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From the 1st annual XMRV conference

Discussion in 'XMRV Research and Replication Studies' started by George, Sep 7, 2010.

  1. taniaaust1

    taniaaust1 Senior Member

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    Nods.. i completely agree... what concerns me thou is that if it turns out XMRV isnt causing our illness (but rather a secondary thing).. things will just go back to how they were, with studies being based on just opinions rather then tests of improvements etc. I wish some guidelines would be made of what designates actual improvement when it comes to CFS/ME. There is currently no standard..so everything is just opinion rather then facts.
  2. taniaaust1

    taniaaust1 Senior Member

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    pine.. that was a great mail. sweet and short :) . Thanks so much for sharing it.
  3. taniaaust1

    taniaaust1 Senior Member

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    thanks for sharing letter.. that was heart moving. Hopefully he will read it and feel that too.
  4. anne_likes_red

    anne_likes_red Senior Member

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    I agree. Also, each child with Autism often has at least two strong adults advocating on his behalf. They know how to make some serious noise!
  5. leela

    leela Slow But Hopeful

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    List of Pertinent email Adresses?

    Okay I;m having a massive attack of the Stupids lately, and the Overwhelms, so I was wondering...
    could someone compose a list of email addresses of doctors researches govt peeps that we should be
    mailing? I'd be delighted to try and compose a short, civil plea on our behalf, but can't even begin to figure out where or with whom to start. It sounds like some of you more organized folk might have a handy list to post or otherwise share?

    thanks!
    :Retro redface:
  6. August59

    August59 Daughters High School Graduation

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    Good one!!

    This guy is obviously intelligent and vocal, but in a good way. He is on the fence and letters like this is what will put him in our pasture. Good work!!
  7. Sean

    Sean Senior Member

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    Don't disagree with that. All I am saying is that for now the technical and political issues with the existing definitions, especially their relationship to HRMVs, are best served by the viral researchers concentrating on developing a reliable test. The rest will flow on from that. I don't want them getting bogged down in heated debates about the definitions right now. That can wait a bit.
  8. Megan

    Megan Senior Member

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    pine108kell,

    Thanks for the above message is fantastic because it isrespectful, short and to the point. These are the ones that might be read by really busy people.
  9. Recovery Soon

    Recovery Soon Senior Member

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    Yes, mine was long. Yours might be short. Please write one at any length. Everyone. Thanks.
  10. Martlet

    Martlet Senior Member

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    Sadly, I have a cousin with ME/CFS whose son has Aspergers. It would certainly help that family if the connection was proven.
  11. Martlet

    Martlet Senior Member

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    Recovery Soon - That was a really lovely letter and I hope it gets to where it needs to be and affects Dr Collins as much as it affected me. I will say a prayer for you. One for me?
  12. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Ok, so I've just been on the 'phone with a relative who happens to be a Urologist. Knowing I have been diagnosed with ME/CFS he asked if I had heard the news about the retrovirus?! I mentioned that I happened to have been glued to my laptop and the forums all this week!

    I asked how he had heard about it? A colleague of his has just returned from a medical conference in Australia and asked him if knew that the XMRV link with prostate cancer may also now be relevant in CFS/ME - as another colleague had mentioned it at the Oz conference!

    So the UK press may not have reported the news, but word is spreading slowly via the professionals in various corners of the globe at lightning speed - which is the main thing.
  13. Recovery Soon

    Recovery Soon Senior Member

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    Done........
  14. Sing

    Sing Senior Member

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    Letters to Collins and Fauci?

    Andrea Whittemore has implored us to write to Dr. Francis Collins and Dr. Fauci (did I get his name right?) but among others here, I don't have the email addresses. I hope we can go ahead with this! Please post these addresses on this thread and any others which are relevant.

    Thanks!
  15. Sing

    Sing Senior Member

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    New England
  16. Sing

    Sing Senior Member

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    Wanted to remind us of this excellent post (#546)!
  17. Recovery Soon

    Recovery Soon Senior Member

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    The moment is NOW- Please everyone write to Collins, Fauci, and Sebbelius this week. We have to strike while the iron is hot.
  18. shannah

    shannah Senior Member

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    If anyone is up to it, some sort of a brief outline of what to say would really be helpful for those having problems stringing more than two sentences together.
  19. leela

    leela Slow But Hopeful

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    shannah, thank you. i've been struggling with this myself. in a phase where the words won't flow.
  20. Rrrr

    Rrrr Senior Member

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