#MEAction is raising the alarm about Cochrane Collaboration’s sudden decision to abandon an independent analysis of the 2019 review of exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Cochrane has also altered the date of publication to 2024 to make the review appear current when, in fact, its sources are all 10 years old or older.
Cochrane Reviews are well-known systematic reviews of medical interventions, and are internationally recognized. Cochrane agreed that their exercise review for ME/CFS needed reanalysis, commissioning an Author Group and Independent Advisory Group (IAG) to create a new protocol for the review and reanalyze available information about exercise in ME/CFS with community input. The IAG was made up of a coalition of representatives from ME/CFS advocacy organizations, clinicians with interest in ME/CFS, and methodological experts in systematic reviews. Jaime Seltzer, #MEAction’s Scientific Director, was one of the members of the IAG.
Years of Work Abandoned
Each author and IAG member read through hundreds– in some cases, thousands– of pages of material and attended meetings over nearly five years during the pandemic. While it’s typical to take years for a paper to be retracted or even receive a notice of concern, multiple obstacles stymied progress.
Then, in December 2024, Cochrane:
- “Updated” the 2019 Larun review by changing the date of publication to December 2024 without altering the content;
- Stated the review was unnecessary, with the argument that no important information about exercise in ME/CFS had come to light since their 2014 literature search;
- Scrubbed the site of any mention of the IAG and its process– though these are all available on the Wayback;
- Released this information right before holiday break, a strategy typically employed when organizations want bad news to have less impact.
The IAG issued an open letter to the chair of the Cochrane Governing Board, expressing grave concerns over Cochrane’s abrupt decision to cancel the independent analysis without prior consultation or transparency, and without properly addressing criticisms of the review.
Altering the date of publication from 2019 to 2024 is particularly egregious because it means that the review can now be cited as if the analysis were new instead of reliant on sources 10 years old or older. To clinicians reliant on the review, this implies that Cochrane created a reanalysis protocol; analyzed the data using that protocol; incorporated new sources; and decided to endorse the original review’s findings. In reality, no such process occurred, explained #MEAction’s Scientific Director, Jaime Seltzer.
Why This Review is so Harmful
People with ME/CFS have long reported a deterioration in their health after undergoing exercise therapy, even at low levels and for short periods of time, as seen in large-scale surveys. Studies show that people with post-exertional malaise – the defining symptom of ME/CFS and Long COVID – have abnormal physiological results following exercise, including cardiac preload failure, impaired systemic oxygen extraction and metabolic deregulation, which is not a result of deconditioning.
The ME/CFS community’s ongoing concern with the exercise therapy review is that it relied on studies using outdated diagnostic criteria that didn’t require post-exertional malaise (PEM), the hallmark symptom of ME/CFS, and omitted key data on harms and long-term outcomes. Despite these flaws, the review concluded that “exercise therapy probably has a positive effect on fatigue.”
“The current Cochrane review’s flawed conclusions perpetuate interventions with low chance of success and high risk of harm for millions of people with ME/CFS and Long COVID,” said Seltzer.
Eroding Trust in Cochrane
This isn’t the first time in recent history Cochrane has made such a public blunder in public health. Cochrane produced a disastrous review on the safety and efficacy of masking to prevent COVID-19, as reported in Scientific American. Another of Cochrane’s recent fumbles was on steroid injections during elective Cesarean sections. The analysis included three poor studies that ended up swaying the analysis to conclude steroids in Cesareans had results good for mother and baby, despite evidence that steroids might harm babies’ brains. A re-analysis omitting those studies reversed the review’s conclusions.
“At a time where we need to trust institutions like Cochrane to guide us on public health, I have been dismayed to find I cannot depend not just on their conclusions regarding masking or ME/CFS but ultimately, their integrity as an institution,” said Seltzer. “If they have fumbled two of the most important public health measures in the time of COVID– infection-associated chronic conditions and masking– how can we trust their process and conclusions in the future?”
