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

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Thanks to Grupa Wsparcia ME/CFS from Poland for being the latest signatory and to @Mike Harley for help.

 

Takk til ME Foreningen Østfold for supporting the petition!

 

Many thanks to two ME/CFS research foundations who have added their names to the list of organisations supporting the open letter:

• ME/CFS Research Foundation gGMBH in Germany
• WE&ME Foundation in Austria

This brings the number of supporting organisations to 69, from 24 countries.

 

We've had a burst of signatures from Switzerland - thanks so much to whoever is responsible for promoting the petition there for that.

 

The Schweizerische Gesellschaft fur ME said they would cover the petition in their December newsletter

 

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 committed to responding to complaints appropriately, and then, made it clear that they would not be following their published complaints procedure for our complaints.

We noted the substantial reputational risk that Cochrane runs in continuing to provide a platform for a review that it has acknowledged is flawed, in not acting in a timely manner in the production of a promised replacement review and in continuing to ignore the opinions of so many consumer organisations that the advice the review provides causes harm.

We noted the double standards, where Cochrane spent over a year investigating a complaint from, presumably, a relatively small group of people who don't want the 2019 Larun review to be replaced. This extensive investigation is reported by Hilda Bastian to have significantly delayed the replacement review and, it appears, has resulted in concessions including more representation of the pro-GET lobby on the "Independent Advisory Group" of the new review.

We asked Cochrane to confirm that the trustees had signed off on the departure from their published complaints procedure for our complaints. We noted that this would surely be required, given that the complaints were against the actions of senior management, and also given the reputational risks. It would be very odd if it was thought acceptable for a complaint against a Cochrane officer to be evaluated only by that officer.

We have not yet received a reply.

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The S4ME committee is considering what action to take next.

We intend sometime soon to formally present the petition to the Cochrane trustees, highlighting in doing so the many comments by petitioners, and the names of the organisations supporting this campaign. If we take our complaint to COPE or the UK charity commission, that may need to be done with some level of confidentiality in order to comply with their rules.

Thank you again to all the individuals who have signed the petition, added your own testimony to the harm exercise therapy has caused to you or your loved ones, and spread the word about the petition to others with ME/CFS and Long COVID and their supporters. Please keep doing so.

Thank you also to the many organisations who have signed in support. Do please get in touch with the S4ME team on moderators@s4me.info if your organisation wants to sign or has other ideas of ways to help.

Thank you to the following organisations for adding their names in support of the open letter here bringing the total number of organisations to 69, and, with organisations from Poland and Austria, the number of countries represented to 24.

Grupa Wsparcia ME/CFS, Poland
Norwegian ME Association, Østfold region
ME/CFS Research Foundation gGmbH, Germany
WE&ME Foundation, Austria

While Cochrane still hosts a review that recommends exercise as therapy for ME/CFS, the harm continues, so the fight for health and justice must continue too.

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We hope that, as this year draws to an end, you have loved ones close and that the new year brings us all peace, joy, good science and compassion.

Best wishes, the Science for ME team

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