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Autism and XMRV

Discussion in 'XMRV Research and Replication Studies' started by Summer, Oct 12, 2009.

  1. JillBohr

    JillBohr Senior Member

    Columbus, OH
    IACC and XMRV

    There was an IACC (Interagency Autism Coordinating Committee) meeting on October 23rd and a parent (Cheryl Emory) spoke eloquently on this topic. You can see her at around 2 hours and 43 minutes on the video here:


    She spoke about the discovery of XMRV and how we should further investigate the link to autism. Thomas Insel, the director and chair, mentioned that the intramural committee was "on the job" within 24 hours of the XMRV news being released. What that means, I do not know. I have not heard a word. I also wrote autism speaks but I did not even get a response back and there has been nothing posted on their website regarding this subject. Most of the parents that I speak to are not even interested in this which boggles the mind. I guess their child having a retrovius is more scary than autism itself. Not to me, however. I want them to have a life and be seizure free.
  2. Frickly

    Frickly Senior Member


    I mentioned the XMRV study as it relates to autism to a group of parents at my son's social skills group. Blank stare......silence.....subject changed. It was very uncomfortable to say the least and I won't be doing that again. I just don't think many people understand the significance of this research as it relates to autism. They may not even know what a retrovirus is. I am hopeful that this will change.
  3. amstanley

    amstanley Guest

    Causes of Autism

    There are gene studies that have been conducted at Sick Kids Toronto, at CHOP in Philly, and elsewhere that implicate literally hundreds of genes as causes of Autism.

    These genes form collectively pathways that mediate the form of the neural connections in the brain, including the density, shape, size, and structure of the neurons and their connections.

    Disrupt any two or three and you may result in a deficit situation resulting in a condition we would recognize as Autism, even though the actual means by which the deficit was created might vary entirely from child to child. This appears to be the case as, in the studies conducted, few if any genes identified appeared corrupted in more than a small percentage of those tested.

    Further, and this is very important as well, it seems that these, and any, genes, may be turned on or off by 'epigenetic' means, leading to the same results even though the DNA itself appears 'normal' and complete. Autism research has benefited greatly from Cancer research in this area, as epigenetic gene silencing now appears to be greatly involved the onset of many cancers.

    Finally, there was about a year ago a court case where a syndrome known as mitochondrial syndrome was identified as possibly having a contribution to autism onset. Mitochondrial syndrome is an impairment in the ability of cells to convert raw materials into energy. At the time there was a pulse of activity around this, only to, similiarly to the XMRV hypothesis, fade away. The mechanism for getting mitochondrial syndrome was never explained; it was assumed to be inherited.

    I lay this out as I think it important for you, and all of us, to understand that the Fragile X statement you are making is only narrowly accurate. Yes, if you have Fragile X it would explain completely why you have Autism, and in the case of your daughter this may be the explanation. But many many people, like my daughter, have Autism that is not caused by Fragile X, and the best science available suggests that some of these cases are of genetic providence, and some of these, though not all, may be inherited, some may result from the appearance of the spontaneous appearance of single nucleotide polymorphisms (SNPs) within the network of genes which regulate the development and maintenance of the neural pathways in our brains, and some may arise as a result of epigenetic silencing of these genes...
  4. amstanley

    amstanley Guest

    The web page for the IACC is here: http://iacc.hhs.gov/events/

    There is a more recent video from Nov 10, and a meeting was apparently held 2 days ago. The agenda is posted, I'm off to look at it in a minute.

    I have emailed Dr. Insel tonight asking for information regarding research activities related to proving or disposing of the hypothesized link between XMRV and Autism.

    Sent the same message to research@autismspeaks as well.
    Be interesting to see what kind of response is forthcoming...
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama

    I can't help but to point out that CFS also was shown to have normal genes that were activated abnormally. It was immune system genes, though.

    Also, CFs people also have mitochondrial problems. I remember Komaroff saying he thought it was neurological and then he had to admit there is the cellular metabolic problems also.

    So, this leads me to believe that XMRV could be going into our DNA and messing it up. Maybe it depends on where on the DNA it inserts itself as to which of the illnesses you develop. May depend on the development level (I don't think adults have sudden onset autism, whereas CFs develops commonly in mid 30s.)

