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Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by hixxy, Feb 24, 2018.

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  1. MEMarge

    MEMarge Senior Member (Voting Rights)

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    this is a gargantuan waste of research money...[/QUOTE]

    Good for further motivation to support DT.
     
    MEMarge, Apr 9, 2018
    #21
    Luther Blissett, Webdog, Amw66 and 2 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    as AYME have been absorbed into AfME is FITNET now under their 'supervision' like PACE was?
     
    Sly Saint, May 4, 2018
    #22
    Inara, Hutan, adambeyoncelowe and 2 others like this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    I don't know. It had been stated AYME were assisting with FITNET-NHS, so if that has changed, should participants and ethics committees be informed of the change?

    I just looked at the FITNET-NHS FAQ, and see that they have added a link to Crawley's TEDx talk, even though the video itself has now been unlisted on youtube.
     
    Esther12, May 4, 2018
    #23
    Inara, Hutan, Sly Saint and 1 other person like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @dave30th
    do you know what the situation is/should be. IE presumably ethics approval was given partly because she had the backing of a patient organisation (AYME)(?)
     
    Sly Saint, May 4, 2018
    #24
    Inara, MEMarge and Trish like this.
  5. dave30th

    dave30th Senior Member (Voting Rights)

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    My impression is that in this domain of research, the ethics committees, at least in the Bristol neck of the woods, appear to give approval for whatever the researchers ask to do--no matter what the proper approach would ordinarily be.
     
    dave30th, May 4, 2018
    #25
    2kidswithME, MSEsperanza, alktipping and 12 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    Video been quoted on twitter by Dr Geraghty querying recovery rates.
    So so poor
     
    Amw66, Jun 10, 2018
    #26
    MEMarge likes this.
  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Jun 10, 2018
    #27
    Joh, Hutan, Missense and 6 others like this.
  8. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Jun 10, 2018
    #28
    Joh, Hutan, Missense and 6 others like this.
  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Jun 10, 2018
    #29
    2kidswithME, Joh, Hutan and 8 others like this.
  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    Sorry for duplication - i' m pretty crap at twitter ...
     
    Amw66, Jun 10, 2018
    #30
    Binkie4, MEMarge and Esther12 like this.
  11. Trish

    Trish Moderator Staff Member

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    Trish, Jun 10, 2018
    #31
    Hutan, Joh, Lisa108 and 7 others like this.
  12. Inara

    Inara Senior Member (Voting Rights)

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    I can't watch that video. It makes me too angry. Shame on them, especially Mrs Crawley!
     
    Inara, Jun 11, 2018
    #32
    Joh, Hutan, Lisa108 and 3 others like this.
  13. Joh

    Joh Senior Member (Voting Rights)

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    Joh, Jun 12, 2018
    #33
    Hutan and Inara like this.
  14. JohnTheJack

    JohnTheJack Moderator Staff Member

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    JohnTheJack, Jun 30, 2018
    #34
    MSEsperanza, Inara, Skycloud and 3 others like this.
  15. chrisb

    chrisb Senior Member (Voting Rights)

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    I noticed that on another page. This looks like an error of judgment. You would think they would wish to conceal evidence capable of causing serious reputational damage.

    The first talk could possibly be excused as a case of "misspeaking", but not the second one.
     
    chrisb, Jun 30, 2018
    #35
    MSEsperanza, Inara, Esther12 and 1 other person like this.
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That page seems to be blank for me.
     
    Jonathan Edwards, Jun 30, 2018
    #36
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Jul 1, 2018
    #37
  18. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Odd. Loads OK still for me.
     

    Attached Files:

    JohnTheJack, Jul 1, 2018
    #38
    Esther12 likes this.
  19. TiredSam

    TiredSam Committee Member

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    And for me.
     
    TiredSam, Jul 1, 2018
    #39
  20. Andy

    Andy Committee Member

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    Andy, Sep 3, 2019
    #40
    MSEsperanza likes this.
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