Trial By Error: Cochrane Tells ME/CFS Patients to Go F–k Themselves

By David Tuller, DrPH

Cochrane has just given the finger to the international ME/CFS community. After jerking everyone around and promising for five years to conduct a new review of exercise interventions for the illness, the organization abruptly abandoned that commitment this week. On Monday, Cochrane posted the following message on its website:

“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.”

(Under the circumstances, it is incumbent upon Cochrane to withdraw the outdated review that the cancelled one was supposed to replace. To that end, the Science For ME online forum has re-upped its earlier call, via petition, for the organization to do just that. As of this posting, the petition has more than 13,000 signers.)

Also on Monday, members of the team selected to write both the protocol for the new review and the review itself received a terse message alerting them to these developments. The team had submitted a draft protocol to Cochrane almost two years ago but had received no substantive response about its disposition–until now. It seems that Cochrane did not share the draft protocol with members of an Independent Advisory Group, a parallel team appointed to provide guidance and oversight during the process.

The message from Cochrane to the members of the writing team read:

“Dear [names of writing team members],

“This email is to inform you of developments with the submission of your protocol on exercise therapy for ME CFS. There have been some discussions within the different leadership groups of Cochrane about the priority of this review in recent weeks.

“The outcome is that Cochrane has decided not to proceed with an update. Producing a meaningful update of this review is not a priority based on insufficient new research in the field and the available organizational resources to oversee this work. 

“You will shortly receive notification that your submission has been withdrawn. This will outline your rights in relation to the content of the protocol.

“Kind regards,
“Office of the Editor in Chief

So that’s it. Five years of effort wasted. Five years of promises un-promised.

It is typical bureaucrat-ese to send a letter from an “office”—as in, the “office of the editor in chief”–rather than from the responsible individual. In this case, I assume we can assume that Karla Soares-Weiser, Cochrane’s actual editor in chief, agrees with the decision issued by her “office.”

The decision represents a complete turnaround from the organization’s position at the time it published the 2019 review from Larun et al, itself an iteration of previous work. The review recommended exercise, albeit with multiple hedges, but it was so fraught with issues that it should never have been published in the first place. However, powerful forces among the GET ideological brigades pressured Cochrane to release it. The drama spilled out into public view–an embarassment for the organization.

When it was finally published, Soares-Weiser made it clear she considered an updated review to be of major importance. As she noted in comments posted on Cochrane’s website at the time:

“Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.

“We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings…I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”

Cochrane has repeatedly failed to keep patients “informed of progress” over the last five years, despite appeals and requests for updates. Nonetheless, the organization appears to harbor no sense of responsibility for these lapses or feel a need to express any sympathy or compassion towards the patient community it has now tossed aside like yesterday’s trash. Todd Davenport, a professor of physical therapy at the University of the Pacific in Stockton, California, and a member of the writing group, expressed his dismay in a thread on bluesky that included this heartfelt sentiment about Cochrane’s action: “It is some profoundly fucked up shit. And I mean that in the most professional and academic way.”

The sudden decision has generated lots of questions. What changed “in recent weeks” that would lead Cochrane to drop a long-standing commitment to produce a new review? How did the review go from being a high priority to not being a priority at all? Who made the decision, and was it influenced by input from Professor Paul Garner and Professor Sir Simon Wessely, among other high-profile GET proponents? Does Cochrane plan to apologize for having strung everybody along for no reason for years and years, not least the members of the writing team and the Independent Advisory Group?

Beyond that, the first articulated reason for not proceeding—“insufficient new research”—doesn’t hold water. First, as Soare-Weiser’s previous remarks make clear, the dispute over the 2019 review did not revolve around the quantity of new research but around how to interpret reported findings from studies selected based on a review protocol written in 2002. One frequent criticism of the 2019 review, for example, was that it excluded all objective measures from the studies selected. Since those measures almost invariably yielded poor results, including them in the new review would by itself have impacted the conclusions. So the argument about “insufficient new research” is a dodge. A red herring. A transparent excuse to drop the project, not a legitmate reason.

Second, there is definitely some significant new research that is directly relevant.  The null results from a much-hyped pediatric trial of graded exercise therapy–spearheaded by Bristol University’s former grant magnet, the methodologically and ethically challenged Esther Crawley–were published earlier this year, These findings undermine claims that GET is an effective intervention—at least for kids. In other words, they contradict the conclusions of the 2019 review. It seems self-serving for Cochrane to dismiss them as “insufficient” grounds for proceeding with a new version. Maybe kids don’t matter to Cochrane?

The argument that Cochrane faces a shortage of resources is not quite as easily dismissed as bullshit. Producing good systematic reviews takes time! What doesn’t make sense here is that Cochane suddenly figured out, after five years, that it doesn’t have the bandwidth for this project. So that point, too, turns out to be another smokescreen. Updating the review is simply not a priority. Cochrane either doesn’t want to do it, or has been pressured not to. Or perhaps both.