A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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The Time is N.O.W. - National Women's Advocacy Organization Joins the Fight for ME/CFS

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Aug 14, 2017.

  1. AndyPR

    AndyPR Senior Member

    https://www.healthrising.org/forums...organization-joins-the-fight-for-me-cfs.5525/
     
  2. slysaint

    slysaint Senior Member

    Messages:
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    from may 2017
    "
    Issue Advisory: Research Needed for ME/CFS
    By Kathryn Gimborys, NOW Public Policy Intern, with contributions from Rivka Solomon and Emily Taylor, of Solve ME/CFS Initiative, May 10, 2017
    ISSUE ADVISORY: NOW Foundation Women’s Health: Research needed on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neglected and Misdiagnosed Disease that Strikes Mostly Women"

    http://now.org/update/issue-advisory-now-foundation-womens-health/
     
    MEMum, Sean, Solstice and 6 others like this.
  3. Emily Taylor

    Emily Taylor

    Messages:
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    Los Angeles, CA
    Hi Everyone -

    Please hold off (for now) on sharing the Issue Advisory. N.O.W. would like to make some changes to this document before it is cleared for wide distribution. I will be sure to share it when it has the green-light for promotion.

    Many thanks,

    ~Emily
     
  4. RivkaRivka

    RivkaRivka Senior Member

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    Hi all, this National Organization for Women "Issue Advisory" has been updated and had the necessary corrections made to it. We can now publicize it, if we wish. Here is it:

    http://now.org/update/issue-advisory-now-foundation-womens-health/

    ISSUE ADVISORY: NOW Foundation Women’s Health: Research needed on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neglected and Misdiagnosed Disease that Strikes Mostly Women

    May 12, 2017

    Rivka’s Mysterious Illness – When NOW member Rivka Solomon was 21 years old, she contracted mononucleosis. However, instead of recovering normally, she remained sick and incapacitated for a year. She was forced to withdraw from her social activities, she was unable to leave her home, and she was unable to exert any physical and intellectual energy without experiencing subsequent extreme exhaustion and physical pain.

    However, all her medical tests came back negative, and no doctor could find a cause, let alone a cure, for the condition that had devastated Rivka’s life. After a few years of spontaneous remission, her symptoms returned and she was once again forced to put her life on hold. As Rivka herself puts it “my body just collapsed.” ...

    (The article goes on from there!)
     
  5. Anne

    Anne Senior Member

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    @Emily Taylor

    It would be most helpful to be able to show the NOW letter to Congress from August to women's organizations in other countries.

    Is it OK to share the August letter now? Do you have a link where it's available?
     

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