  6. Marylib

    Marylib Senior Member

    New Zealand
    Can anyone help me get some info together?

    My nephew will be welcoming their first son into the world end of January.

    I have ME/CFS, one sis has fibromyalgia, brother has ADD (for real!), other sis has cancer.

    So it is possible that we would be XMRV positive.

    I need to get some info together to present to my nephew to support my suggestion that they look for an alternate vaccination schedule for the baby. Andrea Whittemore told me about this and strongly recommended I urge them to do this.

    My nephew is totally unaware of any worries in this regard and their doctor is highly likely to be ingnorant as well and will commence with the usual CDC vaccination schedule.

    So can anyone help me gather info for him? It is such early days that we can't yet pinpoint a link between his family's illnesses and possible autism, but we want to try to make him aware.

    Thanks so much for anything you can point me toward.
  7. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    @amstanley, thanks very much for sharing your expertise. There has been a lot of talk about epigenetics around here, too; many of the things you mention seem to be elements of CFS also. It's really heartening to me to think that progress with our illness might result in new insight into autism. :)
  8. richvank

    richvank Senior Member

    Hi, all.

    This article may be of interest to people on this thread. It goes back a few years, but it was published in the Townsend Letter, and it reports on my initial recognition that CFS and autism are linked by a common biochemical feature: a partial block in the methylation cycle, combined with glutathione depletion. It remains to be learned whether XMRV starts this pathogenesis process out, or whether it becomes activated because of immune dysfunction brought on by this pathogenesis process.


    February 21, 2006

    Chronic Fatigue Syndrome and Autism

    Richard A. Van Konynenburg, Ph.D.

    For the past ten years I have been studying chronic fatigue syndrome as an independent researcher. Over the course of several years I developed a hypothesis for the pathogenesis of this disorder that prominently featured the depletion of glutathione. I presented a poster paper on this hypothesis at the AACFS (now the International Association for Chronic Fatigue Syndrome) meeting in October, 2004, in Madison, Wisconsin. This paper can be found at the following url:


    Anecdotal experience of people with CFS who acted upon my hypothesis 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 I wrote my poster paper, I was aware of this, and I acknowledged in the conclusions of the paper that there appeared to be factors 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.

    Shortly after that, I became aware of the work of S. Jill James et al. in autism (American Journal of Clinical Nutrition 2004 Dec; 80(6):1611-7). They found that glutathione was also depleted in autistic children, that this was associated with a partial block in the methylation cycle (also called the methionine cycle), that this partial block was associated with genetic variations in the genes for certain enzymes and other proteins associated with the sulfur metabolism, and that it interfered with the synthesis of glutathione. They also found that by using certain supplements (methylcobalamin, folinic acid and trimethylglycine) they could lift the block in the methylation cycle and restore the glutathione level.

    Upon learning of this work, I became very interested in possible parallels between chronic fatigue syndrome and autism. I attended the conference of the Defeat Autism Now! (DAN!) project in Long Beach, California in October, 2005, sponsored by the Autism Research Institute, headed by Dr. Bernard Rimland. As a result 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 chronic fatigue syndrome 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 because of 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 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 biochemistry and symptoms 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. Although this subject remains controversial, there appears to be substantial evidence that vaccinations (containing either a mercury-based preservative or live viruses, many given within a short period of time) were responsible for triggering many of the cases of autism in genetically-susceptible children (D. Geier and M.R. Geier, International Journal of Toxicology 2004 Nov-Dec; 23(6):369-76; and A.J. Wakefield, several publications beginning in 1997).
    In CFS, a variety of triggering factors (physical, chemical, biological, or psychological/emotional) have been found to be involved in various cases, as reviewed in my poster paper, cited above. All these factors have in common that they place a demand on glutathione.

    It appears that genetically susceptible persons are unable to maintain normal glutathione levels when the total demand for it is high, and that once glutathione drops sufficiently in a genetically susceptible person, the sulfur metabolism becomes disrupted. In many cases the methylation cycle (part of the sulfur metabolism) becomes partially blocked, and the result can be a depletion of some or all of several important sulfur-containing metabolites, including S-adenosylmethionine (SAMe), cysteine, glutathione, taurine and sulfate. A vicious circle is thus formed, and the depletion in these metabolites causes an avalanche of pathogenesis, since they all have very important functions in the body. I think that much of this pathogenesis is common between autism and CFS. In autism, the loss of methylation capacity because of the drop in SAMe appears to be responsible for much of the interference with normal brain development.

