1. Patients launch a $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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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PETITION for AN APOLOGY RE: ME/CFS (to Assistant Sec.of Health)

Discussion in 'Petitions' started by Dreambirdie, Oct 24, 2011.

  1. Dreambirdie

    Dreambirdie work in progress

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    Enid and mezombie like this.
  2. Dreambirdie

    Dreambirdie work in progress

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    HEY, WHERE IS EVERYBODY! Please take a moment to sign this petition.

    THere are 208 signatures already. The goal is 500. Please sign.
  3. Gamboa

    Gamboa Senior Member

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    Canada
    Done.

    Come on everyone else: please sign .
  4. Dreambirdie

    Dreambirdie work in progress

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    224 signatures as of 11 am. MORE NEEDED!
  5. Sasha

    Sasha Fine, thank you

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    UK
    Hi Dreambirdie - are non-US people allowed to sign?
  6. Nielk

    Nielk

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    I signed it yesterday.
  7. Dreambirdie

    Dreambirdie work in progress

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    I am not sure. But I would do it anyway.
  8. Dreambirdie

    Dreambirdie work in progress

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    Great! Thanks.
  9. Dreambirdie

    Dreambirdie work in progress

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    HALF WAY there at this point--250 signed already ay 4:27 pm today.
  10. Guido den Broeder

    Guido den Broeder *****

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    Rotterdam, The Netherlands
    Don't make this a petition.

    It's a demand!
  11. Nielk

    Nielk

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    As much as we would like to, we can't hold a gun to his head (although i can't say I don't like that image)
  12. Sasha

    Sasha Fine, thank you

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    Thanks - done!
  13. Dreambirdie

    Dreambirdie work in progress

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    266 people have signed so far.

    Please sign and pass it along... the more the better!
  14. leela

    leela Slow But Hopeful

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    Couchland, USA
    done. 288 now.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Done!

    Sushi
  16. Dreambirdie

    Dreambirdie work in progress

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  17. Dreambirdie

    Dreambirdie work in progress

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    332 signatures as of this morning.

    Keep 'em coming! We're doing well.
  18. mezombie

    mezombie Senior Member

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    This is the message that will be sent to Secretary Sebelius and six other health officials when you sign:

    Greetings,

    I just signed the following petition addressed to: Kathleen Sebelius, Kathleen.Sebelius@hhs.gov.

    ----------------
    Apologize for not responding appropriately to the ME/CFS epidemic.

    Bjrn Guldvog, Deputy Director General of the Norwegian Directorate of Health, recently made the following statement in response to a published study indicating the cancer drug Rituximab is an effective treatment for ME/CFS:

    "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

    Follow the Norwegian Health Minister's example.

    In addition, we ask that you:

    1. Double the current NIH funding for extramural research. Priority should be given to research on biomarkers and potential pathogens as well as clinical trials.

    2. Take down information on the CDC's CFS website stating testing for pathogens and biomarkers is "experimental and theoretical" and that GET and CBT are appropriate treatments.

    ----------------

    Sincerely,
  19. Dreambirdie

    Dreambirdie work in progress

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    364 signatures as of this morning.

    Less than 150 to go.
  20. Dreambirdie

    Dreambirdie work in progress

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    I want to add that the patient comments are *awesome.* Please check them out.
    It breaks my heart to read about how many lives this illness has destroyed.

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