1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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Time for Action - easy daily advocacy campaign

Discussion in 'Action Alerts and Advocacy' started by jace, Oct 4, 2010.

  1. mezombie

    mezombie Senior Member

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    East Coast city, USA
    1089 emails were sent as of noon on Saturday according to Bob. Faxes and phone calls have been harder to track.

    He'll report on the final figure at the CFSAC meeting.
  2. jspotila

    jspotila Senior Member

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    FABULOUS! :victory:
  3. Tuha

    Tuha Senior Member

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    Collins is out of office - he got annoyed of the emails :)
    "I will be away on official travel until October 17. Urgent matters should be brought to the attention of Susan Persons at . Should official actions be needed during this time, Dr. Larry Tabak (the Principal Deputy Director), has that authority.

    Francis S. Collins, M.D., Ph.D."
  4. VillageLife

    VillageLife Senior Member

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    United Kingdom
    Hopefully we won't need to email him anymore after CFSAC meeting. :)
  5. citybug

    citybug Senior Member

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    NY
    If anyone wants to write letters in addition, here are their addresses. I sent postcards. I can't help doing Kathleen Sebelius too.
    I don't want to distract from emails first. Amazing totals! I forgot to cc yesterday.

    Sec. Kathleen Sebelius
    Health and Human Services
    Room 120F
    200 Independence Ave. S.W.
    Washington, D.C. 20201

    Dir. Francis S Collins
    NIH
    Building 1 - Shannon Building, 126
    1 Center Dr
    Bethesda, MD 20892

    Dir.Anthony S. Fauci, M.D.
    NIAID
    Bldg. 31, Rm. 7A-03
    31 Center Drive
    MSC 2520
    Bethesda, MD 20892-2520
  6. Frank

    Frank Senior Member

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    Europe
    just send some mails
  7. RivkaRivka

    RivkaRivka Senior Member

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    GREAT. thank you, frank. i'm about to fax now!

    do people see the patients and advocates sitting in the front row in the audience, right behind the presenter? they are wearing the t-shirts bob made that say (in neon green) "NIH, WHAT HAVE YOU DONE FOR ME/CFS TODAY?" they plan to do an advocacy action during the public testimony time. please watch.
  8. rebecca1995

    rebecca1995 Apple, anyone?

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    Northeastern US
    I meant to report earlier that I called both offices last week and it went really well. I kept each admin. assistant on the phone as long as possible--and they turned out to be quite sympathetic. I made sure they wrote down the famous question, then went into a lot more detail about my history. I gave information that was both personal (about my handicaps) and general, about how our government downplayed the disease by naming it "cfs" and how it may be caused by an infectious retrovirus that's in up to 7% of the blood supply.

    The people I talked to said they had never even heard of this disease, but they are getting a lot of calls. They sounded pretty worried about me, to be frank.

    My advice is to keep calling and to tie up their phone lines as long as you reasonably can. Tell your whole story to the people who answer AND to the communications office when they transfer you.

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