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FDA should give CFS patients access to Ampligen! --Online Petition

Discussion in 'Petitions' started by JohnnyD, Dec 27, 2012.

  1. Sasha

    Sasha Fine, thank you

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    Hi Freds - I'm assuming you're the petition's sponsor, listed on the petition page as, 'Fred. Neither patient, doctor, nor investor. I was touched by testimony.' I'm very grateful to you for setting this up, even without having a vested interest!

    I've mentioned your petition in a comment on our current front-page article on Bob and Cort's email campaign on Ampligen - I hadn't been aware of your petition when I wrote it or I'd have put it in:

    http://phoenixrising.me/archives/15031

    Hope that helps get more signatures.

    Thanks for giving more info and an update - that always encourages people!
     
    BobM likes this.
  2. Freds

    Freds

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    Hello Sasha. Yes, I'm the petition sponsor. Thanks for the comment -- and you're welcome, it's nice to help out.
     
    K2 for Hope and Sasha like this.
  3. Freds

    Freds

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    By the way, to clarify my message above, the petition will be presented to the FDA and a Congress Representative if we have the numbers.
     
    Sasha likes this.
  4. Enid

    Enid Senior Member

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    Thanks Johnny - signed in.
     
  5. CallieAndToby

    CallieAndToby Senior Member

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    Signed.
     
    Sasha likes this.
  6. Sasha

    Sasha Fine, thank you

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    They've got over 1900 signatures now - every time I look, they've gone up another hundred!
     
    K2 for Hope likes this.
  7. Sasha

    Sasha Fine, thank you

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    Over 2,000 now. :)
     
  8. JohnnyD

    JohnnyD Senior Member

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    Sasha, i don't see a way that I can modify the first post to update the link. Maybe a moderator could update the post...?
     
  9. Sasha

    Sasha Fine, thank you

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    Hi Johnny - when you're logged in, you should see in each message that you write, below a dotted line, on the left, your name, the date and time you posted, and then options to 'edit, delete, report' the message. If you click on 'edit' you can modify your first post.
     
  10. JohnnyD

    JohnnyD Senior Member

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    Hi Sasha, I see those options on my message above, but not on the first post. Must be something special about the topic opener - I think a moderator is going to have to change it.
     
  11. Nielk

    Nielk

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    I believe that only a moderator can change the title of a thread.
     
  12. Sasha

    Sasha Fine, thank you

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    Sorry, Johnny, I didn't realise that - I'll bring it to a mod's attention.
     
  13. Sasha

    Sasha Fine, thank you

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    Hi Nielk - that's true about a thread title. I hadn't realised it was true about the text of an opening post as well. :D
     
  14. BobM

    BobM

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    Sasha,
    Thank you for getting this posted. We have over 2000 signatures, but we need more. So everyone please ask friends and family to sign on. I have asked family and friends that belong to church groups and other social groups to ask for their friends and co-workers to sign on. I have also sponsored the petition to get it in front of more eyes.
     
  15. Sasha

    Sasha Fine, thank you

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    Thanks for all your efforts on this, Bob - you're a hero!
     
  16. Freds

    Freds

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    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!
     
  17. Sasha

    Sasha Fine, thank you

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  18. Freds

    Freds

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    Sure.

    Robert Miller will be leaving for DC next week to hand over a printed copy of the petition, most likely by January 25th (subject to change at his discretion). It's important we make a final push now.
     
  19. Sasha

    Sasha Fine, thank you

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    Thanks, Freds - good to know.
     
  20. Sasha

    Sasha Fine, thank you

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    Here's the ipetitions site privacy policy:

    http://www.ipetitions.com/privacy
     

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