1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Entrevista: la apelación del millón de dólares de Ian Lipkin para un estudio en el Microbioma
Simon McGrath se aseguró recientemente una entrevista con el mundialmente famoso doctor Ian Lipkin - un científico que sigue creyendo que EM / SFC tiene una causa física - para descubrir más sobre sus planes para un importante estudio del microbioma intestinal y para averiguar por...
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OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”, October 8, 2012, by XMRV Global Action

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Frickly, Oct 8, 2012.

  1. Frickly

    Frickly Senior Member

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    "Suffice it to say that the XGA team has reached a turning point, and we wanted to exit with a positive statement about hope. This is not a capitulation, rather an opportune time for us individually to focus on our health and our respective advocacy initiatives. October 8th seemed like an apropos day to close shop, and to pass the torch on to other forums. We hope that the tone and content of this letter conveys our feeling of continuing and irrepressible optimism about research and treatment prospects for neuro-immune diseases and for M.E. Even with XMRV’s demise, we have moved substantially forward. And each of us is continuing to work in the background on our own personal advocacy initiatives."

    https://docs.google.com/open?id=0B5WMbsUn0T0TZDJGU2x0NTlnZHM
  2. Frickly

    Frickly Senior Member

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    We’ve already found an error in our Resources for XGA members:Somehow we linked Jennie Spotila with Frank Twisk’s Twitter account. The resource list should read:

    ME/NEURO-IMMUNE BLOGS:
    Occupy CFS: www.occupycfs.com

    TWITTER:
    Jennie Spotila: https://twitter.com/knittahknits
  3. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Frickly likes this.
  4. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Hullo Frickly and gracenote,

    That's a great closing letter! It's moved me to tears, the way it sums up all the work by all the dedicated scientists and researchers and patient advocates doing their best for us. And you're right, we will prevail, it's simply a matter of more time and more work. I'm looking forward to the many moments ahead as the pieces of the puzzle come together and more and more members leave this forum because they've recovered enough to go on with their lives.

    cheers,

    Lynne B
    Frickly and gracenote like this.
  5. waiting

    waiting Senior Member

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    Excellent closing letter summarizing where XMRV has taken us and where we are now.

    Thank you to the XGA members who ran a professional site with up-to-date bulletins. Now rest and focus on your health.:thumbsup:
    Frickly and gracenote like this.
  6. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    CFS Patient Advocate
    WEDNESDAY, OCTOBER 10, 2012

    http://cfspatientadvocate.blogspot.com/2012/10/see-you-later.html

    ikke2001be likes this.

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