1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Form a group like ACT-UP?

Discussion in 'Action Alerts and Advocacy' started by bee33, Nov 2, 2009.

  1. bee33


    I'm new to this forum, so I may be out of place. Apologies if I am.

    I myself feel very energized by the discovery of XMRV and I've noticed many others are too. Until now I've been feeling so discouraged that I didn't even follow a lot of news or discussions on CFS and FM because it made me feel even more discouraged to delve into the reality of this illness.

    But now that we're riding this wave, I think it's the right time to form a vociferous patient-centered advocacy group, not just for more research but for the very important public recognition of this disease, so we don't have to feel embarrassed to tell people we have CFS. (On another website, several people mentioned they'd rather say they have FM than CFS because it sounds a bit more like a real disease. I'm ashamed to say I feel the same way!)

    I know there are some really good groups out there already, but I think we need something like what ACT-UP did for AIDS/HIV advocacy, to be in-your-face and demanding of respect, with loud campaigns and creative demonstrations that demand public attention and recognition.

    Ironically, I don't know how much energy I could devote to this because I'm so tired, and I know many of you are in that exact same boat. But we also have a lot of healthy family members and friends who can help.

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