January 24, 2025 – Cochrane Library has made the shocking decision to abandon an independent analysis of its 2019 review of exercise therapy for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) – and has altered the date of publication to make the review appear current when, in fact, its sources are 10 years old or older. 

ME/CFS experts and advocates have long expressed significant concerns about the review’s methodology, conclusions, and the harm its treatment recommendations could cause to people with ME/CFS – and now Long COVID – as exercise treatments are known to worsen symptoms and decrease functional capacity, long-term in people with ME/CFS. Both the Centers for Disease Control and Prevention and the UK’s National Institute for Health and Care Excellence caution against exercise therapy for ME/CFS due to its potential to exacerbate symptoms. Healthcare providers and policymakers around the world rely on Cochrane’s systematic reviews of healthcare interventions. 

The Independent Advisory Group (IAG), commissioned by Cochrane to look into the exercise review in 2020, issued an open letter today 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of our formal advice in 2024 to append an editorial note to the current version of the review stating that it is out of date and should not be used for clinical decision-making, as Cochrane has done for other reviews,” wrote members of the IAG, comprised of a coalition of ME/CFS organizations. 

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, explained IAG members.

“It falsely 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,” said #MEAction Scientific Director, Jaime Seltzer, who is a member of the IAG. 

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 future?”

For more information or to set up a interview with #MEAction’s Scientific Director, please email press@meaction.net. 

About #MEAction: #MEAction is a grassroots advocacy organization fighting for recognition and equity for people with ME/CFS and Long COVID.