A wave of renewed criticism has emerged following Cochrane’s decision to abandon efforts to update its highly contested 2019 systematic review, “Exercise Therapy for Chronic Fatigue Syndrome (ME/CFS),” which recommends exercise therapy as a treatment for the condition. Thousands of patients, researchers, and advocates are now calling for the review’s immediate retraction, arguing that it is outdated, harmful, and not aligned with current medical guidelines.
According to Clarivate’s Web of Science, the review, published in the Cochrane Library, has received 67 citations. Despite widespread concerns, Cochrane announced on December 16, 2024, that it would not pursue an update to the review, citing insufficient new research and a lack of resources to oversee the extensive work required.
Outcry from the Scientific and Patient Community
The decision to abandon the update has reignited concerns among experts and patient groups. Critics argue that the review presents an inaccurate and potentially harmful representation of treatment options for ME/CFS patients, many of whom experience post-exertional malaise (PEM)—a worsening of symptoms following physical exertion.
A petition launched in September 2023 has garnered more than 14,000 signatures from concerned patients and researchers, emphasizing that exercise therapy not only fails to improve ME/CFS symptoms but may actually exacerbate them. The petition states that the COVID-19 pandemic has heightened the urgency for an evidence-based reassessment, as many individuals with Long COVID now meet the diagnostic criteria for ME/CFS.
A recent update to the petition on December 18 accused Cochrane of failing to act in the best interests of patients, stating:
“We are not at all surprised by Cochrane’s reneging on their promise of a new updated review while they leave the 2019 review in place. They are clearly influenced by some of their leaders who support the psychobehavioral view of ME/CFS.”
Expert Opinions and Criticism of the Review
Several leading experts have criticized the review for being scientifically flawed and outdated. Jo Edwards, Emeritus Professor of Connective Tissue Medicine at University College London, labeled the review as “extremely poor quality” and misleading. Edwards noted that it contradicts findings by the UK’s National Institute for Health and Care Excellence (NICE), which no longer recommends exercise therapy for ME/CFS due to the potential harm it may cause.
“The review sends a message that is contrary to the NICE assessment and is simply not in the patients’ interest,” Edwards stated.
Moreover, the U.S. Centers for Disease Control and Prevention (CDC) has also updated its guidelines, emphasizing that exercise therapy is not a cure for ME/CFS and warning that conventional exercise routines may worsen symptoms for patients.
Hilda Bastian, a founding member of the Cochrane Collaboration and a prominent meta-scientist, expressed deep disappointment in how Cochrane handled the review update process. “It’s hard to find a word to describe how badly they treated everybody involved in this,” Bastian said, calling the organization’s behavior “appalling.”
Cochrane’s Response and Policy Challenges
In response to criticism, a Cochrane spokesperson clarified that their current editorial policy, updated in July 2019, no longer allows for reviews to be withdrawn if they are deemed outdated or superseded by new evidence. The spokesperson emphasized that withdrawal is only warranted if the content contains critical errors that undermine the validity of the findings.
“Our withdrawal policy now aligns with journal retraction policies and COPE best practice,” the spokesperson stated. “Cochrane has assessed requests to withdraw the review in question, none of which meet the criteria for retraction.”
Despite these reassurances, Edwards and other critics maintain that the review fails to reflect the latest scientific understanding and should be removed. “It’s misleading and shouldn’t be there,” Edwards said. “It’s now about 14 years out of date.”
Potential Bias and Internal Challenges
Critics have suggested that Cochrane’s reluctance to retract the review may stem from internal biases favoring psychobehavioral approaches to managing ME/CFS. Edwards highlighted that several of Cochrane’s founding members have long supported behavioral interventions over pharmacological solutions, which may have influenced the review’s persistence despite growing scientific opposition.
The Future of ME/CFS Research and Advocacy
As the scientific and patient communities continue to push for the review’s withdrawal, many are calling for improved processes to ensure that future Cochrane reviews align with contemporary research and patient needs. Experts like Warne suggest that clearer guidelines and accountability measures should be put in place to prevent similar controversies in the future.
For now, the contested 2019 review remains accessible and continues to be cited in research and policy discussions, raising concerns that it may misinform healthcare providers and patients about the best treatment approaches for ME/CFS.
The ongoing controversy surrounding Cochrane’s exercise therapy review underscores the critical need for evidence-based, patient-centered research in the field of ME/CFS. As the debate continues, stakeholders remain committed to advocating for a more accurate representation of effective treatment options, ensuring that patients receive care that aligns with the latest scientific understanding.