Further Reading:
Learn about the major flaws in the original analysis:
Cochrane Analysis: What’s Here, What’s missing, Conclusions – #MEAction Network
Learn about the start of the IAG:
Cochrane redux – #MEAction Network
Read Hilda Bastian’s response to Cochrane’s Recent Actions:
When Journal Scientific Society and Community Values Clash
Read article in the BMJ about the decision:
Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy | The BMJ
8 thoughts on “Cochrane Collaboration Cancels Independent Analysis of Exercise Therapy Review for ME/CFS”
Even if Cochrane now fails to undertake a new review of exercise based intervention in ME/CFS it is imperative that action is taken to prevent more harms arising from their old review. Over sixty patient organisations have co-signed a letter demanding that Larun et al (2019 now misleadingly dated 2024) be withdrawn on the grounds that it failed to address harms, ignored evidence from objective outcome measures but rather used only subjective outcomes in open labelled trials, relied on data using out of date definitions of ME/CFS and the most recent data it includes is from the now discredited PACE study and that it contravenes Cochrane’s own guidelines for their reviews.
More recent analysis by NICE in the UK and the US CDC drew the opposite conclusion that graded exercise therapy should be contra indicated for our condition, even though Cochrane’s slight of hand now has this review dated after the publication of these two accounts.
Further well over 14,000 people have signed a petition (see https://chng.it/XqXkNTMQzH ) demanding this damaging review be withdrawn). The S4ME updates on the petition page provide a devastating record of Cochrane’s failure to engage with the problems of this review and their failure to observe their own complaints procedures.
The discontinued new review processes was beset by delays arising from complaints and pressures from un named supporters of Larun et al, and increasing it seems that the current chaos is the results of pressure from interested parties defending the old flawed review regardless of good science or Cochrane’s own procedures and standards.
Like Hilda’s blog, I think this analysis misses the mark. The focus is on the diagnostic criteria, the selection of cohorts wider than just people who have PEM.
I guess there isn’t just one ME/CFS community, because the ones I am part of generally have a different ongoing concern. Many of us here are more concerned about the flaws in the trial design of the studies included in the review that can make any treatment appear to provide a small benefit.
The danger in carving out a special place for people with “ME/CFS” to not be given exercise therapy is that people who have not been diagnosed yet will be diagnosed with something else, Long Covid or FND. And with the ‘only subjective outcomes in unblinded trials’ trial design recipe that makes it possible for anything to be ‘scientifically proven’, exercise therapies will, erroneously, be shown to be mildly useful for these people with different labels.
I’m not sure why the people involved in the IAG who are speaking either don’t appear to understand that, or, if they do understand it, why they are pushing this short-sighted focus on diagnostic criteria.
The methodology is flawed; it is not an either-or matter.
Are we seeing with Cochrane’s current disaster over this ME/CFS exercise review what Brian Hughes termed ‘eminence based’ medicine rather than evidence based medicine or perhaps even ‘science by cronyism’?
It’s challenging to speak to this without certain knowledge, Peter. Factually, they are not following their own stated processes or principles.
A recent German newspaper article addresses this controversy (title Google translated as ‘ME/CFS: New dispute over potentially harmful activation therapy shakes Cochrane network’ see https://www.riffreporter.de/de/wissen/mecfs-cochrane-aktivierungstherapie-get-pace-exercise-bewegung ).
I have not had access to the full article only extracts, but the reporter cited Cochrane insiders amongst others, suggesting that there was a sustained covert campaign against any new review happening, naming Michael Sharpe, Peter White, Simon Wessely and Paul Garner as active in this. If correct it is deeply sad that such prominent scientists should work so had to block open scientific enquiry.
I tried to post a couple of times over the last few days but as they have not appeared it may be that I have done something wrong. Easily done with my brain fog.
I am grateful for the work MEAction are putting it holding Cochrane to account, but am interested in the reasons for limiting requests to an editorial note rather than a full retraction.
Hi, Peter! You didn’t do anything wrong. It took me a few days to be able to set aside the time to approve and respond to comments.
Regarding this one, I think the goal right now is to ensure the review is marked clearly that it is not current/not to be used. As the IAG’s letter has stated, this is what Cochrane has done with such reviews in the past, which makes it likely they will do so in the present.