    There is also a major difference in the sex ratio between autism and
    CFS. In the book mentioned below, Dr. Jon Pangborn discusses possible
    reasons why autism is more prevalent in boys. In my poster paper, cited
    above, I suggested a hypothesis to explain the female dominance in the
    prevalence of CFS in adults.

    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 a 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 over the past two or three decades, as has the incidence of autism. This is also true in the U.K.

    Shortly after attending the DAN! conference, I also learned of the work of Dr. Amy Yasko, primarily in autism, but extending to a number of other disorders as well. Working independently of the DAN! project, Dr. Yasko develops her treatment recommendations by analyzing the specific gene variations in each patient. In addition to studying effects on the methylation cycle, Dr. Yasko has gone on to consider the effects on associated biochemistry, including folate metabolism, biopterin, the urea cycle and the synthesis of neurotransmitters.

    My main message is that a great deal has already been worked out in autism by the researchers and clinicians associated with the Defeat Autism Now! project, and also by Dr. Yasko, and that I believe that the CFS community would benefit greatly by looking carefully at what they have already done. The doctors associated with the DAN! project treat autism by the use of nutritional supplements that compensate for genetic mutations in the sulfur metabolism. These include such supplements as magnesium sulfate, taurine, molybdenum, vitamin B6 and its active form P5P, magnesium, methylcobalamin, folinic acid, trimethylglycine, and dimethylglycine. They also use certain diets, and they perform chelation treatments to remove heavy metals. The results in many autistic children have been astounding, as can be seen in the webcast cited below, where several are interviewed.

    Dr. Yasko, in cooperation with Dr. Garry Gordon, uses many of the same supplements as are used by the DAN! project doctors as well as some additional ones, including RNA supplements, and she is also reporting great success.

    So I want to encourage everyone who has an interest in CFS to look at the results of the DAN! project and of Dr. Amy Yasko in autism.

    To 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:


    You can choose the more recent 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 and hear 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 entitled Autism: Effective Biomedical Treatments. 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:


    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.

    In addition, I want to recommend the book by Amy Yasko entitled Genetic ByPass. It is available from the website


    as part of the "Nutrigenomics Educational Starter Packet." The price is $49.95. This is also an excellent book. It discusses treatments specifically tailored to the particular combinations of genetic variations found in different patients.

    I think these two books complement each other. I would recommend reading the Pangborn and Baker book first, as it provides a good basis for understanding the technical aspects of the genetics found in the Yasko book.

    Although I have been suggesting consideration of the DAN! treatments and the Yasko testing to people with CFS for only a short time, and it is too soon to draw conclusions, early feedback is very encouraging. While I am going out on a limb to some extent in announcing this 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 autism treatments will very likely not help everyone who has CFS, but I am convinced that they will help a substantial subset. So I want to encourage those who have CFS and those who treat it to look into this in the strongest way I can. It could be the answer for many of you.

    [Disclaimer: I have no financial interest in anything recommended in this article.]
  9. margib

    margib Senior Member

    Austin, TX
    Marylib, Congratulations on the baby who will be here in the New Year. I have a 5 year old & a 2 year old; my 5 year old had *some* vaccines, but I listened to my gut & stopped them soon after starting (she has no MMR, Hep B, varicella, etc., there seem to be more each year!). My 2 year old is not vaccinated & will not be. I have lots of articles, including sources, but they might be hard for me to cut & paste or email on the forum. You can email me at marg.burns@gmail.com or send me a PM w/ a different email, & I am happy to send them for you. FWIW, my 2 year old is healthier & has fewer "behavior" problems. I have never given her gluten or casein, in a mama-hysterical attempt to cover all my bases. Good luck!
  10. anne_likes_red

    anne_likes_red Senior Member

    I have a similar experience with my two.
    Knowing of, or suspecting at least, some bio-chemical similarities between ME/CFS and Autistic Spectrum Disorders (see Rich's post above for some important similarities) has made me super-cautious. Like Marg I had a strong gut feeling I shouldn't immunise. I was awake feeling sick half the night before the first one's MMR was due.
    Given my own health problems, and a very strong interest in children's health from having worked (as a nanny) for a pediatrician who specialised in Neuro Immune disorders, I felt a vaccine could possibly be a trigger for an ASD.
    I limit gluten and casein for them too...to maybe once a week...like Marg trying to cover bases :eek: and preserve their (so far) good health.

