The anticipated update to recommendations around graded exercise therapy for people with chronic fatigue syndrome was abruptly canned in December.
Cochrane has unexpectedly cancelled the planned update of its controversial 2015 exercise therapy for chronic fatigue syndrome review, and its independent advisory group of stakeholders are demanding answers.
Often considered the “gold standard” in evidence-based medicine, Cochrane reviews are meant to be assessed periodically to determine whether updates are needed.
According to Cochrane’s own data, the median time period until an update is needed is around 5.5 years.
Up to a quarter of reviews were considered out of date within two years, and 15% were considered out of date within one year.
The exercise therapy for chronic fatigue syndrome review – which concluded that exercise therapy probably has a positive effect on fatigue in patients with chronic fatigue syndrome – was last fully updated in 2015.
Cochrane made several tweaks to the original review, ultimately announcing a full update in October 2019.
And then the pandemic hit; what was supposed to be a two-year process ballooned outwards to three. Then four.
In December 2024, the independent advisory group appointed by the Cochrane Collaboration to help guide the update received an unsigned email informing them that the Cochrane’s Governing Board, Executive Leadership Team, and Editorial Board had decided to cancel the review’s update.
In an open letter to Cochrane sent last week, the independent advisory group – which consists of people with lived experience of chronic fatigue syndrome as well as clinicians and researchers – expressed confusion at the decision.
“For nearly five years, we supported the project despite several lengthy unexplained delays,” the letter said.
“We were not asked for advice at key points, such as when the editorial unit received the draft protocol.
“Communication from the [independent advisory group] to senior Cochrane management remained collegial throughout.”
A Cochrane spokesman told Rheumatology Republic that the update had been abandoned “due to insufficient new research in the field and a lack of capacity to oversee the work required, which significantly exceeded the resources normally allocated to an individual review”.
“We have no plans to revisit this decision,” they said.
The reason that this is a big deal stems from the fact that the conclusions of the original review were widely disputed by patient advocates and the chronic fatigue syndrome community at large.
When covid hit, and long covid emerged, that community rapidly expanded.
Suddenly, there were far more patients with chronic fatigue-like symptoms and far more eyes on research in the space.
In 2021, the UK changed its NICE guidelines to say that graded exercise therapy should not be provided to patients with mild to moderately severe chronic fatigue syndrome, a move that saw three clinician members of the guidelines committee resign in protest.
According to the open letter, on the same day that that Cochrane informed the independent advisory group members that the update was cancelled, management “wiped” the webpage with public reports from the group.
What’s more, the group allege that Cochrane specifically disregarded advice to mark the current review as being out-of-date.
“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,” they wrote in the open letter.
“Instead, Cochrane re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current, again without discussion with us, its appointed advisors.
“Cochrane has thereby further intervened in this issue, without having properly addressed criticisms of the review, subsequent evidence and developments in the field, or its very outdated methodology.”
According to the Cochrane spokesman, the review does not warrant a full withdrawal.
“[Committee on Publication Ethics] best practice guidance states that retraction might be warranted if an article contains such seriously flawed or erroneous content or data that their findings and conclusions cannot be relied upon,” they said.
“Cochrane has assessed requests to withdraw the review in question, none of which meet the criteria for retraction.”
The advisory group, led by Cochrane founding member Dr Hilda Bastian, said the organisation had a duty to “deal with” outdated reviews whether they meet criteria for formal withdrawal or not.
