On the 8th October, we sent a letter to Catherine Spencer, Chief Executive of Cochrane. You can find a copy of the letter here.

In the letter, we noted the multiple letters sent in this campaign, as well as the years of effort from advocates. We noted that our arguments have been found to be accurate by agencies such as NICE and the CDC when they have examined the evidence base for exercise therapy for ME/CFS. We noted that the Editor of Cochrane, Dr Soares-Weiser, had acknowledged that the 2019 review required replacement at the time it was published.

We noted this petition with its many testimonies of harm. We noted the, at the time, 40 organisations from all around the world that were supporting the call for the immediate removal of the problematic review.

As of the 18th October, we have had no reply. Advocates have tried in multiple ways over multiple years to engage with Cochrane, and still that review remains in place, propping up clinical guidelines that are simply wrong.

The quality control systems in Cochrane appear to be broken. That is a major problem for an organisation claiming to offer gold-standard information on health care. Cochrane is ignoring the global community of patients and their organisations, it is ignoring credible agencies that also found that exercise therapy does not work. It is ignoring the obvious flaws of the 2019 review, and the obvious flaws of the trials that the review attempted to summarise. 

This is despite Cochrane announcing in 2022 that it has a 'bold new framework for consumer engagement and involvement'. Cochrane claims to have a commitment to the implementation of public involvement called "Putting People First". It aimed to have a mechanism to "ensure Cochrane's work in engagement and involvement is evidence based, and to monitor and evaluate the impact of its work". There is little evidence of these aims being anything more than platitudes when it comes to the 2019 Exercise Therapy for CFS Review.

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Since our last update, another seven organisations have added their names in support of the campaign. Many thanks to these organisations from Norway and Belgium.
ME Foreningen Vestland
ME Foreningen Buskerud
ME Foreningen Troms
ME Foreningen Vest Agder
ME Foreningen Aust Agder
ME Foreningen Vestfold
Millions Missing Belgique

You can find the list of the now 48 ME/CFS and Long Covid organisations supporting the campaign here. If you know of an organisation that might like to support the letter, please contact us or have the organisation contact us at moderators@s4me.info.