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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Autism and XMRV

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

  1. markmc20001

    markmc20001 Guest

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    Athene,

    It's been a long time and I am 37 now. But I rememeber being depressed, and not wanting to spend time around others, difficulty maintaining eye contact, and difficulty with speech or finding words. There is probably more.

    I sometimes think one thing that would have been helpful to me would be through religion. I'm not religious now and have many reasons why I am still not. However, the supportive environment that kids would get thru religon might help keep him in the loop even though he doesn't want to. Or being around family. But the typical playground mentality might be rough on those kids who can't communicate well. A strong social support group(thru religion) may help kids work through challenges rather than kind of "get removed" from society.

    Also finding a hobby like woodworking or sewing (something active and prodcutive with tangible results)to keep the kid busy and stimulated. Sitting in class and maybe not succeeding at structured courses, may be an unecessary blow to a kids ego becuase he may feel lousy for not doing great like everybody else. However, having something to look foward to, and suceed at is important for everybody I think. Being a kid and very bored or depressed is a rough. I think kids like that need something to grab onto and be good at and interested in and the traditional school system just doens't get it.

    On a sperate note: I recently realized that I may also have a gluten and maybe casein gut problem after watching corts video link on gluten sensitivity in the "gut threads". After moving and not having much to eat, I ate alot of cheese and pasta. Wow, the brain fog and pressure in my head. Defintely drops the IQ a notch. And the delayed reaction, WOW get slammed a day later. yikes!

    all the best,
    Mark
  2. Marylib

    Marylib Senior Member

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    For Athene and all

    In looking for info about vaccines for my nephew, someone referred me to a pediatrician, Dr David Goldberg at neuroimmunedr.org

    Seems he may be of like mind with people at the WPI and considers "autism" as a neuro immune disease in the same ball park as CFS, ADD, etc. He lists lots of the famous CFS docs (Klimas, Hyde, etc) on his website.

    Seems he treats with diet, and also with pharmaceuticals. Just from my brief scan, seems he uses fluoxetine alot (Prozac). Interestingly, that drug is the only one that used to help when my CFS was less severe (still helps some but my illness has progressed).

    Anyway, you may know about him already (he is in California) or may want to check it out.
  3. anne_likes_red

    anne_likes_red Senior Member

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    Re Gluten and Casein

    ......(and carbohydrates in general)....

    I followed the work of The Autism Research Institute with very keen interest earlier in the 2000's. (They were looking at Methylation, and so was I...from a ME/CFS perspective *waves to Rich*.)
    I remember thousands of parents of children with Autistic Spectrum Disorders replied to a survey the Institute did on which interventions helped their children (physically, cognitively, behaviourally) the most and hands down the biggest success for these parents was implementing something called the Specific Carbohydrate Diet. The diet was orignally used for people with bowel disorders. It includes no grains, and only carbohydrates that are easily digested due to their sugar structure.
    Also, for a long while dairy is only taken in a fermented state - yogurt (fermented no less than 24 hours so not like commercially available yogurt). This way, if I understand correctly, the proteins (like casein) are supposed to be completely broken down.

    I follow this way of eating myself, only no dairy at all, and since starting it I haven't needed any pain meds for inflammation. Earlier this year I slipped and had some wheat when out for a meal and the reaction was horrendous! Bloating, severe headaches and brain fog. Almost instant reaction in my case and it lasted 24 hours.

    ASD kids have a particular enzyme deficiency (DPPIV) which affects gluten metabolism.
    I believe ME/CFS people often have this too....

    On Timothy Lucketts blog he recently noted: "About DDPIV* affected by XMRV - Dr. Klimas reported a significant expression of CD26+ DPP (IV) activated cells in CFS subjects.

    Klimas NG, Salvato FR, Morgan R, Fletcher MA. (1990) Immunological Abnormalities In Chronic Fatigue Syndrome. J. Clinical Microbiology. (6) 1403-10."

