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The Age of Autism Blog: My wife, my daughter and XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jimk, Sep 24, 2010.

  1. Jimk

    Jimk

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    Cleveland, Ohio
  2. guest

    guest Guest

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    Thanks a lot! This is what I was looking for, the article describes everything from the Science study to PNAS and how XMRV could cause symptoms. This is what I would show to other people if I wanted to inform them about CFS/XMRV.
     
  3. LJS

    LJS Insert Witty Comment Here

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    I was a little taken back by some of things the autism folks said in the comments section of this article, completely backwards thinking. If there is a link between XMRV and autism it is a win-win for all of us. It will increase research and funding in the virus and both conditions. It XMRV is determined to play a role or cause either or both conditions it will potentially lead to useful treatments at a much faster rate then if only one of the conditions had a correlation with XMRV.

    I really hope this study gets published soon; I wonder if they are waiting until the testing gets nailed down before publishing the data to prevent another sweep of negative studies, unessential controversy, and criticism. The WPI has mentioned they have found XMRV in autistic kids as far back as November of 2009 and nothing has been published on the connection.
     
  4. mojoey

    mojoey Senior Member

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    So what would be an intelligent response to patron99's question about the possibility of an exogenous retrovirus being the result of an endogenous retrovirus + hypomethylated DNA?
     
  5. guest

    guest Guest

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    Natasa said: "answer: Certain. It has been checked."
     
  6. Merry

    Merry Senior Member

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    Thank you, JimK. Great article.
     
  7. bakercape

    bakercape Senior Member

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    Maybe

    they are afraid to publish it.

    Look what happened to Andrew Wakefield when he published a connection with Vaccines and autism. They found a way to retract his study from the Lancet and take away his licence.

    Imagine if XMRV has anything to do with vaccines or has some government involvement. I would imagine the government and big pharma would crush the WPI and JUdy Mikovitz.
     
  8. KHeckenlively

    KHeckenlively

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    To LJS and the other wonderful members of this forum.

    I believe that the XMRV angle will seem to come out of the blue for many in the autism community. If you could comment on my article and in a kind way deflect some of the things that have been said, like the question of co-morbidity, it would be immensely helpful for both of our community. I've been living with this issue for more than 5 months now and it does feel wonderful to finally be able to talk about it in a public forum. I have been talking privately to many of the leaders of our community about it for some time, so there's a lot of understanding of this at the top, but not among the rank and file.

    If you could reiterate the immensity of a "retrovirus" and how unlikely it is to be simply a passenger virus that would be very helpful. I'm so impressed with all of you and hope we work together soon.

    All the best,
    Kent Heckenlively
     
  9. leaves

    leaves Senior Member

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    Thank you so much for your great article Kent :)
    It would be wonderful if we could work together. So many treatments (viral, bacterial, scd diet, paleodiet, gluten/casein free diet, HBOT, heavy metal chelation, immune modulators etc etc seem to help both groups. For that reason I see a DAN doc for quite some time already :) although I am not ASD. He is very supportive and knowledgeable and he is also up to date with the XMRV. So I am very optimistic.
     
  10. alex3619

    alex3619 Senior Member

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    Hi everyone

    Some months ago it was suggested that I might have Aspergers by someone on these forums. I countered with the possibility of Adult Onset Autism. I was only half joking. My long term CFS doctor is also an autism researcher. This is not a coincidence. Over the last decade the links between CFS and ASD have been growing.

    bye
    Alex
     
  11. dannybex

    dannybex Senior Member

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    Was it Rich Van Konynenburg? That's been one of his hypotheses for several years now...that CFS may an autism spectrum disorder.
     
  12. Cloud

    Cloud Guest

    Thanks JimK.....Great article. It turned up on my google alerts just this morning. Thanks Kent....I'm glad to see the growing collaboration between our communities. Even though I am the only one with ME/CFS in my immediate family, the obvious familial tendency is for neuroimmune disease.
     
  13. muffin

    muffin Senior Member

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    KHeckenlively - Great articles on Autism!

    Kent: I read your articles on Autism and esp. the one that deals with XMRV. I noted that your wife and her mother both tested positive for XMRV. Certainly begs the questions, doesn't it?

    Yes, the ME/CFS folks need to join forces with the Autistic advocates to get funding for the Retrovirus family. There is something there and we must have major funding to find out what this Retrovirus family is involved in. I bet it causes or is part of a critical cause of many diseases and cancers - but we need the funding to get this research done.

    Thank you also for your donation to the ME/CFS Worldwide Patient Alliance (MCWPA) that you made today. Your donation was doubled and we have just about hit the matching 2-for-1 donation special.

    The MCWPA Team is working hard and will have four ADS out for review shortly. The website will also be up and active soon as well. Donations are coming in and membership is growing everyday.
    We are doing great for an initiative that was started about 7 or so weeks ago by CFS/ME sick people.

    Watch the fireworks that will happen in both Washington DC and in Atlanta (home to the CDC) AFTER our AD hits the Washington Post!! This is going to be FUN!
     
  14. *GG*

    *GG* Senior Member

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    Love your enthusiasm Muffin.

    This is going to be FUN! Really?
     
  15. muffin

    muffin Senior Member

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    Yes Dear, this will be fun for US ME/CFS sick to watch the Feds chase their tail.
     
  16. muffin

    muffin Senior Member

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    Dannybex said: "...that CFS may an autism spectrum disorder" Actually, I would not be surprised if there was a subset of ME/CFS people in the autism spectrum. My sister, who was a nurse and dealt with many very severe autistics in group homes, thought she saw patterns between the patients she took care of and some of her/my personality traits. At first I blew her off, but after listening to two close friends with kids who have different degrees of autism, I don't know anymore. It is possible and I would not rule it out.
     

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