Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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New WPI IHYD Fundraiser Videos, patient stories, ARV clinical trials!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Sep 12, 2010.

  1. LJS

    LJS Insert Witty Comment Here

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    East Coast, USA
    New WPI IHYD Fundraiser Videos, patient stories, ARV clinical trials

    Note: Italic text under videos is from the you-tube video descriptions

    Video 1: http://www.youtube.com/watch?v=kiUH17-gJak
    [video=youtube;kiUH17-gJak]http://www.youtube.com/watch?v=kiUH17-gJak[/video]
    A brief introduction to the Whittemore Peterson Institute, followed by the story of Rebecca Ghusn, who has been ill with ME/CFS for almost five years.



    Video 2: http://www.youtube.com/watch?v=lRygh3QtmHU
    [video=youtube;lRygh3QtmHU]http://www.youtube.com/watch?v=lRygh3QtmHU[/video]
    Jamie Deckoff-Jones discusses the effect of Whittemore Peterson Institute research on the lives of her and her daughter. Chris and Hugh Hempel talk about their daughters, Addi and Cassi, and their struggle with Niemann-Pick Type C.
    Note: Dr. Jamie Deckoff-Jones is the author of the X Rx blog, her and her daughter are treating there XMRV infection with the HIV HAART protocol



    Video 3: http://www.youtube.com/watch?v=uM8Hs1nuk5I
    [video=youtube;uM8Hs1nuk5I]http://www.youtube.com/watch?v=uM8Hs1nuk5I[/video]
    Ralph Toddre presents the story of his daughter Allison, who suffers from an autism spectrum disorder, and talks about how the Whittemore Peterson Institute has helped his family. The video concludes with an overview of WPI's goals.


    I find the last video the most interesting in the implications; it seems to confirm that the WPI has already started clinical trials with good results, we heard in an interview sometime ago a few weeks ago with Annette Whittemore that they have some data from a small clinical trial.
     
  2. Anne P

    Anne P

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    Australia
    Thank you LJS for posting these videos. How comforting to see real people getting help at WPI.
     
  3. Deatheye

    Deatheye Senior Member

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    Seems like the WPI is really pushing this o_O
    I just hope they are not going too far and hurting themselfs.
    Was there any information about WPI allready threating ilnesses before? Seems like a big jump for medicine if that's all curable soon and has a known cause. I'm kinda starting to feel like am seeing history beeing made :D
     
  4. pamb

    pamb Senior Member

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    thank you so much for sharing uplifting news. This wait is so hard and certainly hope makes it seem much more possible to keep hanging on.
     
  5. LJS

    LJS Insert Witty Comment Here

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    They quickly mention a small clinical trial on the August 16'th episoiode of Nevada Newsmakers: http://www.nevadanewsmakers.com/video/default.asp?showID=1117
     
  6. Navid

    Navid Senior Member

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    videos

    the stories told in the videos are great...altho only dr. deckhoff and her daughter appear to have cfid's/me. the other little girl who they say has cfid's/me has symptoms that are very different from most cfid's patients i know and read abt....she has an underactive immune system while most of us have an overactive system.

    ....the videos do not feel modern/dynamic/catchy or up to date...sorry to be critical, but to get attention in this fast paced, media driven world, the videos should have a more modern feel. nobody asked but, i gave my 2cents : )


    ooops music is from recovered me patient....now i feel bad, so i edited out my crit.
     
  7. LJS

    LJS Insert Witty Comment Here

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    I totally agree on the music, over sensationalized, it bothered me too. So that makes two of us.
     
  8. ukxmrv

    ukxmrv Senior Member

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    I thought the videos were wonderful - music and all. Different tastes - hope that it appeals to people who give money.
     
  9. *GG*

    *GG* Senior Member

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    What does IHYD stand for?
     
  10. ukxmrv

    ukxmrv Senior Member

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    I hope you dance?

    name for their charity fundraising event
     

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