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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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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