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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.

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  1. Barry

    Barry Senior Member (Voting Rights)

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    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

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    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

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    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)

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    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)

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    Sly Saint, Nov 20, 2019
    #25
    EzzieD, rvallee, ukxmrv and 4 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    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.
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