    In Nancy Klimas' lecture - I can't remember which part of the series - she paints a more positive picture for parent - child retrovirus transmission than I had dared hope. Fingers tightly crossed here.
  11. flybro

    flybro Senior Member

    Freshh Eyes

    My Doc not back till January, so should get a refferal, then prob about a 6weeks to 4months wait for appointment, my docs quite good and may try to put a rush on in.
  12. flybro

    flybro Senior Member

    Re:- vacinations


    I knew there was something wrong with my daughter before her first vaccination.

    My symptoms have quadrupled and have pretty much been deteriortaing since I had a tetanus booster 6/7 years ago. I also moved to a different county, and changed job at the same time, so there are other possibilties to this episode of mega symptoms.
  13. JillBohr

    JillBohr Senior Member

    Columbus, OH
    Lack of Understanding


    I can just see you there. I wish there were at least two of us there to explain what a retrovirus is. I posted to a yahoo groups list serve and one mother said "so what" our kids have all kinds of viruses including HHV6, CMV, etc. - there is nothing new here.
  14. Frickly

    Frickly Senior Member


    I sure needed you there at that moment. Sounds like the lady on the Yahoo group did not know what a retrovirus is either. It would be nice if they asked questions rather than totally dismissing it. Oh well....I should be used to it....its the same reaction I get if I mention I have CFS. I don't do that any more either.
  15. markmc20001

    markmc20001 Guest

    Thanks for this post Rich. I bet you are right-on again, at least for my situation.

    I developed CFS at a young age maybe 12 or earlier. Now I believe I have many austisic like symptoms, along with my CFS.

    All the social skills came easy for me when I was younger, I was a straight "A" student without doing homework. Very social and likable. Everything was easy.

    Then everything changed overnight, at age 12 or so. Espeically my social skills.

    Over time, things were tough, but I made it. Now, as my illness has progressed everything is close to impossible. can't wait from some real good treatment to be developed.
  16. Athene

    Athene ihateticks.me

    Thank you Mark

    Thank you for posting this excellent article Mark. I hadn't read this and it is fabulously useful for me and my son.

    I want to ask you about the "autism" traits and social skills thing that you mentioned developing at the age of 12. My son was diagnosed as autistic when he was very little (aged 2) and after I carried out some drastic dietary changes and heavy supplementation he developed into a "normal" kid. He is 4 now.

    He was very bad before - constant stimming, no speech, self harming. Now he could be classified as normal but I and still sometimes worried about his socialisation. He often refuses to play with other children and tell me he is happier on his own. He does play with other children when the mood takes him, but my impression is that he finds it taxing and as soon as he feel a but unwell he wants to be left alone. He is too young for me to be sure about anything, but I wonder, if you feel like it, could you go into a bit more detail about what you experienced in terms of losing social skills when you were a child? it might really help me to understand or help my son.

    Many thanks if you feel up to doing this.
  17. CBS

    CBS Senior Member



    I don't know if this has already been covered as this thread has gotten longer than I can go back a catch up on right now but I transcribed the following from Dr. Klimas' video presentation, section 7:

    I worked as a care coordinator/counselor trainer in a home for severely disabled autistic adults for years before coming down with CFS (acute infectious onset) three years after leaving that position.

    My wife and I had one of those, "wow, what if" moments last night.

    There's a lot to be learned here but I'll be keeping an eye on this.

  18. bakercape

    bakercape Senior Member

    Cape Cod. Mass

    If you don't mind my asking what dietary changes did you make for your son. My son has PDD-NOS and has a lot of stomach issues. I'd be surious to know what you've tried and what has worked for your son. thanks:eek:
  19. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    Yes, those. There's been a lot of those in my world lately. (*shakes head, sighs*)
  20. V99


    It's an interesting discussion.

    I was born, along with my twin brother, with a bowl condition. The interesting part, is that this condition it is often seen in association with autism. Neither I, nor my brother, have autism though.

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