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Dr Alan Gurwitt's roadmap for US advocacy for ME/CFS

Discussion in 'Advocacy Projects' started by Sasha, Jun 13, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Interesting guest piece on Jennie Spotila's blog by Dr Alan Gurwitt:

    http://www.occupycfs.com/2015/06/13/stuck-four-months-of-almost-nothing/

    He's attempting to provide a roadmap forward.

    One issue he brings up is the need for a national ME/CFS organisation, which does indeed seem long overdue. Some interesting comments on that. As an outsider, it seems odd to me that there's no national organisation for the US. In the UK, we've got four major ones and a load of others. I know we're only a fifth the size of the US in terms of population, but still! Is it normal for diseases to only have charities at the state level rather than national level in the US? Are there special difficulties in setting up something national?

    I'm aware of the problems with the CAA (now Solve ME/CFS) but is it surprising that nothing else has emerged to take its place as a national group?

    Some interesting comments already.

    Thanks for hosting the post, @jspotila! :thumbsup:
     
    Never Give Up, SOC, Valentijn and 2 others like this.
  2. Sean

    Sean Senior Member

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    In fairness to us, and among other reasons, we need to wait on the final P2P report before we have a clear picture of what we have to work with.

    But otherwise, yes.
     
    Never Give Up and Kati like this.
  3. Sasha

    Sasha Fine, thank you

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    catly, aimossy, Sean and 1 other person like this.

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