A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Make Room on Your Calendar 20 Dec for the Live Webcast of the FDA Ampligen Hearing

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 18, 2012.

  1. Cort

    Cort Phoenix Rising Founder

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    One question...Did Carter come on too strong? Or did he effectively state his case?
     
  2. waiting

    waiting Senior Member

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    Yes, the ETT is such an essential and strong, objective aspect of this study that I hope Dr. Snell has a chance to make the necessary points to the committee.

    From the trial paper (March 2012):

    "Cardiopulmonary exercise tolerance (ET) testing is an objective

    measurement of treatment efficacy for fatigue and is accepted as a

    regulatory standard for drugs ameliorating exertional fatigue by

    exhibiting an average improvement of at least a 6.5% in intragroup,

    placebo-adjusted ET [16–19]. The Phase III multi-center,

    double-blind, placebo controlled trial reported here uses ET as its

    primary endpoint and the reduction in drug usage for symptom

    relief as one of several secondary endpoints in the evaluation of

    rintatolimod in the treatment of CFS/ME."
     
  3. dannybex

    dannybex Senior Member

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    I don't know what you mean by "ME/CFS patients have no other prospects", unless you mean drugs. ???
     
  4. dannybex

    dannybex Senior Member

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    At one point I suppose they did. But they made a ton of money in June 2009 when they released false reports that the FDA was about to approve Ampligen, sending the stock from something like 50 cents to over $4.00. Someone made a lot of money during that period...
     
  5. waiting

    waiting Senior Member

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    Cort, you gave poignant, clear testimony. Thank you.
     
  6. Sasha

    Sasha Fine, thank you

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    I wondered why he'd stopped tweeting - phew!
     
  7. Cort

    Cort Phoenix Rising Founder

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    Thanks...for some reason my legs were shaking like leaves in the first one...I couldn't believe it...I dropped out to study the next testimony I had to give...

    Next up the all important question period...and then the Vote:aghhh::aghhh: o_O
     
  8. waiting

    waiting Senior Member

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    There was no sign of any shaking legs that came across on video anyway. You're a great speaker, just like you are a great writer. :)
     
    Sasha likes this.
  9. Marg

    Marg Senior Member

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    Thanks Cort fot the tweets, as usual you are telling the story as it should be told...blow by blow.
     

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