Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

This petition has been posted on behalf of the committee of the international Science for ME forum:

People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane Review.

Cochrane is an international organisation that publishes reviews of research evidence for treatments of diseases; it has a lot of influence over clinical guidelines used around the world. Four years ago, in October 2019, Cochrane published ‘Exercise therapy for CFS‘, supporting the use of exercise therapy for chronic fatigue syndrome (more correctly known as ME/CFS).

Cochrane’s editor-in-chief admitted the review was not fit for purpose on publication, but it continues to be hosted in the Cochrane Library and cited in scientific journals and clinical guidelines. This is despite government organisations such as the UK’s NICE (NG206: 1.11.14) and the USA’s CDC having found, following unbiased evaluations, that there is no evidence that exercise therapy is effective for ME/CFS. This is also despite virtually all ME/CFS patient organisations rejecting exercise therapy as a valid treatment of the disease and many people with ME/CFS reporting becoming much sicker after graded exercise therapy.

Also in October 2019, the Cochrane editor-in-chief promised to commission a new review with the process to be a pilot of a new approach, involving an independent advisory group and public consultation. The aim was to complete it in two years. In 2023, not even the first step, a review protocol, has been agreed.  There has been no public consultation and none of the promised monthly updates since August 2021.

The Covid-19 pandemic has created even more need for evidence-based assessments of proposed therapies for ME/CFS. Many of the millions of people who are developing Long Covid meet ME/CFS criteria and have the symptom of post-exertional malaise, contraindicating Graded Exercise Therapy.

The committee and members of the international Science for ME forum have written to Cochrane requesting:

1. The immediate withdrawal or retraction of the 2019 Cochrane review ‘Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions.

AND

2. An immediate restart of regular monthly updates on the new review process, with clearly stated timelines for completion of the review to publication within one year from now.
OR
Abandonment of the new review process.

The letter has been posted here:
S4ME: 2023 Open Letter to Cochrane – request for action on the ME/CFS Exercise Therapy Review

WAMES and the World ME Alliance have co-signed the letter.

Please sign this petition to call on Cochrane for action.