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  1. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    The following response has been received from Cochrane: Dear Trish Davis and the Committee of Science for ME international forum, Thank you for...
    Post by: Science For ME, Apr 9, 2024 in forum: Open Letters and Replies
  2. Science For ME
    Post

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

    We have had a reply from the MEA to the letters from the S4ME committee Open letters to the UK ME Association trustees about a research project...
    Post by: Science For ME, Apr 4, 2024 in forum: ME/CFS research news
  3. Science For ME
    Post

    Open letters to the UK ME Association trustees about a research project developing PROMs, led by Sarah Tyson

    Letter received from Neil Riley of the MEA today: "Dear Trish and Maree. Thank you for your email of the 2nd April 2024. I note your formal...
    Post by: Science For ME, Apr 4, 2024 in forum: Open Letters and Replies
  4. Science For ME
    Post

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

    The forum committee have sent two letters to the trustees of the MEA about this project. They are posted here: Open letters to the UK ME...
    Post by: Science For ME, Apr 2, 2024 in forum: ME/CFS research news
  5. Science For ME
    Post

    Open letters to the UK ME Association trustees about a research project developing PROMs, led by Sarah Tyson

    Letter 2 To the Chair and Trustees of the ME Association Copy to Professor Sarah Tyson Subject: Concerns about an MEA funded research project....
    Post by: Science For ME, Apr 2, 2024 in forum: Open Letters and Replies
  6. Science For ME
    Post

    Open letters to the UK ME Association trustees about a research project developing PROMs, led by Sarah Tyson

    Letter 1 To the Chair and Trustees of the ME Association Copy to Professor Sarah Tyson Subject: Formal complaint about the leader of an MEA...
    Post by: Science For ME, Apr 2, 2024 in forum: Open Letters and Replies
  7. Science For ME
    Thread

    Open letters to the UK ME Association trustees about a research project developing PROMs, led by Sarah Tyson

    In 2023 the UK ME Association announced it was funding a project, currently ongoing, which is developing Patient Reported Outcome Measures...
    Thread by: Science For ME, Apr 2, 2024, 4 replies, in forum: Open Letters and Replies
  8. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    PETITION UPDATE 21 March 2024 21 Mar 2024 Petition presented to Cochrane with a renewed call for withdrawal on the basis of harms On 17th March...
    Post by: Science For ME, Mar 21, 2024 in forum: Open Letters and Replies
  9. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    On 17th March 2024 the Science for ME Committee sent the following: To Jordi Pardo Pardo - Interim Chair of the Cochrane Governing Board Karla...
    Post by: Science For ME, Mar 18, 2024 in forum: Open Letters and Replies
  10. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    PETITION UPDATE 15 February update We are still waiting Six years ago this week, the late Robert Courtney (Bob) sent a letter of complaint about...
    Post by: Science For ME, Feb 15, 2024 in forum: Open Letters and Replies
  11. Science For ME
    Post

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    The committee received the following email from Cochrane on Tuesday 19th December, posted on the open letter thread, and also here for comments:...
    Post by: Science For ME, Dec 21, 2023 in forum: Petitions
  12. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    The committee received the following email from Cochrane on Tuesday 19th December. We have also posted it on the Petition thread so members can...
    Post by: Science For ME, Dec 21, 2023 in forum: Open Letters and Replies
  13. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    PETITION UPDATE December update DEC 18, 2023 The day after our last petition update, the S4ME committee sent a letter to the Head of Governance,...
    Post by: Science For ME, Dec 18, 2023 in forum: Open Letters and Replies
  14. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    On 20 November the Science for ME committee sent the following reply to Ms Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive...
    Post by: Science For ME, Nov 20, 2023 in forum: Open Letters and Replies
  15. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    PETITION UPDATE Cochrane refuses to follow its own complaints procedure NOV 19, 2023 — As we have reported, the Science for ME committee...
    Post by: Science For ME, Nov 19, 2023 in forum: Open Letters and Replies
  16. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    On 17 November 2023, we received the following email from Ms Johnson-Brown, refusing to consider our letter of complaint: _____________ Dear...
    Post by: Science For ME, Nov 16, 2023 in forum: Open Letters and Replies
  17. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    As Ms Johnson-Brown had clearly confused the formal complaint with the open letter, the forum committee sent the following email in reply, on 17...
    Post by: Science For ME, Nov 16, 2023 in forum: Open Letters and Replies
  18. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    On 13th November, the forum received the following letter from Cochrane regarding our letter of complaint: ___________ Dear [member of the forum...
    Post by: Science For ME, Nov 16, 2023 in forum: Open Letters and Replies
  19. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    PETITION UPDATE News from Cochrane, or rather from the Independent Advisory Group NOV 12, 2023 — Silence has been broken after a hiatus of...
    Post by: Science For ME, Nov 12, 2023 in forum: Open Letters and Replies
  20. Science For ME
    Post

    S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

    PETITION UPDATE The call from patient organisations grows stronger - Cochrane continues to show no sign of listening NOV 8, 2023 Five more...
    Post by: Science For ME, Nov 8, 2023 in forum: Open Letters and Replies
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