Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Bob Miller calls for NIH trial for Ampligen: phone & email to support his ongoing hunger strike

Discussion in 'Action Alerts and Advocacy' started by Sasha, Feb 6, 2013.

  1. Nielk

    Nielk

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    Has anyone received this letter and what does it mean?

     
  2. dannybex

    dannybex Senior Member

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    That's basically the same thing that's posted on the FDA website -- their side of the Ampligen story ("In 2009, the review division asked Hemispherx to conduct at least one additional controlled clinical study showing a convincing effect in the CFS population. No new trials were conducted"), plus their (supposed) commitment to future drug development for ME/CFS.
     
  3. caledonia

    caledonia

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    Blah Blah Blah, form letter, empty promises, Blah Blah Blah, please stop clogging up my email box already, Blah Blah Blah.
     
  4. Kati

    Kati Patient in training

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    caledonia, if you have better options, please share with us.

    One of our fellow patient has not had food in over 9 days on our behalf. The least we can do is support him.
     
  5. caledonia

    caledonia

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    Kati
    I'm totally on board with Bob. Been sending out emails to NIH, FDA, reps, local NBC affilate etc.

    My response was to the lame form letter that came from the FDA. NielK wanted to know what it meant. I thought I was being humorous, but I guess it didn't translate.

    We absolutely need to support Bob and keep pounding on the NIH/FDA until we get clinical trials for Ampligen. We should not accept lame form letters and empty promises.
     
    Kati likes this.
  6. Kati

    Kati Patient in training

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    Aww sorry Caledonia it was a misunderstanding.
     
  7. BEG

    BEG Senior Member

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    Bob's status (as of 30 minutes ago) from Courtney Miller on Hunger Strike for Ampligen facebook page:

    Courtney: Bob's ok. More tired today, and taking a nap now. Be assured we're monitoring him well. He wants you to know the federal offices are hearing from everyone. Keep it up! We are being heard in the best way! I'll update phone #s to call before the morning.


    www.facebook.com/HungerStrikeForAmpligen?fref=ts
     
    Sasha and Merry like this.
  8. Sasha

    Sasha Fine, thank you

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    I think we've got to bear in mind that this is a campaign with a lot of updates about where to call, what to do etc. so please keep reading the comments here, folks! If anyone sees anything new, please post it - we're all in different time zones so we're not all going to catch everything as it comes out. Still the same email but with Bob cc'ed in.

    This most recent post:

    Just a fast update for everyone, Robert is resting as it has been a bit of a rough day. Please know that he is sleeping and unable to do his own posting tonight.

    courtney
     
    peggy-sue and Merry like this.
  9. SickOfSickness

    SickOfSickness Senior Member

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    BEG and Kati like this.
  10. *GG*

    *GG* senior member

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    Hmm, now lets see how much Obama and the rest of the politicians and Gov't employees actually do!

    GG
     
    BEG likes this.
  11. Sasha

    Sasha Fine, thank you

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    Thanks, SoS - I'm starting a new thread to announce that so everyone can see it.

    I'm relieved he's stopped! I was very worried for his health.
     
    BEG likes this.
  12. SickOfSickness

    SickOfSickness Senior Member

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    Me too.
     
    BEG likes this.
  13. peggy-sue

    peggy-sue

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    And me. :balloons:
     
    BEG likes this.

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