Mothers with CFS who have children with autism?

[Guest guest]

Hello, everyone.

My name is Rich Van Konynenburg. I just joined this group this

morning. I am an independent researcher, and have been studying CFS

for the past ten years. For several years, I focused primarily on

the role of glutathione depletion in CFS. I realize that this is a

different orientation from the neuroimmune concept, but I believe

that they are related. In fact, I presented a poster paper at the

2004 meeting of the American Association for Chronic Fatigue

Syndrome that discussed these connections. It can be found here:

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

In this paper I discussed, among other things, the effects of

glutathione depletion on suppression of the immune system and

reactivation of latent viral infections. I believe this might be a

connection between the interest of Dr. Goldberg and this group and

my own research.

In late 2004, a paper was published by S. Jill et al. that

showed that glutathione was also depleted in autism, that it was

linked to a block in the methylation cycle, and that this block

could be removed by the use of methylcobalamin, folinic acid and

TMG, allowing glutathione to rise back into the normal range. Later

work has shown that these abnormalities are associated with genetic

variations (polymorphisms or SNPs) in enzymes and other proteins

that impact the methylation cycle.

When I read that paper, I began to suspect that these same genetic

and biochemical issues are involved in CFS. At that point, I wrote

the following article, which I sent to several CFS internet groups:

http://www.cfsresearch.org/cfs/research/treatment/20.htm

Several people with CFS have now voluntarily chosen to pursue the

treatment approach used by the DAN! project and also the approach of

Dr. Amy Yasko. We are still in the early stages of finding out how

well this will work. People doing this are reporting their results

to the group, also in .

Incidentally, as I have learned more about Dr. Yasko's work, I think

that another connection of this vicious circle (involving

glutathione depletion and methylation cycle block) to the immune

system is that this mechanism impacts the folate metabolism, which

interferes with the synthesis of new DNA and RNA, which are

essential for the proliferation of lymphocytes, which in turn is

necessary to mount an effective cell-mediated immune response.

Thus, I think there are clear connections between this genetic and

biochemical mechanism and the immune suppression and viral infection

phenomena that Dr. Goldberg and the organization have

identified and emphasized.

One of the people who read my article and became interested in the

connection between autism and CFS was Laurette Janak, who was a

coauthor on the S. Jill et al. paper that I mentioned above.

She has noted that there appear to be quite a few mothers of

autistic children who have CFS themselves. She contacted me, and we

have been interacting about this topic for the past few days,

finding more and more parallels between these two disorders. In the

course of this, I recalled Dr. Goldberg's pointing out this

connection many years ago. At that time, I knew very little about

autism, and I think there was also not much fundamental

understanding of the genetics and biochemistry of autism, so I

didn't pursue the connection at that time. However, in the past

several years, much more has been learned about autism, and now I

think we are beginning to understand the connections at a more

fundamental level.

The reason I am writing to this group now is that there is a

possibility that some research may be done looking at some

substances in the blood of autism mothers who have CFS themselves.

These would be the same substances that were studied in the research

reported above on autistic children. If this work is done and comes

out the way I think it will, I believe it will improve our

understanding of these disorders at a very fundamental level, and

will also provide a basis for more effective treatment of CFS,

getting to root causes rather than treating the wide variety of

individual symtpoms, as has been the practice in the past.

So I'm wondering if there are mothers of autistic spectrum children

in this group who have been diagnosed themselves with CFS (or if

people here know mothers who fit this description), using the

recognized international Fukuda et al. criteria for CFS as developed

by a committee assembled at the Centers for Disease Control and

Prevention in 1994. If there are such mothers here, I'm wondering

if you would be willing to consider participating in such a study,

if it could be done. Please note that I am not promising that this

will happen. We are in the early stages of considering this, and

one of the considerations is whether there are mothers who would be

interested in participating. It would involve supplying blood

samples for testing. So I'm really asking whether there are mothers

here who might be candidates for such a study, or if you know of any

who are not on this list, and whether they would consider

partipating. I'm not asking for a commitment at this time, just a

show of interest.

Thank you.

Rich Van Konynenburg, Ph.D.