I don't think the genetic

part is published yet), and that it interfered with the conversion

of methionine to cysteine, which is the rate-limiting amino acid for

the synthesis of glutathione. They found that by using certain

supplements they could lift the block in the methylation cycle and

restore the glutathione level.

In response to learning of this work, I became very interested in

possible parallels between chronic fatigue syndrome and autism. I

went on to attend the conference of the Defeat Autism Now! project

in Long Beach, California in October, 2005. As a result of this

experience, I became convinced that the genetic predisposition found

in autism must be the same or similar to that in a major subset of

chronic fatigue syndrome, and that the resulting biochemical

abnormalities were also the same or similar. As far as I know, the

genetic variations in people with CFS have not yet been studied in

detail or published, but I am optimistic that this will occur soon,

because of the rapid advances in the technology for doing so, and

the current active interest of at least three groups in the U.S. and

the U.K. in genomic aspects of CFS.

There are obviously also major differences between chronic fatigue

syndrome and autism. I believe that these result primarily from the

different ages of onset. Autistic children experience onset early

in life, before their brains are fully developed. I believe that

this gives rise to the very different brain-related symptoms seen in

autistic children from those seen in adults with CFS. However,

there are many similarities in the symptomatology and the

biochemistry of these two disorders as well, including oxidative

stress, buildup of toxins, immune response shift to Th2, and gut

problems, for examples.

The triggering factors for autism and chronic fatigue syndrome are

also largely different. There appears to be substantial evidence

now that vaccinations (containing either a mercury-based

preservative or live viruses, many given at the same time) were

responsible for triggering many of the cases of autism in

genetically-susceptible children. In CFS, a variety of triggering

factors (physical, chemical, biological, or psychological/emotional)

have been shown to be involved in various cases. All of these

factors have in common the tendency to deplete glutathione. It

appears that once glutathione drops sufficiently in a genetically

susceptible person, the methylation cycle goes down, and the result

is a depletion of several important metabolites in the sulfur

metabolism, including S-adenosylmethionine (SAMe), cysteine,

glutathione, taurine and sulfate. The depletion in these

metabolites causes an avalanche of pathogenesis, since they all have

very important functions in the body, and I think that much of this

pathogenesis is common between autism and CFS. In autism, I think

the loss of methylation capacity because of the drop in SAMe is

responsible for much of the interference with normal brain

development.

I think that the reason why the people who have developed CFS as

adults did not develop autism as children (even though I suspect

that they have the same or similar genetic predisposition) is that

when they were children, not as many vaccinations were required.

The schedule of vaccinations required for children in the U.S. has

grown substantially in the past two or three decades, as has the

incidence of autism. I think this is also true in the U.K.

My main message is that a great deal has already been worked out in

autism by the people in the Defeat Autism Now! project, and that I

believe that the CFS community would benefit greatly by looking

carefully at what they have already done. They have found

supplements that will compensate for the genetic variations and

correct these biochemical irregularities. They are also detoxing

heavy metals. The results in many autistic children have been

astounding.

So I want to encourage everyone who has an interest in CFS to look

at the results of the DAN! project in autism. You can view videos

of the talks given at the latest two DAN! conferences on the

internet at no cost (unless you are paying for the internet time!).

Go to this site:

http://www.danwebcast.com

You can choose either the later Long Beach conference or the earlier

Boston conference. They cover much of the same material, but both

are worthwhile to watch. If you want to see a good explanation of

the methylation cycle research, go to the Boston meeting first, so

you will be able to view the talk by Jill , who did not attend

the Long Beach meeting.

After selecting one of the conferences, go to the lower left and

register. This is free. They will email a password to you right

away, and then you can choose a talk to watch.

Beyond this, I also want to recommend a book. This is a new book

(Sept. 2005). It is by Jon Pangborn, Ph.D. and Sydney Baker, M.D.,

a biochemist and an autism clinician, respectively. It is available

on Amazon for people within the U.S. For people outside the U.S.,

it can be obtained from the following website by means of PayPal:

http://www.autismresearchinstitute.com

The cost for the book is $30 U.S.

This is an excellent book. It is a reference book, full of good

information and good science, explained clearly. This book deals

very practically with developing a treatment program for an

individual child. I think that most of it will turn out to apply

directly to adults with CFS as well.

Although I have been suggesting consideration of the DAN! treatments

to people with CFS for only about two months, and it is too soon to

draw conclusions, early feedback is very encouraging. While I am

going out on a limb in announcing this on Co-Cure now, I don't want

to wait any longer, because I think this could help a lot of

people. Of course, we should all keep in mind that with the current

case definition of CFS we have a very heterogeneous population, and

the DAN! treatments may not help all PWCs, but I am convinced that

they will help a substantial subset. So I want to encourage you to

look into this in the strongest way I can. It could be the answer

for many of you.

Rich Van Konynenburg, Ph.D.