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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Bob Miller's press release - do you have media contacts?

Discussion in 'Action Alerts and Advocacy' started by Sasha, Feb 4, 2013.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    7,867
    Likes:
    6,276
    UK
    Just seen this on Mindy Kitei's blog, where there's also some commentary from her worth reading :

    FOR IMMEDIATE RELEASE

    Contact: Bob Miller and Courtney Miller
    (telephone number removed)
    Email: bobmiller42@msn.com

    PATIENT ON HUNGER STRIKE GAINING ATTENTION
    Well-known Journalist and Long-time AIDS Activist Offer Support

    Calling attention to the plight of one million disabled Americans suffering with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), patient Robert Miller continues his hunger strike -- and it is gaining attention from a well-known journalist and a long-time HIV/AIDS activist, as well as an NBC affiliate in Nevada.

    These new developments come as we wait for the Food and Drug Administration's decision, due Monday, Feb 4, 2013, on whether or not it will approve Ampligen, the first medication ever considered by the FDA for ME/CFS. This illness disables one million Americans, leaving many bedridden, homebound and suffering for decades on end with little hope for recovery and little help from the U.S. government, which dedicates a mere $6 million dollars each year to ME/CFS research.

    First, well-known HIV/AIDS activist, Cleve Jones, founder of the AIDS quilt project, came out in support of ME/CFS patient Robert Miller's hunger strike. Mr. Jones writes: “My friend is on a hunger strike to get the first medicine approved for his severe case of chronic fatigue syndrome. FDA is likely to deny the drug this weekend. We know we wouldn’t be where we are today if some of us hadn’t protested inaction by federal agencies on AIDS treatments. Email: kathleen.sebelius@hhs.gov Urge FDA to approve Ampligen, so all CFS patients can have just one treatment option. CFS patients suffer without any treatments, and I can remember those days in my life. I urge Secretary Sebelius to approve Ampligen for CFS and apply what we learned with HIV about getting treatments to patients like every minute counts.”

    Secondly, long-time Washington DC journalist, Llewellyn King, commented on ME/CFS sufferer Robert Miller's hunger strike on his PBS television program, "White House Chronicle." It is airing this weekend on PBS stations in Washington --Sunday, Feb. 3 at 9 a.m. on WETA, Channel 26; Sunday at 11:30 a.m. and 6:30 p.m. on WHUT, Channel 32. It will air throughout the week on some 200 PBS and public, educational and governmental cable TV stations and worldwide on Voice of America Television. An audio version of the episode will air Saturday, Feb. 2 at 9:30 a.m., 3:30 p.m. and 9:30 p.m. on Sirius XM Radio's POTUS (Politics of the United States) Channel 124. The episode will be posted on the "White House Chronicle" Web site, whchronicle.com, on Monday, Feb. 4.

    Lastly, NBC's Reno, Nevada affiliate has covered the hunger strike: http://www.mynews4.com/news/local/story/Patients-fight-for-FDA-to-approve-drug-application/zuCxhkI0eUOiECmK_McvmA.cspx

    Activist Rivka Solomon, a Boston-area playwright who has spent 23 years disabled by ME/CFS, much of it homebound and bedridden, states, "One million disabled Americans feel abandoned by their government for over two decades. They feel this can not continue and that they have no choice but to take extraordinary measures, such as a hunger strike, to get the help they need from the U.S. government. I support Robert Miller and other patients who are doing all they can to get us the medications we need to help us survive. We hope the FDA cares enough about its disabled citizens to approve Ampligen."

    # # #

    If you'd like more information about this topic, or to schedule an interview with Robert Miller, please call 703-554-5575 or email bobmiller42@msn.com
    snowathlete likes this.
  2. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,779

    Will the FDA decision be released today? I notice this discouraging post from Friday:
  3. Sasha

    Sasha Fine, thank you

    Messages:
    7,867
    Likes:
    6,276
    UK
    Hi Ember - Cort said on his blog that he thought the decision would be today but I don't know what that was based on or whether it's something that could change if the FDA starts to respond to pressure. I think we just have to keep the pressure up until we hear a decision.

    I don't recognise that quote but I find it hard to believe that Hemispherx would leave Bob Miller on his hunger strike a minute longer than necessary. I would expect an immediate announcement.
  4. dannybex

    dannybex Senior Member

    Messages:
    2,167
    Likes:
    514
    Seattle
    Do they know he's on a hunger strike?
  5. Sasha

    Sasha Fine, thank you

    Messages:
    7,867
    Likes:
    6,276
    UK
    It would be amazing if they didn't - I would have thought he would have told them himself, at least! :)
  6. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    Just called Hemispherx Biopharma in Philadelphia. Said I was a CFS patient, and a fellow patient was on his 6th day of a hunger strike to get FDA approval for ampligen. Also said that the community was emailing daily to the FDA with over 750 people participating. I asked about an FDA meeeting and if they knew the outcome.

    I was on hold for quite awhile, then was told I needed to speak to Diane Will, Investor Relations. (518) - 398 - 6222. I got her voicemail and left basically the same message above. I also told her there was a press release.

    I'm worried about Bob, and afraid we won't get any kind of answer. I'm feeling we need to put this one to bed (so to speak).
  7. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    92
    Utah
    Thanks so much for doing that, BEG.
    BEG and justy like this.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    7,867
    Likes:
    6,276
    UK
    Good move, BEG - it didn't even occur to me that Hemispherx wouldn't know about Bob.
  9. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    Diane Will called me. It seems the FDA gives/issues (?) PDUFA DATES at which time they give their yes/no to a drug. If the PDUFA DATE will be extended by the FDA, the company is notified. Diane says that she has seen extensions as short as 1 -2 days and as long as 4 -5 months, but that the FDA does try to be on time. The latest PDUFA date for Ampligen was Saturday, so it has apparently already been extended. Hemispherx Biopharma is now on PDUFA #5 for ampligen. Incidentally, the company pays a fee for a PDUFA date. Biopharma will issue a press release when they know something.

    PDUFA (pronounced 'pidufa') is an acronym which I quickly forgot as she told me. FOG!

    She was interested in the press release on CFS Central and I emailed her the link.

    http://www.cfscentral.com/2013/02/hamlet-without-hamlet.html?m=1
  10. Sasha

    Sasha Fine, thank you

    Messages:
    7,867
    Likes:
    6,276
    UK
    Wow, Agent BEG is on the case! :thumbsup:
    BEG likes this.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,601
    Likes:
    5,392
    Albuquerque
    Nico and BEG like this.
  12. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    Interesting. Their stock is down again, too.

    Forgot to mention that Diane Will said someone had already emailed her a PDF file which she thought was the press release that I sent her. She was driving and couldn't take a look at it.

    I sensed that Diane has empathy for Bob. Said, "So sad . . .."
  13. dannybex

    dannybex Senior Member

    Messages:
    2,167
    Likes:
    514
    Seattle
    Thanks for calling her and posting this. It does seem odd that it sounds like she didn't know if it's been extended or not. (???)

    Anyway, thanks for emailing her the link to the article -- that should hopefully help speed things up on their end regarding issuing at least some sort of official press release, so that Bob can stop his hunger strike.
  14. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    404
    Upstate SC, USA
    FDA disapproved it again!

See more popular forum discussions.

Share This Page