Cochrane Collaboration Cancels Independent Analysis of Exercise Therapy Review for ME/CFS
- #MEAction
- Jan 24
- 4 min read
#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.
“We express our dismay and concern at the rejection of our formal advice in 2024 to append an editorial note to the current version of the review stating that it is out of date and should not be used for clinical decision-making, as Cochrane has done for other reviews...
As an organisation that seeks to be a source of trusted evidence to inform decisions, there is an obligation for the Cochrane Collaboration to deal with outdated reviews (like this one) that are found to be clearly counter to that goal...
We look forward to your response, and request an opportunity to meet with you."
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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:
Learn about the start of the IAG:
Read Hilda Bastian’s response to Cochrane’s Recent Actions:
Read article in the BMJ about the decision:
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