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American ME and CFS Society - new national ME/CFS organisation, now live

Discussion in 'General ME/CFS News' started by Sasha, Nov 11, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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  2. dannybex

    dannybex Established Member (Voting Rights)

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  3. Trish

    Trish Senior Member (Voting Rights)

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    It looks like this is the brainchild of Erica Verillo. The website is very impressive, with all the sort of sections you would expect on the website of an active organisation and a very extensive library.

    It seems the website has been in development for 4 years, and has just been launched, but there is no indication that they have members yet. The only people mentioned are Erica and a Board Chair. They are looking for other board members.

    I note that their supporters are listed as Solve, OMF and Health Rising, with Cort Johnson (described as founder of PR and HR and writer of blogs) and David Tuller named. It implies support of HR as the provider of active patient forums.
     
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  4. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    The board chair is Marcie Zinn

    http://me-pedia.org/wiki/Marcie_Zinn
     
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  5. Trish

    Trish Senior Member (Voting Rights)

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    I know nothing about the politics of ME in the USA. Does anyone have any opinion or knowledge of how this organisation is likely to fare, especially given that they seem to promote HR as the active ME patient forum.
     
  6. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    I know very little too. They've listed Cort as a supporter on the 'about us' page, mentioning his blogs and HR and PR. I don't think is a surprise, since Cort seems to be adept at cultivating links.

    In the support section they promote the following forums:
    Phoenix Rising
    Health Rising
    ProHealth
    ME-CFSCommunity
    ME/CFS Forums


    Weird to have given a link to ME/CFS Forums because the link is defunct and AFAIK that forum packed in a while ago.
     
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  7. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    Given that the website has been in development for 4 years, I am not surprised that they have a defunct link or list connections with people whose behavior has since become questionable. Perhaps that relationship is defunct as well.

    I know nothing about the organization, so can offer no opinion. I'm just saying don't be too quick to judge.
     
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    Apparently the website has been live since September and the only sign of it that I'm aware of has been that article on #MEA. It gives the impression of being short of people and energy at this stage, which is understandable for PWME.
     

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