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

PETITION UPDATE

Cochrane abandons the replacement review
19 Dec 2024


Cochrane cancels the review update

A year after Hilda Bastian's last update from the Independent Advisory Group, and months after she last responded to any posts on her talkpage, Cochrane has made the following announcement:

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Cochrane's Update on ‘Exercise therapy for chronic fatigue syndrome’

Monday, December 16, 2024

"In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.

Any feedback on this decision should follow Cochrane’s established complaints process. Any correspondence sent directly to individuals at Cochrane will not be considered."

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Sadly, we are not at all surprised by Cochrane's reneging on their promise of a new updated review while they leave the 2019 review in place. They are clearly influenced by some of their leaders who are well known to support the psychobehavioural view of ME/CFS. No prospect of a new Cochrane review makes removal of the harmful 2019 review even more vital.

Just days before this announcement, the committee and members of Science for ME wrote to all the members of the Independent Advisory Group asking them to urge Cochrane to withdraw the 2019 review - see the letter here.

The IAG and the members of the review writing group have had their goodwill and efforts badly misused by Cochrane. We hope they will now speak publicly, urging Cochrane to act with scientific integrity and humanity by withdrawing the 2019 review.

Thanks
Thank you to all of you who have supported the campaign - we have seen a surge in petition numbers and comments lately. Please keep sharing the link. If you have contact with any funders of Cochrane, please inform them of the failure of Cochrane's quality control mechanisms.

Thanks to #ThereForME, an advocacy group calling for better care from the United Kingdom public health system for people with ME/CFS and Long Covid.
And thanks to the United Kingdom Members of Parliament in the All Party Parliamentary Group on ME. The addition of these two organisation brings the total number of supporting organisations to 79, from 25 countries.

We hope that Cochrane's abandonment of a replacement review process will allow those patient charities that were previously constrained by their involvement in the IAG to now add their names in support of the call for the 2019 review to be withdrawn.