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Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

by Sasha

Bob-Miller-2011-Ottawa-ConferenceBob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same.

Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to add pressure to approve Ampligen as a therapy for ME/CFS.

The FDA is expected to announced its decision sometime around Sunday 2nd February – this Sunday – so there’s no time to lose.

Wherever you are in the world, please use Bob’s template to email, and do it right now. It takes less than a minute: I’ve already sent mine.

Bob’s message

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 email below.

Please also email or call your Congressional Representatives and Senators (look them up here and just click on your state) 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!

The email

Click here to create your email automatically – all you then need to do is add your name, address, and number of years ill, and any personal message you’d like to add, and click Send.

To: kathleen.sebelius@hhs.govmargaret.hamburg@fda.hhs.gov, janet.woodcock@fda.hhs.gov

sandra.kweder@fda.hhs.gov, howard.koh@hhs.govash@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:

  

Support Phoenix Rising

 

{ 69 comments… add one }

  • Enid February 4, 2013, 3:10 pm

    I've done that Mark again and again – it's utter nonsence to say "safe" and yet not approve.

  • BEG February 4, 2013, 3:11 pm
    Sasha

    Just sent another email telling them it's day 6 of Bob's hunger strike…

    Will be doing it, too!

  • SpecialK82 February 4, 2013, 5:59 pm
    Rooney

    I'm going to call the Wall Street Journal, 212.416.2000 and the Washington Post, 212.334.6000 and USA Today,
    703.276.3400 about our campaign and the interesting delay. I read it's best to call directly to get a news story in a paper. Perhaps our efforts are having some effect as I imagine it's strange for the FDA to overshoot a due date.

    Good luck to us all. Take care Bob.

    Rooney just sparked an idea in me, and I sent an email to Amy Dockerson Marcus of the Wall Street Journal along with Bob's press release. Unfortunately, the email bounced back to me saying "server error: invalid recepient". I obtained her address from a recent article that she wrote in Jan 2013. If anyone has another address besides amy.marcus@wsj.com please let me know. Otherwise, I will try sending again this afternoon directly from my email instead of using the link from the WSJ.

    Hang in everyone and prayers going up for Bob!

  • John789 February 4, 2013, 6:36 pm

    My prayers are with you Bob in your effort. I hope I am wrong, but it doesn't look good considering the approval date has come and gone with no news from the FDA.

  • Sasha February 4, 2013, 6:39 pm
    SpecialK82

    Rooney just sparked an idea in me, and I sent an email to Amy Dockerson Marcus of the Wall Street Journal along with Bob's press release. Unfortunately, the email bounced back to me saying "server error: invalid recepient". I obtained her address from a recent article that she wrote in Jan 2013. If anyone has another address besides amy.marcus@wsj.com please let me know. Otherwise, I will try sending again this afternoon directly from my email instead of using the link from the WSJ.

    Hang in everyone and prayers going up for Bob!

    Good idea – she seems to have a LinkedIn page but I've no clue how to access that stuff:

    http://www.linkedin.com/pub/amy-dockser-marcus/7/9b7/b24

    Can she be phoned at the WSJ?

  • Kati February 4, 2013, 6:46 pm
    Sasha

    Thanks, Kati – Bob says in this video (in which he really doesn't appear well at all and says he was going into kidney failure so is now on a saline drip) that he wants us to keep emailing and (for US people) writing to our representatives, use our media contacts and send any contacts to him at bobmiller42 [a] gmail.com.

    He says it's looking unlikely that Ampligen will be approved by the FDA and that the decision might come today – but he's clearly got some plans for what to do if the decision goes against us.

    I don't believe Bob said he was on IV saline, he said he was drinking a saline solution

  • Sasha February 4, 2013, 7:04 pm
    Kati

    I don't believe Bob said he was on IV saline, he said he was drinking a saline solution

    My mistake! Thanks, Kati.

  • Kati February 4, 2013, 7:12 pm

    No problem Sasha, I wanted to make sure readers get the right info in case they pass it on.

