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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 Association trustees about a research project developing PROMs, led by Sarah Tyson In order not to split discussion over too many threads, that thread has been...

Letter 2 To the Chair and Trustees of the ME Association Copy to Professor Sarah Tyson Subject: Concerns about an MEA funded research project. Dear Neil Riley and trustees, In response to concerns raised by many members of the Science for ME forum about the MEA funded project developing a...

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 funded research project. Dear Neil Riley and trustees, We wish to lodge a formal complaint about Professor Sarah Tyson's behaviour towards members of...

In 2023 the UK ME Association announced it was funding a project, currently ongoing, which is developing Patient Reported Outcome Measures (PROMs), announced here: ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services. The project is led by...

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 2024, the Science for ME committee wrote to Jordi Pardo Pardo - Interim Chair of the Cochrane Governing Board Karla Soares-Weisser, Cochrane Editor...

On 17th March 2024 the Science for ME Committee sent the following: To Jordi Pardo Pardo - Interim Chair of the Cochrane Governing Board Karla Soares-Weisser, Cochrane Editor in Chief Vanessa Jordan, Chair - Cochrane's Conflict of Interest Committee Subject: Exercise therapy for ME/CFS Dear...

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 the 2017 version of the Larun et al Exercise Therapy for CFS Review to the then Cochrane Editor, David Tovey. Tovey acknowledged the validity of the...

The committee received the following email from Cochrane on Tuesday 19th December, posted on the open letter thread, and also here for comments: ______________ Dear Trish Davis and the Committee of Science for ME international forum, Thank you for your correspondence, which has been referred...

The committee received the following email from Cochrane on Tuesday 19th December. We have also posted it on the Petition thread so members can comment. ___________ Dear Trish Davis and the Committee of Science for ME international forum, Thank you for your correspondence, which has been...

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, Cochrane Central Executive Team. You can find the letter here. In it, we queried Cochrane's earlier letter where they said first, that they were...

On 20 November the Science for ME committee sent the following reply to Ms Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team: _________________ Dear Ms Johnson-Brown We are puzzled by your letter beginning: "We are committed to responding to complaints appropriately."...

PETITION UPDATE Cochrane refuses to follow its own complaints procedure NOV 19, 2023 — As we have reported, the Science for ME committee submitted a series of complaints under Cochrane's official complaints procedure on 31st October about the Editor-in-Chief Karla Soares-Weiser's mishandling...

On 17 November 2023, we received the following email from Ms Johnson-Brown, refusing to consider our letter of complaint: _____________ Dear Trish We are committed to responding to complaints appropriately. Cochrane isn’t a government department or a public body, we are a relatively small...

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 November 2023, asking Cochrane to follow the complaint procedures it has set out on its website: ______________ Lucy Johnson-Brown Head of Governance...

On 13th November, the forum received the following letter from Cochrane regarding our letter of complaint: ___________ Dear [member of the forum committee] I understand that my colleagues have already reviewed this complaint and responded. In line with previous correspondence sent to you...

PETITION UPDATE News from Cochrane, or rather from the Independent Advisory Group NOV 12, 2023 — Silence has been broken after a hiatus of more than two years in the promised monthly updates from Hilda Bastian, leader of the Independent Advisory Group (IAG) for the process to develop a...

PETITION UPDATE The call from patient organisations grows stronger - Cochrane continues to show no sign of listening NOV 8, 2023 Five more organisations add their support to the campaign Thank you very much to the following five organisations for supporting the campaign, bringing the number...

PETITION UPDATE Complaints to Cochrane Christchurch, New Zealand OCT 31, 2023 — Cochrane has a system whereby complaints, defined as 'an expression of unhappiness about a failure of process or an important misjudgement' are accepted and are responded to. Today, the Science for ME committee...

Today the Science for ME Committee sent a letter of complaint to the Cochrane Complaint email address covering five specific complaints. It has been posted here: S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review We have also posted an update on the...