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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. Andy

    Andy Committee Member & Outreach

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    Just spotted this on ME Research UK's Facebook page.

    [The current committee member list can be found on this page, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents. Previously I linked directly to it but NICE keep changing the file name, this way, hopefully, the latest version can be easily found.]

    Chair: Peter Barry, Consultant Paediatric Intensivist, University Hospitals of Leicester

    Vice Chair: Ilora Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, Cardiff

    Core members / Members
    Secondary care paediatrician: Theo Anbu, Consultant general paediatrician and lead for paediatric CFS/ME, Alder Hey Children’s NHS Foundation Trust, Liverpool

    Physician with an interest in ME/CFS: Mike Beadsworth

    Physiotherapist: Joanne Bond-Kendall

    Social worker: Tony Crouch, Social work advisor

    Psychologist: Jo Daniels

    GP: Luis Nacul

    Occupational therapist: Susan Watson, Senior occupational therapist, Leeds and West Yorkshire CFS/ME Service

    Lay member: Saran Bonser
    Lay member: Sally Burch
    Lay member: Nicola Kidby
    Lay member: Adam Lowe
    Lay member: Dorinda Jack

    Still to be filled;
    Community paediatrician
    Dietician
    Epidemiologist
    Nurse with specialist interest in ME/CFS
    Community children’s nurse

    ETA 25/10/18
    GP: Chris Burton (Professor of Primary Medical Care, University of Sheffield)
    Physician with an interest in ME/CFS: Gabrielle Murphy (Clinical Lead, Fatigue Service, Royal Free London NHS Foundation Trust)
    Community paediatrician: Alan Stanton (Consultant Community Paediatrician, University Hospitals Birmingham)
    have been added to the list of appointments. although no announcement would seem to have been made.
    Discussion of these new appointments can be found, on this same thread, here, https://s4me.info/threads/nice-guid...as-now-been-published.6197/page-6#post-115551

    ETA 08/11/18
    Changed from linking direct to the file listing the committee members to linking to the webpage that should show the latest version, this should be a more reliable way of finding the latest version.
     
    Last edited: Nov 8, 2018
  2. Cheshire

    Cheshire Moderator Staff Member

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    Nellie, Woolie, Robert 1973 and 53 others like this.
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Thanks. Pleased to be included. Glad Nacul and Crouch are involved, and the chair and vice chair seemed very good at the scoping and outreach meetings.
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    I could almost begin to feel hopeful here :).
     
  5. Andy

    Andy Committee Member & Outreach

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    Initial information gathering on the professional members. I have tried to find anything that would seem to indicate a BPS, or otherwise, approach.

    http://www.eastmidlandscongenitalhe...r-fantastic-teams/intensive-care/peter-barry/

    Also known as Baroness Finlay of Llandaff, https://www.parliament.uk/biographies/lords/baroness-finlay-of-llandaff/3609

    Unable to find anything worthwhile yet. May also be known as Anbarasu Anbu perhaps?

    https://www.researchgate.net/profile/Mike_Beadsworth
    An author on this study, https://www.meassociation.org.uk/20...nd-the-medical-research-council-2-april-2015/
    Author on conference paper "The role of IP-10 in Chronic Fatigue Syndrome.", https://www.fasebj.org/doi/abs/10.1096/fasebj.31.1_supplement.lb789

    Co-author on this paper along with Crawley, https://europepmc.org/articles/pmc5947766

    Represents 25% Group and TYMES Trust at Forward ME meetings - think we can trust him :)

    Based at Bath. https://www.researchgate.net/profile/Jo_Daniels2
    Author of poster, "Anxiety and depression in Chronic Fatigue Syndrome: prevalence and effect on treatment. A systematic review, meta-analysis and meta-regression" - I've been unable to find it online anywhere.
    Author of presentation, "The prevalence and treatment of health anxiety in Chronic Fatigue Syndrome (CFS)", can be read here, https://www.researchgate.net/public...ealth_anxiety_in_Chronic_Fatigue_Syndrome_CFS
    Author of article "Anxiety and depression in CFS/ME: the incidence of health anxiety in chronic fatigue syndrome", abstract can be read here, https://www.researchgate.net/public...of_health_anxiety_in_chronic_fatigue_syndrome

    Think we can assume we are happy with this appointment.

    Can't find anything initially.
     
  6. Sasha

    Sasha Senior Member (Voting Rights)

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  7. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    So we have a baroness as well as a countess now. On the HoL website it says the baroness has an interest in medical ethics.

    Jo Daniels was on the panel with Sonya C at the Unrest event in Bath JD floundered and started off talking about CFS and by the end had started saying ME/CFS.
     
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    This thread mentions the Leeds clinic: https://www.s4me.info/threads/not-a...psychological-medicine-nicpm.1780/#post-59154
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have not received a no. But don't ask further.
     
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    With a couple of exceptions, the professional members look pretty bad to me. I think we're in for a gruelling fight.

    Joanne Bond-Kendall

    https://apcp.csp.org.uk/content/joanne-bond-kendall

    https://www.csp.org.uk/frontline/article/childrens-pain-we-can-make-it-better
     
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  11. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Beadsworth is an old colleague of PACE's and AfME's Alastair Miller.
     
  12. Andy

    Andy Committee Member & Outreach

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  13. Sasha

    Sasha Senior Member (Voting Rights)

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    This isn't sounding promising. Who do we know to be good? Nacul, obviously...
     
  14. Andy H

    Andy H Established Member

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    Horrifying!

    Tony, Luis, Sally & Adam should all resign under protest that the NICE process is very evidently not fit for purpose.

    No sign of any medical practitioner who understands severe ME such as Drs Speight or Weir or any legal oversight for patients such as from Valerie.
    A kick in the guts from NICE.
     
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  15. John Mac

    John Mac Senior Member (Voting Rights)

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    Beadsworth is the doctor who first diagnosed me with CFS.
    Told me that they don't use the label ME because there is no evidence to support it.
    Also told me "don't be afraid of exercise"

    I'm sure he's hardcore BPS.
     
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  16. chrisb

    chrisb Senior Member (Voting Rights)

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    "Regulatory capture" often arises from relative apathy on the part of one side to the argument. That could not be the excuse here.
     
  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    Having so many BPS committee members also makes me deeply worried about the chair and vice-chair, assuming they were involved with the selection process.
     
    Last edited: Oct 16, 2018
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  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think the physio could be far worse....

    She was at our table for the scoping mtg. She is obviously v pro Crawley and is the one who said that the Magenta results were looking good!

    However, she has only been under the Crawley dept since 2015. EC can be very persuasive if you don't know much about ME, plus the lure of publishing could be attractive...

    I have some degree of hope that she might be open to reason, when she hears more about PACE gate etc.

    At least we don't have a Liaison Psychiatrist in the team.
     
  19. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I think it is to be expected that the BPS cult won’t go down without trying to fight for the status quo. the question will be how hard core these individuals are and how much they persist in digging their heels in. I’m relieved there are some people on the committee who will stand up for patients and common sense and I hope that any members who do not have a position will be persuaded that the evidence shows that the status quo is not an acceptable outcome from this process.
     
  20. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    The issue there is that being open to reason isn’t going to be a good short term career move.....
     

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