    *He was answering a query about whether XMRV could possibly affect this enzyme and he meant to say DPPIV. It's still not clear if or how XMRV would affect it, but the indication seems to be that some similar enzyme abnormality is present in CFS.
    And yes, that's our Dr Klimas :)
  4. susan

    susan Senior Member

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    I have just begun with a doc who treats autism adn CFs. he gave me an enzyme to eat with food and it it digests gluten and casen int he gut. We can now eat gluten he says. It has this DPP1V in it....Lifestyle enzymes. I notice iherb.com have products similar with the DPP1V in them tho not exact formultion as the Lifestyle.
  5. Athene

    Athene Never give up

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    Scd

    I agree the specific carbohydrate diet is wonderful. I followed that for a number of years and it helped so much, and I also applied it to my son, but now unfortunately we have got even worse and are on something you could call the No Carbohydrate Diet! The only thing we can tolerate is pure glucose. We have been promised that with our antibiotic and probiotic therapy we will improve and so I hope we can return to the SCD.
  6. amstanley

    amstanley Guest

    Autism Speaks response to my Query on XMRV

    My blog post on the response from Autism Speaks: Autism Speaks not taking leadership investigating XMRV


    Title of the article pretty much says it all, but a couple of statements in their response did stand out:

    In other words, when they demonstrate something solid, we'll be interested.

    FWIW...

    Also, of interest, there is a very good summary of what is known and not known about XMRV at http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1087&Itemid=222. You may wish to look at it.
  7. natasa778

    natasa778 Senior Member

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  8. fresh_eyes

    fresh_eyes happy to be here

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    @ amstanley - Not too bad, I think - at least they're watching the research.
  9. flybro

    flybro Senior Member

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    Fragile X again

    This link gives some info on Fragile-X, I'm putting it here in hope that one of you brain box's look at it.

    My question which i poss wont get an answer until I see the genetics guy next year is, can anyone see if this mutation could possibly be the work of XMRV.

    here the link
    http://www.fragilex.org.uk/LinkClick.aspx?fileticket=KjPT4VpJ7FY=&tabid=57

    This is an extract, i hope this will help some people.

    A substantial minority of children with fragile X syndrome qualify for a label of autism due to
    multiple qualitative impairments in the domains of social functioning, language and
    communication, ritualistic/stereotypic tendencies and imagination deficits. A few individuals
    with autism turn out to have fragile X syndrome. Thus, any person with autistic features should
    be tested for fragile X syndrome. Far more children with fragile X demonstrate a characteristic
    profile of autistic-like disabilities while failing to fulfil diagnostic criteria for typical autism.
    These features contrast with those of children with typical autism. In fragile X, social anxiety is
    far more frequent than social indifference. Crowded environments like parties, supermarkets and
    public transport may cause excessive distress while one-to-one settings with ample space are
    preferred. A generalised sensory defensiveness manifests as an aversion (not indifference) to eye
    contact. Auditory defensiveness can present as hyperacusis. Tactile, olfactory and gustatory
    sensitivities have also been reported. Self-injury is common in the form of biting the base of the
    thumb, usually in response to anxiety or frustration. Imitative and symbolic play is usually
    delayed but does develop. Individuals often demonstrate stereotyped repetitive behaviours such
    as hand flapping and an insistence on routine with a dislike of variety.


    This is a BBC article.

    http://news.bbc.co.uk/1/hi/health/7147742.stm

    Genetic engineering has been used to alleviate symptoms of a condition which is a leading cause of inherited learning difficulties and autism.
  10. amstanley

    amstanley Guest

    The Interagency Autism Coordinating Committee as a Model for Canada

    The Interagency Autism Coordinating Committee as a Model for Canada
    http://soaringhorse.blogspot.com/2009/12/interagency-autism-coordinating.html

    an excerpt:

    Thanks to JillBohr for pointing me to the IACC website. I had no idea.

