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 complaint and did not publish the next iteration of the review. The current editor, Karla Soares-Weiser, also acknowledged the revised review was flawed, but published it anyway in October 2019, setting out a plan for its replacement within two years. We are still waiting for that flawed 2019 review to be removed. 

So, six years on, wonderful people with ME/CFS like Bob are still dying much too early, harmed in many ways by people who think the disease can be cured by exercise.

An update from the Cochrane IAG
There was an update from Cochrane's Independent Advisory Group for the planned new review on 20 December 2023 - available here 

Under the heading of Preliminary Timetable for the New Year , it is noted that a new timetable for progress on the new exercise therapy review (which is already years overdue) might be provided in the next report. There is also a promise of future consultation on a forthcoming paper summarising past critiques of the old review.

Notably, nothing at all was said in this update about the consultation on the draft protocol for the new review that was promised in the previous update. A protocol plays a large part in defining the outcome of a review. It is crucial to progress, and yet a consultation process on it seems to be so far away now that it can no longer even be promised.

Also notably, no timeline was given for the previously promised revision of the editorial note on the 2019 review, nor any indication of what it might say. Like so many things with Cochrane, it is promised to happen at some unspecified point in the future.

Under the heading of Complaints and Communication, we are told that Cochrane, an organisation which has been operating for years with a self-appointed mandate to provide authoritative medical advice to the world, has now agreed on 'pathways for referring complaints' which it is hoped will improve responsiveness in the future. It seems that it has been operating without an adequate quality control system.

There has been some activity around adding yet more members to the Independent Advisory Group though. One remaining position is to be filled by someone who addresses "concerns expressed about a perception of bias in the makeup of the IAG". Given that we are not aware of concern being expressed by patient representatives, we assume the concern was expressed by a proponent of exercise therapy for ME/CFS. Given it is noted that the desire is to have a medical professional who works with patients with ME/CFS, it seems likely the appointee will make their living from recommending exercise therapy to people with ME/CFS. We would love to be proved wrong.

This adding of IAG members seems to be more re-arranging of the deckchairs on a ship being steered towards its preplanned destination. It is not at all clear what authority the IAG has in the production of the new review. The issue of the IAG composition is a distraction from the fact that the 2019 review continues to stand, continues to be endorsed by Cochrane and continues to cause harm. It is not clear in what year a replacement review will eventually be produced, if ever.

Letter from Cochrane 
On 19th December the S4ME committee received a response to our letter of a month earlier in which we, among other things, queried their complaint management approach. In this letter, Jordi Pardo Pardo, Interim Chair Cochrane Governing Board, said that some of the points we have raised had been considered already after complaints in 2020. He concluded his letter with "However, the other matters you have raised are under review, and we will get back to you in due course."

Two months on, we have yet to receive any further correspondence from Cochrane and it is not clear which complaints are being considered and which ones have been dismissed. For more information about this, see the Science for ME thread.

More than 10,000 signatures!
Many thanks to everyone who has shared the petition link, helping the total number of signatures from all over the world to now be well over 10,000. Please continue to share the link, and continue to inform people in the ME/CFS and Long Covid communities about this issue.

For a list of the 69 organisations who are supporting the campaign for the removal of the flawed review, see here. If an organisation that you are associated with isn't listed, please encourage them to learn about the issue and add their support.