  • caledonia February 4, 2013, 8:48 pm

    If you click on the YouTube link on Bob's video, then it will open up in YouTube. Then click on the Share tab. You can share the video on your Facebook, Twitter etc. I've been doing a Facebook share for each new video.

  • garcia February 4, 2013, 8:50 pm
    Sasha

    Good idea – she seems to have a LinkedIn page but I've no clue how to access that stuff:

    http://www.linkedin.com/pub/amy-dockser-marcus/7/9b7/b24

    Can she be phoned at the WSJ?

    Try amydmarcus{at}aol.com

  • RUkiddingME February 4, 2013, 9:10 pm
  • Ember February 4, 2013, 9:23 pm
    garcia

    Try amydmarcus{at}aol.com

    Write to Amy Dockser Marcus at amy.marcus@wsj.com.

    edit: Oops. I see now that this address didn't work for SpecialK82.

  • caledonia February 4, 2013, 9:37 pm
    BobM

    Hi all, Day 6… I am low on energy, but I would like to make a few thing clear:
    1. I am not doing this only for the approval of Ampligen, that is only a heavy straw FDA has placed on our illness, I do this for the patients suffering daily, and yes that includes me, but I have children and what if one day they get ill, I must do whatever it takes to Awaken our federal health agencies.
    2.As far as what will the medical establishment think, I can only tell you what the experts in the field think including CFSAC, they know me and know I am of sound mind and that includes FDA and HHS.
    3.The evidence, if one is unwilling to hear the evidence, it does not matter what one says. At the FDA panel meeting, the Sponsor tried to address concerns of FDA several time, but the chair would not recognize the Sponsor to respond. You will need to watch the Webcast.

    Thank you all for the support,
    Bob Miller

    Who is the Sponsor and where is this Webcast? I would like to see it. Probably wouldn't hurt to send a copy of it to the journalists if that's part of our complaint.

  • Sasha February 4, 2013, 9:52 pm
    caledonia

    Who is the Sponsor and where is this Webcast? I would like to see it. Probably wouldn't hurt to send a copy of it to the journalists if that's part of our complaint.

    I think the sponsor was Hemispherx. I don't know if the webcast was posted.

  • dannybex February 4, 2013, 10:37 pm
    Sasha

    I think the sponsor was Hemispherx. I don't know if the webcast was posted.

    I don't think it was…weren't the circuits (or whatever you call 'em) overloaded, so portions of the webcast went down several times?

    I have a feeling the decision has been made, and it's not a good one. Perhaps people should be swamping Hemipherx with emails rather than the FDA?

  • dannybex February 4, 2013, 10:43 pm

    From their website:


    Contact:
    Hemispherx Biopharma, Inc.,
    Dianne Will, Investor Relations
    (518) 398-6222
    ir@hemispherx.net
    HEB's Web Site: http://www.hemispherx.net

  • Kati February 4, 2013, 10:45 pm

    And dannybex, what do you want us to tell Hemispherx?

  • dannybex February 5, 2013, 3:20 am
    Kati

    And dannybex, what do you want us to tell Hemispherx?

    Well, I'd like them to be more honest in the future. They've had a terrible track record when it comes to being open and honest with the public and with patients — lying in June 2009 suggesting that the FDA was close to approving Ampligen is just one example of many. They've implied they didn't have enough funds to run a new trial that the FDA asked for three years ago, even though the stock went up from something like 30 cents to over 4 DOLLARS in June of that year. There are records of the executives selling their own shares of Hemispherx stock — something that would only cause the stock to go down — why did they not BUY more stock? On and on and on…

    I hope Bob will reconsider and stop his hunger strike, for his own sake.

  • Kati February 5, 2013, 3:52 am

    Certainly Hemispherx is in hot water as they are dealing with investors's class action suit. I really wish we were a credible illness and that a respectable (and rich) pharma company to do drug development, clinical trials and get drugs approved at long last!