    Happy Holidays everybody!
  11. JillBohr

    JillBohr Senior Member

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    1 in 110 children diagnosed with autism

    This was released from the CDC yesterday afternoon. BTW- This figure applies to children that were 8 years old in 2006 (basically, children born in 1998 - same year that my first child was born).

    http://www.cnn.com/2009/HEALTH/12/17/autism.new.numbers/index.html

    It would be great if we had good statistics on people diagnosed with ME/CFS. Although, it is difficult since there is a huge time gap between getting ill and being diagnosed. Does anybody know if there are statistics on this? How does the CDC track this?
  12. parvofighter

    parvofighter Senior Member

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    CDC's just-released autism figures; Dr Insel on XMRV

    Found this fascinating post on the CDC's release Friday of the latest Autism Spectrum Disorder figures. Also an interview with Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the federal government's Interagency Autism Coordinating Committee (IACC), who is tasked with recommending funding priorities for autism research and services. Check out what he says about XMRV, autism clusters... I used to be extremely skeptical of a possible immunization/viral/autism link. And equally so about a link between diet and autism. Now I'm thinking this is very cool stuff indeed. I wanna learn more.

    From: http://www.dailystrength.org/c/Chronic_Fatigue_Syndrome/forum/8672804-autism-rise-xmrv
    December 19, 2009
    David Kirby: Dr. Insel on Rising ASD Numbers: No Question About Environmental Factors
    On Friday, the CDC released its long-anticipated (HERE) autism figures, showing that the average rate of autism spectrum disorders (ASD) among 8-year-olds increased by nearly 60% between 2002 and 2006, with almost one percent of US kids affected Also on Friday, the nation's top autism research coordinator said that better diagnosis and reporting could not "explain away this huge increase," and that "there is no question that there has got to be an environmental component here."

    He added that some ASDs may be preventable, that some children could recover from the disorder, and that a virus might conceivably play a role in some autism casesSome of the new figures were quite staggering. For example, the reported rate among all 8-year-olds in Arizona skyrocketed by 95 percent in just four years. Also in Arizona, among boys, the ASD rate reached 189-per-10,000. It also reached 193-per-10,000 in Missouri - or nearly two percent (1 in 50) of the total.

    So what do these increases mean? I put that question to Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the federal government's Interagency Autism Coordinating Committee (IACC), tasked with recommending funding priorities for autism research and services. Was the increase simply an artifact of better diagnosis and reporting? Or could there be an actual increase in the numbers and, if so, wouldn't that necessarily implicate environmental factors in ASD?

    I was surprised by Dr. Insel's frankness.He said factors such as better ascertainment "don't really explain away this huge increase" and that "you really have to take this (increase) very seriously - from everything they are looking at, this is not something that can be explained away by methodology, by diagnosis" He added that he never saw a single case of autism during his training in the mid-1980s, including a full year's rotation in child psychology. "I wanted to see children with autism. I couldn't find them," he said. "Now I wouldn't have to go any further than the block where I live to see kids with autism today."

    So if there is an actual increase in incidence year to year, I asked, wouldn't there necessarily also have to be an environmental component to at least some cases of autism? "Yes," Insel said. "I don't think anybody is arguing that it is 100-percent genetic"There is no question that there has got to be an environmental component here."

    Dr. Insel also suggested that there may be autism "clusters" around the country, which would also implicate environmental factors. "It could be that the Somali story in Minneapolis is an important geographic cluster," he said. "It could be that there are clusters that have actually been indentified in California. It's a little too early - and I don't think the data are published - but I have seen some data in unpublished form that would suggest that that may turn out to be the case."

    But, Insel said, "It's quite believable to me that there are many children who develop autism in the context of having severe gut pathology, of having autoimmune problems, of having lots of other problems. And some of these kids really do recoverDr. Insel hinted that genetic research into autism is about to undergo a major transformation, from looking at genetic sequencing, "which is what we have been doing for the last decade," to looking at the "emerging field of epigenetics, or epigenomics." He defined this as "looking at how the DNA is bound up with all kinds of proteins. That is largely affected by experience, or by environment. Some of it is probably hardwired, but a lot of it has to do with exposures, particularly early in development but even, as we are learning, even after birth "

    I also asked Dr. Insel about the recent discovery that a retrovirus, XMRV, had been found in 98% of all patients with chronic fatigue syndrome. Some researchers say the virus may be implicated in autism, as well"We are hot on that, and I wish I could tell you more," Insel said. "All I can tell you is that we have an intramural program here which is kind of our home team, which has seen about 400 kids with autism over the last couple of years. And they have been looking at regression; they've been looking at recovery." He said the researchers "jumped on the XMRV thing even before it was published."

