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Open The NIH Intramural Post-Infectious ME/CFS Study: A Patient-Study Participant Perspective (from the e-newsletter of the Solve ME/CFS Initiative)

Discussion in 'Recruitment into current ME/CFS research studies' started by Tom Kindlon, Apr 14, 2019.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I would have preferred to share a link to where they have posted this but I can't find any such link.
    Here are their social media accounts:
    https://www.facebook.com/pg/SolveMECFSInitiative
    https://twitter.com/PlzSolveCFS
    https://www.instagram.com/solve_cfs/

     
    WillowJ, Comet, ladycatlover and 16 others like this.
  2. belbyr

    belbyr Established Member

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    For the first time in a long time, I am pleased with everything the NIH is doing. It finally feels good to have them on our side.
     
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  3. Hip

    Hip Senior Member (Voting Rights)

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    ladycatlover, alktipping and MEMarge like this.
  4. Trish

    Trish Moderator Staff Member

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  5. Cheshire

    Cheshire Moderator Staff Member

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  6. ladycatlover

    ladycatlover Moderator Staff Member

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    Gosh, reading that patient story really shows up how deplorable attitudes to ME are in UK! I can't imagine the usual suspects being so kind, helpful and caring!
     
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  7. duncan

    duncan Senior Member (Voting Rights)

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    For some reason it strikes me as odd that patients in for a strict study protocol, struggling to attract participants, would be forced to participate in a hitherto "new" Clinic-wide exercise assessment - particularly patients in which exercise intolerance play a role...

    I would think that there would be preapproved exemptions - not just ME/CFS, there are several other neuro-muscular diseases, or cardio patients, this potentially could cause problems - but given the defining characteristic of PEM, especially ME/CFS volunteers.
     
    Last edited: Jul 16, 2019 at 11:45 AM
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    For people who haven’t read the article, there is now an exemption for the ME/CFS study.
     

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