CFS, autism, glutathione, and methylation

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jan 6, 2006.

  1. tansy

    tansy New Member

    As posted by Rich Van Konynenburg, Ph.D. in the Co cure archives

    **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 CFSFMExperimental 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 James 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 James, 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 autism research institute (URL removed)

    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 while 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.**
  2. Jen102

    Jen102 New Member

    i am getting 2000mg of glutathione 3x/week for cfs,fms,mcs. it is the one thing that has clearly helped me survive and is helping me to make steps towards recovery. I can't say enough about glutathione and its recuperative powers for me. i think it is absolutely true that some of us have trouble making or using glutathione, and may have other genetic "variations" at the same time, such as described herein. great smokies does testing for these variations. thanks for posting this--hadn't seen it, tho i've seen other work by the same author. jen102
  3. pepper

    pepper New Member

    I have been taking N-acetyl cysteine which is the precursor to glutathione since I no longer get weekly IV's with glutathione. I stopped taking it yesterday since I suspect that it was causing me an unbearable detox. I will try adding it again when I recover and see what happens. It is obviously important.

    I am wondering why my CFS doctor is getting away from treating CFS and is concentrating on autism! You'd think that he could specialize in treating both.

    Pepper
  4. tansy

    tansy New Member

    only it took me a long time to realise it. Now I use lipoic acid and am trying out the supps for methylation. Also using molybdenum (sp?)to help with sulphur. Until my acupuncture Tx 6 weeks and 2 weeks ago I felt these were helping.

    Not sure about the TMG, using it on and off atm. I have postponed trying taurine because I had problems with it a few years ago, need to get other problems under control first.

    love, Tansy

  5. minimonkey

    minimonkey New Member

    Great information! I've suspected for a long time that these dds and autism may have a link...
  6. tansy

    tansy New Member

    This may not apply to everyone with these DDs but I feel everyone should be aware of it.

    love, Tansy
  7. pepper

    pepper New Member

    I will research molybdenum but am curious as to what it does re sulphur. One of the few things that has really helped me over the last 13 yrs is precipitated suphur baths. If it weren't for the stink, I would take one every day.

    Pepper
  8. TristansMom

    TristansMom New Member

    As a woman dx'd with Fibro this year I have done research on Fibromyalgia and have read the message boards here. There are several symptoms and treatments that are strikingly similar to autism. I know this because my son was also dx'd with autism this past year. I personally have no doubt that these disorders are connected somehow. What I can say is that the DAN! protocol is very useful in helping children on the spectrum. My son has shown great improvement on the GF/CF diet.
  9. tansy

    tansy New Member

    in the article Stormyskye posted in her topic titled "Molybdenum - this is new, to me anyway" That explains it's role and where supplementing with molybdemun might be indicated very well. Since it can help with the die off from candida, it provides an additional Tx option.

    Unlike you I had problems with sulphurs, including MSM, so had to limit my intake, N Acetyl Cysteine was making things worse but not in a therapeutic way. The only sulphur amino acid I could tolerate was lipoic acid.

    When my amalgams were removed they were done so incorrectly, I was given methionine and cysteine and felt very unwell on them. That was many years ago. Neither my doctor, nor I, understood the significance of problems with those AAs on top of raised mercury levels back then.

    love, Tansy
  10. tansy

    tansy New Member

    this diet is helping your son.

    Professor Malcolm Hooper in the UK learned about ME/CFS/CFIDS through his research on autism and GWS/I. He acknowledges both the overaps and the differences.

    love, Tansy
  11. Cromwell

    Cromwell New Member


    I know several moms with autistic kids who have CFS/FM as well as we joke it is the stress!!! However, those with autistic kids know that the kids have occular migraines(see colors and lights bother them) sensitive to fabrics and touch, ache easily have often comorbid condition of a sort of arthritis-my son has always coped with spinning rooms and not being able to bend his back very far. This is of great interest to me and I do wonder if link is genetic and my mom had "fibrositis" as they called it and the occular migraines/vertigo. I'd love to hear from those of you with autistic kids on this diet as I read about it and have wondered.
    Cromwell
  12. lbok

    lbok New Member

    I noticed the link coincedently being on several autism message boards how many moms have CFS/MS/or autoimmune disorders. I have often wondered if this was the result of the stress or if the stress just exasperated an underlying condition. By exasperated, I mean not "caused" the condition to appear as some moms may have had signs before. We have not tried the diet, but the informaiton is intriguing.
  13. TristansMom

    TristansMom New Member

    The diet does not work for all kids on the spectrum but it would be worthwhile to try to remove these things and see the childs reaction since it is non invasive. My son shows a tremendous difference off of both of these and he also no longer has chronic diarhea.