UK NICE - Projects to support the development of the NICE guideline on ME/CFS: diagnosis and management

Discussion in 'General ME/CFS news' started by Andy, Apr 8, 2019.

  1. Andy

    Andy Committee Member

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    https://www.rcplondon.ac.uk/ngc-guideline-development
     
  2. John Mac

    John Mac Senior Member (Voting Rights)

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    Please note: You must return your proposal by 5pm on 24th April.

    16 days notice!
    Isn't that a bit of a short notice to produce a project?
     
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  3. Wonko

    Wonko Senior Member (Voting Rights)

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    I'm confused.

    I thought they already appointed a dubious committee to do this?
     
  4. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I have a horrible feeling about who might tender for the first project.
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It seems very late to be putting out to tender for proposals to employ people to do research projects. Maybe this has come out of the committee meetings so far?
    ? @adambeyoncelowe
     
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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    unless they know of researchers who just happen to have one they 'prepared earlier'..(?):cautious:
     
  7. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    If this announcement were made in the US the ME/CFS researchers would be able to submit their proposals in no time. It actually concerns me if there are no researchers in the UK able to do this at the drop of a hat.
     
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    So they’re looking for something equivalent to focus groups to get views from those 2 groups of patients. Obviously approach for people with severe ME will need to be adapted to be appropriate. Would surely expect a key aspect to be the researchers to be involving relevant patient groups ie 25%group and Tymes to design suitable approaches.
     
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  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Biobank staff should tender for this! Eliana?
     
    Last edited by a moderator: Apr 8, 2019
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  10. Barry

    Barry Senior Member (Voting Rights)

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    Hopefully not already a done deal, and just a box-ticking exercise? Surely they could not get away with doing that?
     
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  11. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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    They've gotten away with everything else.
     
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  12. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    I’ve emailed the link to Caroline Kingdon for their information.
     
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  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I've no idea what this is. I'll try and found out. It may just be focus groups for those patients (children and the severely affected).
     
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  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    I hope my gut feeling is wrong re children's one: given the research to date i have very real concerns.
     
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  15. Adrian

    Adrian Administrator Staff Member

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    Any thoughts on finding some friendly academics that we could work with through the forum here to link with and get patient views?
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    In that case methinks the right hand hath no idea what yer actual left hand doeth?

    I know I should be a bit more respectful (slaps left wrist).
     
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  17. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    When we stakeholders were at the 2nd meeting with NICE, we were asked at our table for ideas on how to include groups such as the severely affected in the guideline development process

    It sounded then as if they wanted a system to be able to (probably remotely and they mentioned Skpe and video conferencing) get input from a focus group into the guideline development.

    It wasn't clear then what actual power this group would have to influence the guideline content or at what point of the development they would be asked to comment on
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I actually think there are some serious ethical issues here with researchers accessing patient groups. The issues would be severe if the researchers were involved in service provision themselves. If they were not there would be other issues. Any project would need ethical approval which could take 3 months. It is not clear what the project is supposed to find out. It seems crazy to me to put this out now without a clearer explanation.
     
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  19. Andy

    Andy Committee Member

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    Nah, it'll be fine, they can just roll the ethical approval over from some sort of service provision can't they??? ;)
     
  20. Barry

    Barry Senior Member (Voting Rights)

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    Yep. No one will notice.
     
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