1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
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Dr. Jamie Deckoff-Jones Blog for February 26, 2011

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mya Symons, Feb 27, 2011.

  1. Mya Symons

    Mya Symons Mya Symons

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    Wyoming
    After reading the letter from the Pen Pal I realized that I was wrong, there are people with CFS who are treated like someone would be treated in a concentration camp. My son could be in a similar situation some day. Civil Disobedience may be the best answer.

    http://treatingxmrv.blogspot.com/
  2. RivkaRivka

    RivkaRivka Senior Member

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    a gentle reminder to all:

    ACTING UP in a group way would be great. and we should do it -- need to do it!

    but in the mean time, until we can organize that, ACTING UP does not have to be a group effort and it is not as hard and difficult as you may think (for those who are not bedridden).

    it can be one person with a sign standing in front of your local hospital, gov't office, red cross building or the Wash DC HHS (Health and Human Services) headquarters. it can be one person with a sign at wherever NIH's director, Dr. Collins, is publicly speaking that week.

    getting media there would help, of course. but if not, drag a friend and have her shoot it to post on YouTube. then email it to the media.

    the below videos are related to my own M.E. and Chronic Fatigue Syndrome (ME/CFS) activism.

    http://www.youtube.com/watch?v=ME764z_4vEY
    (5 min serious video of my one-women protest in front of Health and Human Services and Red Cross Nat'l Headquarters.)

    http://www.youtube.com/watch?v=8t1Xqp1LDxM
    (5 min comedic singing bedroom video, with me and my family)

    http://www.youtube.com/watch?v=1DSzTCYPAvs
    (5 min comedic video pressuring the Red Cross to ban ME/CFS blood donations. the resulting campaign, coupled with the actions of other individuals and groups, was a success! within days, the Red Cross came out with a press release stating they were banning folks with ME/CFS from donating blood)

    best,
    rivka

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