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  1. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    I am very concerned at the information lacking within this FOI; it makes no attempt to acknowledge the new Health and Care Act April 2022 or the...
    Post by: Suffolkres, May 30, 2023 in forum: UK clinics and doctors
  2. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    To me, 'Sonya let me know that she has responded to you on Twitter about this, and you can now find a link to the report on our website here:...
    Post by: Suffolkres, May 30, 2023 in forum: UK clinics and doctors
  3. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    Yes. The exchange between NHS E and Gillian Leng/ Paul Chrisp..?
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  4. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    I thought during NICE summer 2021 debacle an FOI was issued.. member 'Initial conditions' maybe, rather than a formal one from S4ME? I will check...
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  5. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    SW on Board NHS England.....
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  6. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    Looks like some jiggery pokery is going on.?
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  7. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    The situation outlined has been known to us in Suffolk, documented and predicted during NICE/GRIP/DHSC David Javid 'consultations' conversations...
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  8. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    The problem is what Professor Mark Baker formerly NICE called 'the ME Mafia'! NHS England is undoubtedly the main breeding ground for the above.....
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  9. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    Report now written up. I accessed it via Adam, Twitter 'Broken Battery'...
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  10. Suffolkres
    Post

    Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report - Action for ME, May 2023

    I have been asking about this for weeks..... kept very close to chest after shared with APPG...
    Post by: Suffolkres, May 29, 2023 in forum: UK clinics and doctors
  11. Suffolkres
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Bravo Jonathan... you echo my thoughts entirely. So what is happening, where is the DHSC NICE GRIP development going? Slow boat to China comes...
    Post by: Suffolkres, May 14, 2023 in forum: ME/CFS research news
  12. Suffolkres
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    As ever Trish, a masterful response. Very helpful. Thanks. B
    Post by: Suffolkres, May 11, 2023 in forum: ME/CFS research news
  13. Suffolkres
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Due to limitation or resources, both financial and experts, available to run a comprehensive MDT, it has been suggested in the draft spec that...
    Post by: Suffolkres, May 11, 2023 in forum: ME/CFS research news
  14. Suffolkres
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Both posts typo edited. Replying on a mobile phone is difficult!
    Post by: Suffolkres, May 10, 2023 in forum: ME/CFS research news
  15. Suffolkres
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I apologise if the concerns expressed (not with yourself but with Bristol Service etc and PG/ BACME historically.. ) gave rise to any upset to...
    Post by: Suffolkres, May 10, 2023 in forum: ME/CFS research news
  16. Suffolkres
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I apologise if my concerns expressed (Not with yourself but with Bristol Service etc and BACME historically.. ) gave rise to any suggestion to...
    Post by: Suffolkres, May 10, 2023 in forum: ME/CFS research news
  17. Suffolkres
    Post

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I am mortified at seeing this funding... He is a physio specialising in psychological approaches to pain management. Covid as well. Never mind...
    Post by: Suffolkres, May 8, 2023 in forum: ME/CFS research news
  18. Suffolkres
    Post

    Crowdfunding: Trial By Error: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Spring 2023

    David reaching his target Crowd funding has made my day!
    Post by: Suffolkres, Apr 30, 2023 in forum: Fundraising
  19. Suffolkres
    Post

    Dr Jonathan Kerr

    Moved post Am involved in exploring new ME Service opportunities. Am trying to track down Dr Jonathan Kerr ATM? I last had email contact March...
    Post by: Suffolkres, Apr 19, 2023 in forum: UK clinics and doctors
  20. Suffolkres
    Thread

    UK - News from The Grace Charity for ME.

    https://www.thegracecharityforme.org/documents/ Documents Since 1st April 1995, the World Health Organisation’s listing of M.E. (Myalgic...
    Thread by: Suffolkres, Apr 11, 2023, 0 replies, in forum: News from organisations
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