1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Nov 14, 2019.

Tags:
Page 2 of 2
  1. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Given this is intended for severe pwME, that is an appalling state of affairs.
     
    Barry, Nov 16, 2019
    #21
    MEMarge, alktipping and Wonko like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    52,225
    Location:
    UK
    I suspect it was set up in a hurry and not properly tested before going live. I think Keith Geraghty has been given a very short time span to do the research and report to NICE.
     
    Trish, Nov 16, 2019
    #22
    Dolphin, alktipping, Barry and 1 other person like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,259
    Location:
    UK West Midlands
    Agreed but NICE must have experience of seeking input from seriously ill patient groups. There should be a service standard for their questionnaires. The IT issues are fairly basic requirements that should be capable of being delivered even on a rush job.
     
    NelliePledge, Nov 16, 2019
    #23
    MEMarge, Barry, alktipping and 1 other person like this.
  4. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
    262
    Location:
    England
    https://twitter.com/user/status/1196093633587486722


    Tweet from Keith at 3:51pm today (Sunday 17th 2019) saying:
    Glad to hear they've had a big response, really hope they've had enough input from those with severe ME, and that those who want to have had enough time to respond.
     
    Gecko, Nov 17, 2019
    #24
    MEMarge, rvallee, EzzieD and 9 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,582
    Location:
    UK
    Sly Saint, Nov 20, 2019
    #25
    EzzieD, rvallee, ukxmrv and 4 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,318
    Seems like some similar issues to the paediatric survey.
    Perhaps in future those whom the survey is aimed at could advise re a range of formats for information capture.
    Sadly a one size fits all doesn't t work
     
    Amw66, Nov 21, 2019
    #26
    Andy and Trish like this.
Page 2 of 2

Share This Page