1. To read the 'News in Brief' post for w/c 9th Sept then click here.
    Dismiss Notice

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)

    Messages:
    879
    Likes Received:
    8,515
    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/

     
    Sanna, andypants, WillowJ and 18 others like this.
  2. belbyr

    belbyr Established Member

    Messages:
    4
    Likes Received:
    22
    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.
     
    Sanna, ladycatlover, obeat and 3 others like this.
  3. Hip

    Hip Senior Member (Voting Rights)

    Messages:
    559
    Likes Received:
    2,154
    ladycatlover, alktipping and MEMarge like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    15,581
    Likes Received:
    83,578
    Location:
    UK
    Sanna, Dakota15, ladycatlover and 2 others like this.
  5. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    2,074
    Likes Received:
    14,658
  6. ladycatlover

    ladycatlover Moderator Staff Member

    Messages:
    1,691
    Likes Received:
    9,654
    Location:
    Liverpool, UK
    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!
     
    Annamaria, Trish, Andy and 3 others like this.
  7. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    675
    Likes Received:
    2,654
    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
  8. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    1,619
    Likes Received:
    8,018
    For people who haven’t read the article, there is now an exemption for the ME/CFS study.
     
  9. Sanna

    Sanna Established Member

    Messages:
    8
    Likes Received:
    56
    This is exactly why I felt like I needed to tell patients about this experience. I know many doubt the NIH's true intentions, but the NIH is not one person or group, and with this group of people working on this current study, I came away feeling truly cared for and about. So, I wanted patients to know that these people feel like they're on our side regardless of previous history or other people within the NIH currently.
     
    Hutan, Cheshire, Binkie4 and 8 others like this.
  10. Sanna

    Sanna Established Member

    Messages:
    8
    Likes Received:
    56
    Yes, I only did the assessment once and mentioned my concerns once. It was taken care of as swiftly as possible, and it's really not that easy to get those kinds of higher level meetings that fast. I was honestly quite impressed with how it was handled.
     
    Hutan, rvallee, Binkie4 and 4 others like this.
  11. Sanna

    Sanna Established Member

    Messages:
    8
    Likes Received:
    56
    I just joined this forum and am the author of those two articles linked to above. I would be glad to answer any questions anyone may have.
     
    Hutan, rvallee, Binkie4 and 8 others like this.
  12. Trish

    Trish Moderator Staff Member

    Messages:
    15,581
    Likes Received:
    83,578
    Location:
    UK
    Hi @Sanna, Welcome to the forum. Thank you for being willing to answer questions. I hope you will enjoy exploring the rest of the forum too.
     
    Hutan, ahimsa, Sanna and 3 others like this.

Share This Page