By David Tuller
*This post has been corrected. In the first sentence, I originally wrote in error that the open letter was sent to Cochrane on September 4th, not on August 28th.
On August 28th, the Science for ME (S4ME) forum sent an open letter to Cochrane’s editor-in-chief, Karla Soares-Weiser, requesting the “immediate withdrawal or retraction” of “Exercise therapy for chronic fatigue syndrome,” a 2019 review. The review over-stated the evidence in favor of exercise therapies and has been widely and appropriately criticized for its seriously flawed methodology. In addition, the S4ME letter requested updates on the long-delayed effort to develop a new review—a process launched in the months before the coronavirus pandemic.
To pursue that process, Cochrane appointed two separate teams: one to write both a protocol for an updated review and the review itself and another to serve as an Independent Advisory Group that would oversee the endeavor. I have blogged about Cochrane multiple times, including this post last March on the exercise review situation and this update on S4ME’s letter. (Although I am a member of the forum, I was not involved in this new Cochrane initiative. But I fully agree that the review is a piece of crap and should be flushed down the toilet.)
As part of its two-pronged strategy to address the issue, S4ME also launched a petition on change.org, which now has close to 10,000 individual signatories. An impressive international roster of dozens of patient and advocacy organizations has also endorsed the petition; I have listed them at the end of this post.
After weeks of silence, the forum received a partial response from Cochrane in late September, as follows:
Dear members of the Science for ME Committee and Forum,
Thank you for your email and sharing the open letter and petition.
After an unplanned hiatus, the Independent Advisory Group resumed its work last month, including preparing to resume public reporting and general communication. A first report and project website update is planned for release in the next few weeks. Reports and updates will be notified to those who subscribed to the email list at firstname.lastname@example.org
We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.
Please subscribe to the above email for further reports and updates. Thank you.
King (sic) regards,
Office of the Editor in Chief
In a follow-up to Cochrane, S4ME noted that the organization’s letter left many questions unaddressed—especially regarding the request to withdraw the 2019 review. After a few more weeks, Cochrane sent a second response in mid-October. Here’s the text:
Thank you for your email.
The 2019 version of the review has undergone thorough editorial scrutiny and the matter is closed.
For any new concerns about this topic, the process is to pass them to the Independent Advisory Group to inform their work. Please could you confirm if you are happy for us to share this correspondence with them so they can take your requests into consideration?
The Independent Advisory Group is seeking to address questions beyond the scope of the 2019 review, and we hope to share a progress update from them in the coming weeks.
Cochrane does not have the resource to hire project managers for individual reviews. A former member of staff helped to set up the Independent Advisory Group, which is now self-managing.
Office of the Editor in Chief
Interestingly, Dr Soares-Weiser’s name was not included in either of these responses, although both came from her “office.” Presumably she composed it or at least concurred with the content. But the decision to not add her name suggests that she might be trying to distance herself from developments. That would be an understandable impulse, given the disastrous quality of the review in question and the mess surrounding its publication, which occurred after protracted negotiations over the content between Cochrane and representatives of the authorial team.
This process of developing the new review has dragged on now for years, with no end in sight—even as the inadequate review remains active. Although Cochrane promised to issue regular updates on the process, it has so far failed to fulfill this obligation.
It is understandable that the coronavirus pandemic might have hindered the process of developing a new review, but the current situation is nevertheless untenable. Cochrane’s ongoing failure to update the public on developments is troubling, especially since the 2019 review continues to be cited in defense of the crumbling treatment paradigm based on graded exercise therapy and cognitive behavior therapy. The matter is especially urgent given that the same cabal of investigators that has promoted this approach to ME/CFS for decades has now latched onto Long Covid in seeking to reverse its declining fortunes. The continued existence of the discredited 2019 review provides cover for this group to continue their harmful antics.
Cochrane should remove the 2019 review now and then, as quickly as feasible, produce a new one that actually adheres to acceptable evidentiary standards. The entire episode threatens to batter Cochrane’s reputation, if it hasn’t already.
List of organizations that have signed the forum’s petition
Science for ME
ME Global Chronicle
World ME Alliance
Physios for ME
European ME Coalition (EMEC)
Millions Missing Belgique
Millions Missing Canada
Foreningen for Myalgisk-Encefalomyelitis – Danish ME Association
Millions Missing France
German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V.
ME Advocates Ireland (MEAI)
Irish ME/CFS Association
Japan ME Association
ME Centraal, the Dutch ME-info channel
Post Viral Research Aotearoa
M.E. Awareness NZ
Long Covid Support Aotearoa
MECFS Canterbury (New Zealand)
ME Support New Zealand
ME Foreldrene (ME Parents)
Millions Missing Stavanger
Norwegian ME-association Trøndelag
Norwegian ME-association Rogaland
Norwegian ME-association Møre and Romsdal
Norwegian ME-association Innlandet
Norwegian ME-association Vestland
Norwegian ME-association Buskerud
Norwegian ME-association Troms
Norwegian ME-association Vest Agder
Norwegian ME-association Aust Agder
Norwegian ME-association Vestfold
Norwegian ME-association Oslo og Akershus
ME CFS Foundation South Africa
ONG PEM Asociación de Personas con Encefalomielitis Miálgica
RME Kronoberg Blekinge
United Kingdom – England, Northern Ireland, Scotland, Wales
Hope 4 ME & Fibro Northern Ireland, Board of Trustees
Bury/Bolton ME/CFS & Fibromyalgia Support Group, UK
25% ME Group (United Kingdom)
Welsh Association of ME & CFS Support (WAMES)
ME Association (United Kingdom)
Action for M.E. (United Kingdom)
LocalME – 52 local support and advocacy groups primarily across the UK