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URGENT: Email the FDA about Ampligen now and daily – final decision is imminent

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 6, 2013.

  1. Mouse girl

    Mouse girl

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    I wrote a great letter to the FDA, I've been writing for all the campaigns that seam good to me. But, I have to say, I was completely deflated to see that only 750 people total wrote in. No wonder there is not much interest in this disease. Oh my, so sad.
     
  2. Sasha

    Sasha Fine, thank you

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    Hi Mouse girl - great that you've written and that you write in all these good campaigns.

    The FDA saw the 750 people who wrote in as impressive, though. Relative to the response they normally get, it must have been big.

    On research1st's account of the FDA meeting, it says, '[The FDA rep] emphasized FDA’s recognition of CFS as a serious disease with no approved therapies and acknowledged the strong public interest in the day’s topic as evidenced by written testimony submitted to the record by more than 700 people.'

    http://www.research1st.com/2012/12/27/fda-panel-votes/

    Live from the meeting, Cort tweeted: 'FDA states they were delighted and OVERWHELMED by patient response.'

    http://forums.phoenixrising.me/inde...fate-in-live-webcast.20963/page-2#post-319208

    That was certainly my impression - it wasn't just what that FDA rep said but how she said it - she seemed amazed (before my connection dropped out because we were present in such numbers that we stuffed up their servers).
     
    Merry likes this.
  3. Sasha

    Sasha Fine, thank you

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    That's now updated in the text of the article so we can copy and paste or click or whatever! :)
     
  4. Nielk

    Nielk

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    Interesting. To me, it seemed like a powerful response from a group of very ill patients.
     
  5. Sasha

    Sasha Fine, thank you

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    Just done today's email.

    Hope they're getting snowed under! :)
     
  6. Mouse girl

    Mouse girl

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    Oh, thanks for sharing that info with me, Sasha. Makes me feel better. :)
     
    Nielk and Sasha like this.
  7. Sasha

    Sasha Fine, thank you

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    Just did today's email...
     
  8. cph13

    cph13 Senior Member

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    completed, completed!
     
    Sasha likes this.
  9. BEG

    BEG Senior Member

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    Emails daily. Going to sign the petition now.
     
    Sasha likes this.
  10. Sasha

    Sasha Fine, thank you

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    Just done today's email...

    The petition has over 2,000 signatures now.
     
  11. BobM

    BobM

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    Reno, NV
    Everyone, The 750 emails that gave your personal testimonies were amazing. The FDA was not prepared to get such a response. The numbers overwhelmed them to the point that they made specific comments several times, almost as a plea to say, We hope you're not angry with us. Patients did a great job by emailing and telling FDA what it's like to live with this illness every day and that we deserve a treatment. Anyone who was able to send an email should feel proud. And those who could not send an email need to know that those 750 emails helped to represent you and we as patients understand why you could not. We are currently sending in about 350 emails daily for the current "Approve Ampligen Now" action, if we could get that up to 500 emails daily that would be great. So again as a seperate action from the petition, ask friends and family to help any way they can and keep the emails flowing daily.

    I am humbled by your support and your actions to help change our lack of treatments,
    Thank you,

    Bob Miller
     
    Sasha likes this.
  12. Sasha

    Sasha Fine, thank you

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    That's really good to hear about the FDA's reaction, Bob - yes, let's get those emails boosted!

    350 is great but 500 would be greater so if you haven't been emailing, please start now!
     
  13. Sasha

    Sasha Fine, thank you

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    Just sent today's email and checked the petition - over 2,100 signatures now.

    If you haven't emailed or signed the petition, please do so now and keep emailing every day. This is a huge chance for us!
     
  14. Sasha

    Sasha Fine, thank you

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    Just done today's email.

    Let's keep going - the decision will be made in the next week or two.
     
  15. Sasha

    Sasha Fine, thank you

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    Just sent today's email.

    The petition is at all the twos - 2,222 - maybe that's lucky!

    If you haven't emailed yet, please do so now and keep doing it every day until we get a decision. Any day now!
     
  16. Sasha

    Sasha Fine, thank you

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    Just done today's email.

    There are 2,299 signatures on the petition - who wants to be the 2,300th? :)
     
  17. Sasha

    Sasha Fine, thank you

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    Just did today's email. Let's keep on trucking!

    Freds, the sponsor of the online petition, wrote this on the main petition thread (if you haven't already signed the petition, please do so - it takes seconds and it's here - http://www.ipetitions.com/petition/ampligen/

    We did well so far, but the sign-on rate has dropped in recent days.

    I'd like to appeal to the community.

    If you have an account on other boards or communities, it would be greatly appreciated if you could post about the petition there. If you're on Twitter or know someone with a large following, that kind of exposure is invaluable. The same goes, of course, for other Facebooks, printed press, etc. This includes audiences unrelated to ME/CFS.

    An FDA "no" to Ampligen would significantly slow down investment in chronic diseases in general. They voted it safe. They're not contesting its effectiveness per se, they mainly insist on knowing which subset is affected more than others. We're not saying this doesn't belong in an efficacy profile, we're saying its added benefit doesn't outweigh the tremendous human and financial cost. It's an insufficient justification for keeping a potentially life-saving drug from bed-ridden patients with no alternative. Authorities in Canada and Brussels approved it 2 decades ago. Do you really think they're less diligent? Respect our right to decide with our doctors and provide incentive for sponsors to give drug companies the means to get those subsets refined.

    We already know the subset that matters most. They're called ME/CFS patients.

    Thanks for your support!​
     
  18. Sasha

    Sasha Fine, thank you

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    Just did today's email...
     
  19. Sasha

    Sasha Fine, thank you

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    Just sent today's email - won't know what to do with myself when this is over...
     
  20. dannybex

    dannybex Senior Member

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    I don't get it. Why are people sending it duplicate (or daily?) emails? Surely each name will only be counted once. And what about those marked 'anonymous', with no message? Do you think they'll be taken seriously?

    I don't get it.

    ???
     

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