    Dr. Insel said that he had heard that researchers at the University of Nevada had identified XMRV in about 40% of ASD children studied. "I have been trying to track that," he said. "There is a paper that has been submitted, but I haven't been able to get it, and I don't know what the data look like. But I think this is really interesting."

    Why? Because, he said, "If we could just find a small group, and the opportunity to begin an antiretroviral treatment regime, that could be terrific. :)That would be the kind of thing we're really looking for in this field, is finding the subgroups that might have specific therapies that would make a difference."

    Fascinating stuff about the autism "clusters", isn't it? And BINGO. Another patient group to potentially add to the voices calling for XMRV diagnostics/treatment. If the XMRV/autism link holds, we gotta try to enlist Jim Carrey & Jenny McCarthy to advocate for accelerated XMRV care. No?
  13. Advocate

    Advocate Senior Member

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    Thanks for keeping us up to date!

    David Kirby referred to Dr. Insel, and I didn't know who he is, so googled.

    Thomas R. Insel, M.D., is the director of the National Institute of Mental Health and chairman of the Interagency Autism Coordinating Committee in the U.S. Department of Health & Human Services.

    In other words, IACC is autism's CFSAC, and Insel is in charge of it, in charge of research into autism. So it's pretty significant that he is now admitting autism is increasing and that there could be environmental factors related to the increase. It's also significant that he is taking XMRV seriously.

    The first time I heard of a possible autism/CFS link was from Amy Yasko, a naturopath in Maine who developed a complicated treatment protocol for both.
  14. fresh_eyes

    fresh_eyes happy to be here

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    Great stuff, parvo. I'm especially interested in this bit:

    Sounds like the WPI has an autism paper now in the pipeline. Yaaaaay! That's probably why the embargo on that one Mikovits talk, huh? Waiting for that paper to be published?

    YES. And others - the autism community has done an amazing job with advocacy.
  15. Frickly

    Frickly Senior Member

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    Parvo

    Thanks for posting this. This is very exciting news! I would be totally in the dark if I didn't have this forum. I havn't had time to read all the posts in this thread so forgive me if I am stating something that has already been discussed. I did see the CDC interview by the CDC discussing the report on autism that was just released. They continued to state that the rise of autism is related directly to better diagnostics. :mad:

    Personally, I do not have any faith in the CDC and think most of the info coming out of that organization is BS when it comes to autism or CFS. I am thrilled that the National Institute of Mental Health Is looking in another direction. This should have been done along time ago.

    When WPI comes out with the test for XMRV my son and I will both be tested. I am sending a copy of your post to my family. I think it is all coming together now.:)
  16. Frickly

    Frickly Senior Member

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    Fresh eyes

    When the XMRV news broke I kept going to the Jenny McCarthy site to see if they made any statements about the new as it relates to autism. Nothing.......Hopefully, the autism community will now stand up and take notice.
  17. JillBohr

    JillBohr Senior Member

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    Wooohoooooo1

    Sorry, nothing to add here but I am so totally giddy at this point. Wooohoooo! So excited about Tom Insel being "hot on it". Plus a paper! I love papers!
  18. fresh_eyes

    fresh_eyes happy to be here

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  19. Frickly

    Frickly Senior Member

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    I have not heard about that. Very exciting! I have to go Christmas shopping now because I have done nothing to date.:rolleyes: When I get back I am going to check out your links.

    Thanks,
  20. anne_likes_red

    anne_likes_red Senior Member

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    The CDC seems spectacularly ignorant when it comes to more than a few (likely related?) modern epidemic illnesses.

    The Neuro Endocrinologist I worked for was in his early eighties when I last saw him in 1994 and he was speculating about a link between Austism (spectrum disorders) and CFS/ME back then...

    Why has the CDC chosen to remain so ignorant? Millions of families are under so much stress. And...infectious?

    Lets hope they get their smart hats on quick.

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