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NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Discussion in 'General ME/CFS News' started by Andy, Oct 16, 2018.

  1. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    See #726. Obviously not claiming credit but perhaps
    they do read the letters and absorb the contents after all.

    Mr B will be pleased. I thank him for all the letters he writes.


    ETA: the announcement says “ meetings are beginning”. Have the final ?2 been appointed. @Keela Too @adambeyoncelowe
     
    Last edited: Feb 6, 2019
  2. Trish

    Trish Moderator Staff Member

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    Is there an up to date list of all the members of the committee? I could only find the one from November on the NICE website.
     
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  3. Andy

    Andy Committee Member & Outreach

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    We've seen before that there is a time lag, somewhat understandably, for those documents being updated. To my knowledge there is no more up to date version than that one.
     
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  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Good
     
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  5. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Last edited: Feb 6, 2019
  6. Andy

    Andy Committee Member & Outreach

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    As I'm feeling lazy I'll quote myself :)
    Follow the link and then look for the document called Committee Member List.
     
  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    FYI the now 2 members of the NICE Guideline Committee and review for ME who were regarded by Waveney CCG as having a "conflict of interest” in the delivery of in their feasibility report for Suffolk and Norfolk ME and CFS Services, and who had offered to steer the ME Service ship into calm and safe waters…… After responding to a public NHS advertisement issued for a lead clinician to do so in 2015.....
     
  8. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Done that. There are 2 documents on Committee members but I can’t find a list of names attached to either. Am I missing something?
     
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  9. Andy

    Andy Committee Member & Outreach

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  10. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    MEMarge, ladycatlover and Andy like this.
  11. Daisymay

    Daisymay Senior Member (Voting Rights)

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  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    :banghead::wtf:
     
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  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    It includes three 'to be appointed' slots. Presumably they've been filled though, if meetings have started.
     
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  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I think the posts filled so far will be published after the first session (which was today).

    But they're still recruiting a paediatric nurse, so please tell people to apply.
     
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  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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  16. Andy

    Andy Committee Member & Outreach

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    I know no more than the rest of the forum but given it doesn't include Caroline then I can say that no, it's not the final list.
     
  17. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Retirees may still be fine. It would be good to fill this role.
     
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  18. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I did try to make contact with her, as she would be excellent, but she was abroad and colleagues (or ex colleagues) said on her return they would pass on my message.
    David Vickers Cambridge paediatrician (who was involved with the 2007 Guideline) may be in contact with her?
     
  19. saranbonser

    saranbonser Established Member

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    Hi everyone. I know there hasn't been any chat about who us mysterious lay members are in a while, but I thought I should respond to some of the things in this thread.

    Firstly, I totally get why people were suspicious of lay members who they hadn't heard of before. In my case, I was only diagnosed a year ago and it took me a long time to accept and publicly admit that I was ill.

    I can't really share my opinions at the moment, but I can say that I have been ill for 14 years (since I was 4). I have felt totally let down by the medical profession and I've had my fair share of gaslighting and neglect. The main reason I'm doing this is to try to make sure in the future, children with ME aren't treated the way I was.

    Just because I'm young and you haven't heard of me before, it doesn't mean I'm stupid or uneducated. Obviously I'm not perfect and I don't know everything about everything, but I do know what being a child with ME felt like, and that's the voice I'm there to try and ensure is heard.

    I hope this provides a little reassurance.
     
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  20. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Saran, good to see you here.

    As fellow lay member on the GDG, I am delighted to be working with you over the next months to ensure that patient perspectives are heard. I am confident that you will bring a strong voice for young people to the group. Xx
     
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