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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 1, 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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    Dreambirdie posted this message recently with an additional, important, urgent and quick action to take if you're in the US:

    Bob posted this on Facebook today:​

    "Patients who are able can call NBC News at 212-664-4444 and comment on the story below. Be sure to tell the person who answers why you are calling, they will put you through to a comment line where you can request for them to plesae cover this important News story Nationally, be sure to tell them where you are calling from.​

    Many thanks to All who are helping, my wife and I could not do this without your help and support.​

    Kindly, Bob"​

    THIS IS THE STORY he is referring to: http://www.nbcnews.com/id/50666787
  3. Sasha

    Sasha Fine, thank you

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  4. SickOfSickness

    SickOfSickness Senior Member

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    Thanks for the template.
  5. maryb

    maryb iherb code TAK122

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    Sent the e-mails - hope something good comes of his efforts.
  6. Sasha

    Sasha Fine, thank you

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    I think you've got Mark to thank for that! :)
  7. Nico

    Nico Senior Member

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    someone commenting on Bob Miller's FB page said that she has been re-directed to send an email to NBC when she called the phone number. The email is: story@nbcuni.com
    Merry and SickOfSickness like this.
  8. Sasha

    Sasha Fine, thank you

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    Thanks, Nico - I'll post that on the thread I started on the NBC thing.
  9. GcMAF Australia

    GcMAF Australia Senior Member

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    Done and dusted
    from Australia
    and for K2
    No Worries
    &
    She'll be Apples
  10. Sasha

    Sasha Fine, thank you

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    No idea what that means but it sounds promising!
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    Australian saying
    dont worry things will work out,
    might take a bit of time tho
    dont worry be happy
    i know it is a big call
  12. Tally

    Tally Senior Member

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    Please help non-native speaker to send this e-mail. Should I add "Dear Sirs and Madams" at the beginning?
  13. Sasha

    Sasha Fine, thank you

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    Hi Tally - I didn't put anything at all at the beginning of mine!
  14. Sasha

    Sasha Fine, thank you

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    Bob posted this on his Facebook page a few hours ago:

    A fast thank you for all the support, no matter the decision we must work together just as you all have been doing the past few days. Maybe it's the lack of food, but I have not seen our community this United for some time. You All are Awesome.

    Bob
    BEG, Merry and Kati like this.
  15. Merry

    Merry Senior Member

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    Columbus, Ohio, USA
    Last evening I emailed NBC (using the address Nico provided) to ask that the story produced by their Reno affiliate be carried nationally.
    BEG and Sasha like this.
  16. Research 1st

    Research 1st

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    Hi, am I correct in thinking the second Ampligen FDA meeting is today or is it monday? Thank you.
  17. Sasha

    Sasha Fine, thank you

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    We've been told for a long time to expect a decision to be announced around Feb 2nd which of course is today and weirdly is a Saturday! That's all I know - anybody know any more?

    Presumably the FDA can push that back if they feel they need more time so let's just keep piling on the pressure until we hear a decision.
  18. wdb

    wdb Admin

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    Has backing this tactic really been thought through, do we want to be promoting the message that hunger strike is a legitimate campaigning tool. I fully support cause and publicising the supporting evidence but the decision should be based on the strength of the evidence alone not coerced under threat of self harm. It may well even backfire as decision makers would not want to risk it appearing as if such actions are effective.
  19. Research 1st

    Research 1st

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    Thanks for the reply Sasha I'm glad I got the right day and yes a Saturday at the weekend, a day when the media are less active and news can be more easily deflected.

    wdb, I think Bob is very ill and probably needs Ampligen to have any function. In that circumstance I can understand why he would go on hunger strike to make a point for the FDA to approve it to himself and others. The drug is probably very hard to get and he likely has to travel a long way if he doesn't live locally to where it can be administered. I expect this is a short term protest as the decision is due any moment...we hope!
  20. Sasha

    Sasha Fine, thank you

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    Hi wbd - that's an interesting point. I guess we'll all have our own personal perspective on this.

    For me, I think that what Bob is doing underlines the seriousness of the situation. People don't go on hunger strike for trivial reasons and our big problem with ME has been the perception of our disease as trivial.

    It's easier for organisations to make self-serving and poor decisions when they're not being scrutinised. A hunger strike has a good chance of getting media attention onto this and getting people asking the FDA difficult questions. I think it's going to help to get a big spotlight shining on the FDA.
    BEG likes this.

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