1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Nothing against Lupus!

Discussion in 'Action Alerts and Advocacy' started by jimbob, Apr 19, 2010.

  1. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
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    9
    myrtle beach, s.c.
    Two nights ago local news had coverage of a fundraising event in our city. It was for Lupus and there were hundreds of people walking. At the end of the piece they announced they had raised $20,000.00! I thought would'nt that be nice if I could do that for me/cfs, but then reality set in when I realized that 99% of the population doesn't have a clue what cfs/me is! It's a crying shame, that after all these years, we are still hidden in the shadows!
     
  2. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    I feel the same way when ever there is an MS bike or walkathon. My symptoms are almost identical to MS but there are no walkathons for us. we are invisible and it took alot of work by many people to make sure we stay invisible.
     

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