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Bob Miller on hunger strike: support him by emailing FDA about Ampligen - decision imminent

Discussion in 'Action Alerts and Advocacy' started by Sasha, Jan 31, 2013.

  1. Sasha

    Sasha Fine, thank you

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    Firestormm just posted this message from Courtney Miller elsewhere and it deserves its own thread.

    Please, please send the email below - the decision on Ampligen is expected in the next few days.


    Bob Miller on Hunger Strike

    Please support my husband, Robert Miller, in his hunger strike to get FDA approval for Ampligen. Bob and I ask that other patients do Not follow this action. We need you to be our voices and advocates with the agencies and your Congress-people.

    From Robert:

    Yesterday January 29th, I began a hunger strike seeking FDA approval of Ampligen, the only medication in FDA-approved clinical trials for Chronic Fatigue Syndrome, (ME/CFS).

    The FDA Advisory Committee voted Ampligen is safe given the serious nature of CFS and the critical unmet need of patients.

    Please support access to Ampligen for ALL ME/CFS PATIENTS by sending a note like the one below to the Secretary of Health Kathleen Sebelius, Assistant Secretary of Health Dr. Howard Koh, FDA Commissioner Dr. Margaret Hamburg, and FDA CDER Director Dr. Janet Woodcock and Deputy Director Dr. Sandra Kweder.

    You can just copy and paste the emails below, there is also a Template to use as a guide.

    Please also email or call your Congressional Representatives and Senators (look them up Here:Just click on your state, http://www.contactingthecongress.org/) and ask them to investigate why the FDA refuses to approve the ONLY medication for CFS despite safe testing for 20 years. This is a health crisis!

    Email To: kathleen.sebelius@hhs.gov, margaret.hamburg@fda.hhs.gov,janet.woodcock@fda.hhs.gov, sandra.kweder@fda.hhs.gov, howard.koh@hhs.gov, ash@hhs.gov,bobmiller42@gmail.com

    Subject: CFS Patient starts hunger strike for FDA approval of Ampligen

    “Long-time ME/CFS patient Robert Miller from Reno, Nevada began a hunger strike in advance of the FDA’s Feb. 2nd, deadline to decide on Ampligen, the ONLY medication in clinical trials for my illness. I support Mr. Miller because my life has been stolen by ME/CFS and I need real treatment options. We have waited 20 years, and we can’t wait any longer. The FDA Advisory Committee voted Ampligen is safe enough to market because CFS is so serious and there are NO medications to treat patients. Please don’t let the FDA reject the only medication CFS patients can hope for any time soon.”

    Your Full Name Here:
    Address Here:
    Years ill​
    BEG and taniaaust1 like this.
  2. Sasha

    Sasha Fine, thank you

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    Just sent my own email.
  3. Kati

    Kati Patient in training

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    Done! Best wishes to Bob and his family.
    It's pretty sad we got to resort to this but it is needed.

    I support this 100%
    Sasha likes this.
  4. Nielk

    Nielk

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    Just e-mailed my letter.
    Sasha likes this.
  5. snowathlete

    snowathlete

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    snap
    Sasha likes this.
  6. Merry

    Merry Senior Member

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    Done.
    Sasha likes this.
  7. Sasha

    Sasha Fine, thank you

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    Thanks for emailing, everyone, and for posting here that you've done it - it really helps to encourage other people.
  8. LaurelW

    LaurelW Senior Member

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    Done. My loving thoughts are with you, Bob and Courtney.
    Sasha likes this.
  9. BEG

    BEG Senior Member

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    Done. Thanks, Bob, for your willingness to take on such an extreme measure. Take care of yourself.
    Sasha likes this.
  10. Sasha

    Sasha Fine, thank you

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    Yes, this really is an extreme step for someone to take. Let's not let it be in vain.

    Thanks, Bob, for what you're doing and I'd echo everyone's sentiments - please take very good care of yourself.
  11. caledonia

    caledonia

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    I sent emails to the FDA people. Can somebody post a template of what to say to Congress people?
  12. Sasha

    Sasha Fine, thank you

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    I've posted that request on Bob's Facebook page and asked him or Courtney to post on this thread:

    https://www.facebook.com/events/331743983596221/permalink/331789583591661/?notif_t=like

    Anyone else should feel free in the meantime, though - I'd do it myself but as a non-US person I don't understand the role of the politicians at this point. If you don't see anything in the next few hours I don't think you have anything to lose by using the same text!
  13. Kati

    Kati Patient in training

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    Bump. This is serious business. Please take a moment to send emails.
    BEG and Sasha like this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Done
    Sasha and Kati like this.
  15. chili

    chili

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    I'm also one of the Incline Village patients on Ampligen who is getting a LOT better. I also happen to be a doctor, and people, this stuff works-and it may be taken away from us. I can name at least 4 people here who will end up in a wheelchair or bedridden, perhaps permanently, if this happens. Please email your elected representatives and the FDA ASAP.
    Sasha and Kati like this.
  16. Marg

    Marg Senior Member

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    I think I have 18 more, if they see it tonight or early morning.
  17. Sasha

    Sasha Fine, thank you

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    Brilliant! Thanks, Marg.
  18. Sasha

    Sasha Fine, thank you

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    Bumping...

    This is very urgent - we must do this today. The decision is expected any time now.
    Kati likes this.
  19. Countrygirl

    Countrygirl Senior Member

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  20. Jarod

    Jarod Senior Member

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    planet earth

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