1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

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. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
  2. Sasha

    Sasha Fine, thank you

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    There's also an online petition that Bob Miller is supporting and that already has over 1,500 signatures (including mine, now!) - he's going to print it off and present it to the FDA.

    http://www.ipetitions.com/petition/ampligen/

    Please sign! Another quick and easy action that could make a huge difference in our lives.
  3. Sasha

    Sasha Fine, thank you

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    Freds, the petition's originator, on the petition thread just posted:

    The petition has been getting a lot of response so far. I've been contacted by several advocacy groups and there's a handful of campaigns starting up to promote the petition.​

    Robert Miller will personally be handing over the signature list to the appropriate parties in DC and is coordinating with Cort Johnson on how best to proceed.​

    It looks like we're gaining traction, but the petition will need an all-out effort to reach the kind of numbers required for media exposure. The ultimate goal would be Congress -- but we need your help!​

    Some Twitter and Facebook activity can go a long way. Ask people to retweet your calls to sign the petition. Reply to sceptics that Ampligen was voted safe. Ask your Facebook friends what they would want. You *can* make a difference...​

    http://forums.phoenixrising.me/inde...o-ampligen-online-petition.21099/#post-323408
  4. justy

    justy Senior Member

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    Thanks Sasha - done both, e mailed the template letter and signed the petition. Decisions in the US will affect patients all over the world. I want to be able to go to my GP or health board and tell them there is a drug being used to treat M.E/CFS and it is approved by the FDA.

    All the best, Justy x
  5. Nielk

    Nielk

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    Done. Done.
    Sasha likes this.
  6. Sasha

    Sasha Fine, thank you

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    Thanks, justy - and I agree that, wherever we live in the world, we all stand to benefit from Ampligen being approved. It would be a huge boost to our legitimacy. And, like you, I want to be able to go to an NHS immunologist and ask them what they're going to do to treat my immune disease when the FDA has approved an immunomodulatory drug for ME.
    justy likes this.
  7. Sasha

    Sasha Fine, thank you

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    That petition is rocking up to the 1,600 mark now...
  8. Cort

    Cort Phoenix Rising Founder

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    It’s NOT a done deal. Ampligen didn’t win out but it did get a potentially critically yes vote.

    While the panel did not vote that Hemispherx had sufficiently proved that Ampligen was effective or safe enough for full approval, they did vote (8-5) that Hemispherx had shown Ampligen was safe enough for ‘marketing’.

    What does this mean? It means that most of the panel asserted that, given the needs of this population, Hemispherx had provided enough safety data for the community to be given a shot at the drug.

    That’s a huge opening. That’s a prescription for conditional approval with restrictions by the FDA and that was made possible by the huge turnout by the ME/CFS population; a turnout the FDA called overwhelming, a turnout that broke their servers and a turnout that made them very aware of how much this community wants to have access to this drug.

    Now, with the FDA in decision-making mode let’s make their decision as a difficult a one as can be. We are a force to be reckoned with. We deserve access to this drug. We know it works. We know every doctor that has used it for the past ten years strongly supports it.

    Let’s bring Ampligen home for the ME/CFS Community. Please support this action.
    allyb, Nielk, Sasha and 1 other person like this.
  9. Sasha

    Sasha Fine, thank you

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    I agree with everything you say there - and what was great about the last action was that we got to hear the numbers of patients and supporters who wrote to the FDA and it was huge.

    Sometimes you write an email and have no clue if anyone else is doing it. This time we do know - people are pushing for Ampligen in HUGE numbers.

    If you haven't already emailed the FDA, please do it now.

    If you've already emailed, please do it again today.

    If you haven't signed the petition, please do it now.
    allyb and justy like this.
  10. justy

    justy Senior Member

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    It took me less than 5 mintues and pretty much no effort.
    Do it!
    Sasha likes this.
  11. Merry

    Merry Senior Member

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    Done. Simple.

    Thanks, Cort, for the feedback on participation by ME/CFS community in the previous appeal to the FDA.
    Sasha likes this.
  12. SickOfSickness

    SickOfSickness Senior Member

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    Took me 1 minute!
    Sasha likes this.
  13. Sasha

    Sasha Fine, thank you

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    Just done today's email - took a minute.

    Also checked the petition, now over 1,700...
    justy likes this.
  14. Forebearance

    Forebearance Senior Member

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    Done!
    I probably wouldn't take Ampligen myself, but I understand how much this would help others, and with obtaining respect as ME/CFS patients.
    Sasha and ggingues like this.
  15. Marg

    Marg Senior Member

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    Done..easy!
    Sasha likes this.
  16. K2 for Hope

    K2 for Hope ALways Hoping

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    I had already signed the petition, but didn't know about the email, so thanks for putting this on the home page. I have now sent the email as well.

    Even if Ampligen is not the "best" answer, it still will cause more publicity to the illness and we need that badly as most people still don't "get it".

    I just spoke to someone today who said, "Oh, yeah, I heard about that illness." I had to explain about the Neuro Endocrine Immune disorder and the cognitive issues (not sure how well I did that....).

    But, the more emails they get, the more they will realize there is a whole community of people who are watching and waiting for answers - all over the world.

    So, as best as you can, if you can post something, here, please, please, try to sign the petition and send the email. It certainly cannot hurt.... and if it brings more recognition to this "severe and life-threatening" illness, then it has done something....

    Thanks,
    Karen
    Sasha likes this.
  17. Nielk

    Nielk

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    Sent -mail again today.
    Sasha likes this.
  18. Shell

    Shell Senior Member

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    signed it. I am never convinced petitions make any difference. They ought to - but those who consider themselves in "power" are not going to be in "service" to those they ought to be. But no harm in trying.
  19. Sasha

    Sasha Fine, thank you

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    Thanks, Shell - normally I'd agree but this one is well-coordinated and backed by major players and will be printed off and presented to the appropriate person if it gets the numbers. It takes less than a minute to do so even if someone's a sceptic, better to do it than not!
    Merry likes this.
  20. Sasha

    Sasha Fine, thank you

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    Bob Miller has asked me to remove Sara_Mabry@casey.senate.gov from the list following guidance from Senator Casey's office and there may be other additions or removals according to response so please keep an eye on this thread. I don't have edit access to the article so changes might be slow to appear there.

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