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CFSAC Day 3 10/14/10

Discussion in 'Action Alerts and Advocacy' started by jspotila, Oct 14, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    That last part is the test for the CDC and Dr. Unger for me- are they going to pick up on Pacific Fatigue Lab findings, natural killer cells, immune dysfunction, etc. Are they going to invite Peterson to to learn about his subset and how he created it? That is the key for me. Mary Schweitzer did an amazing, (completely off the cuff by the way) presentation focused on the subset identified by Peterson. They can't continue to ignore decades of clinical findings in this disorder.
  2. Cort

    Cort Phoenix Rising Founder

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    Nancy scores again and again and again. I million people using all these different drugs and no clinical trials......hmmm...

    Mary McGrory, Hemipherx's point person told me that the efficacy data for Ampligen is strong - they are focused on safety data because some toll-like receptor drug (which Ampligen is) blew up in the FDA face awhile ago - it actually gave some people an autoimmune disease - so FDA is very skittish about these drugs. Hemispherx, however, msut have decades of info on Ampligen patients - Nancy says they are all clean.
  3. Cort

    Cort Phoenix Rising Founder

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    You would be surprised. I was a member of the Fair Name Campaign to change the name to ME/CFS......there is virulent opposition in some quarters but that is the way is world is going. Either XMRV redefines this disease or it gets called ME/CFS. Great first move by Dr. Mangan.
  4. Andrew

    Andrew Senior Member

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    I like the fact that ME is first
  5. garcia

    garcia Aristocrat Extraordinaire

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    London, UK
    The sooner the pejorative term "CFS" gets dead and buried the better.

    Good riddance!
  6. RivkaRivka

    RivkaRivka Senior Member

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  7. garcia

    garcia Aristocrat Extraordinaire

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    Thanks for that Rivka!

    For what its worth I think it is outrageous for Wanda Jones to insinuate that it was the patients who messed up the webcast without a shred of evidence. I hope she apologises to you guys.

    You helped liven up what was at times a very boring meeting for those of us watching on webcast.
  8. Gemini

    Gemini Senior Member

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    Rivka,

    Wonderful photos, thanks for posting them!

    Also, thanks for making your excellent video
    part of CFSAC's patient's testimony for all to see!

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