The decision to abandon a process to re-evaluate a review recommending exercise therapy for chronic fatigue syndrome (ME/CFS) has reignited calls for the article to be withdrawn.
The 2019 version of the Cochrane Library review, “Exercise therapy for chronic fatigue syndrome,” has accumulated 67 citations, according to Clarivate’s Web of Science.
The review recommends exercise therapy to treat ME/CFS, a treatment approach that drew widespread criticism from the patient community and researchers, who say physical activity isn’t an adequate remedy for the condition. According to the petition, Cochrane’s former editor-in-chief admitted the review in question wasn’t “fit for purpose,” although the editor-in-chief’s statement did not use that phrase.
Following outcry, Cochrane then launched a pilot project in October 2019 to take a second look at the review, which involved creating an independent advisory group and a public consultation.
But following delays stemming from the COVID-19 pandemic and after Cochrane lost much of its funding in the UK, the publication announced December 16 it is abandoning the update.
“This was 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,” a Cochrane spokesperson told Retraction Watch. “We have no plans to revisit this decision.”
Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.”
The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said.
A petition calling for the review to be withdrawn started in September 2023 and has so far attracted more than 14,000 signatures from concerned patients and researchers.
“The Covid-19 pandemic has created even more need for evidence-based assessments of proposed therapies for ME/CFS,” the petition reads. “Many of the millions of people who are developing Long Covid meet ME/CFS criteria and have the symptom of post-exertional malaise, contraindicating Graded Exercise Therapy.”
An update to the petition posted December 18 stated:
Sadly, 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 are well known to support the psychobehavioural view of ME/CFS. No prospect of a new Cochrane review makes removal of the harmful 2019 review even more vital.
Guidelines released by the US Centers for Disease Control and Prevention also state exercise therapy is not a cure for ME/CFS, and note exercise routines for healthy people may be harmful for patients with the condition.
According to Edwards, the general experience of ME/CFS patients is also that exercise therapy doesn’t work. “Not only do they not work, but they seem to upset people badly and make them worse,” he said. “It’s not quite clear why that should be but it seems to be the case.”
Edwards said the review in question was “being widely cited and used for these purposes” but did not have at hand an example of the document being cited in policy documents.
The Cochrane spokesperson said the journal changed its editorial policy in July 2019 to no longer withdraw reviews if they are superseded by another systematic review or if the review question was considered outdated or no longer relevant. By our count in the database, from 2009 on, Cochrane has retracted or ‘withdrawn’ over 500 reviews and their revised versions.
“Our withdrawal policy now aligns with journal retraction policies and COPE best practice,” the spokesperson added. “COPE 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. Cochrane has assessed requests to withdraw the review in question, none of which meet the criteria for retraction.”
According to Bastian, while the review has “really severe problems,” it doesn’t meet the threshold for withdrawing review articles under the journal’s new policy.
“A number of the original Cochrane founders are very enthusiastic about things like exercise therapies that can be managed in general practice,” Edwards said. “There’s a clear indication that an easier part of the motivation for Cochrane was to try and reduce the hype over high-tech pharmaceutical interventions.”
Edwards said the review should be retracted. “It’s misleading and shouldn’t be there,” he said. “It’s now about 14 years out of date.”
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I imagine there is a *no* missing here
“…changed its editorial policy in July 2019 to longer withdraw reviews”
Fixed — thanks.
“Edwards said the review in question was “being widely cited and used for these purposes” but did not have at hand an example of the document being cited in policy documents.”
https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi/a-z/g/graded-exercise-therapy-chronic-fatigue-syndrome
Is it any wonder that those with a financial interest in “curing” what amounts to side effects of poor sleep, would advocate for drug experiments over exercise?
ME/CFS is not “side effects of poor sleep”.
One of the issues is mitochondrial dysfunction which is why exercise is not an appropriate therapy. It can have debilitating affects and lead to a permanent decline in condition.
Do you know of any tests for chronic fatigue syndrome?
My understanding is that there are not any.
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Diagnosis made by exclusion.
I still believe that it is a highly contested disease. I wonder if the “demand by thousands” for the withdrawal of the review (signatures on a petition are easy to collect) is political.
How is exercise going to do you any harm? Most people could do with more exercise.
I wonder if “diseases” like “chronic fatigue syndrome” have hidden consequences, for example, perfectly sane physicians leaving the profession when faced with patients with undiagnosable, untreatable diseases. Throw in some middle-class, educated complaining, and it’s a nightmare!
A diagnosis from a neurospect scan done simultaneously with a CT scan to detect ME/CFS at AZ Maria Middelares in Gent, Belgium in their radiology department. They can detect poor blood circulation in the brain. A good specialist will probably do it in combination with some blood tests. If brain fog is part of your symptoms it’s one way to diagnose this illness.
“They can detect poor blood circulation in the brain.” Hardly specific.
“Brain fog” has many causes.
Is that just Gent, or all over Belgium?
Some Gent (Belgium) specific publications some to light!
https://pubpeer.com/publications/C7ED4AC80340ADDC02E969713C8863
https://pubpeer.com/publications/BDFA4FC0D8D614FE1A5D8EC53814DD
https://pubpeer.com/publications/FF0B9F89793A79A8138F0EE869F877
Could the people with the CT scan to detect ME/CFS at AZ Maria Middelares in Gent make a diagnosis?
Keep it local!
The literature is now absolutely full of papers documenting the many neurobiological and metabolic abnormalities in CFS and long covid patients. The science has moved on from dismissing these patients, and you should, too. The fact that there is no single diagnostic test does not mean that the biological abnormalities are unknown. It means that they do not translate into an easily deployable lab test with clear reference ranges. For example, testing cytokine levels is extremely difficult and requires special expertise and equipment that is not readily available outside of research settings.
Additionally, there is a medical distinction between fatigue and sleepiness. Only a subset of CFS patients suffer from excess sleepiness akin to narcolepsy, and it is not a diagnostic feature. Good science means changing your mind in the face of evidence. Please educate yourself on this matter and stop flippantly perpetuating harmful stereotypes. This is a debilitating disease that affects numerous body systems, and it’s biological nature is recognized by the CDC, NIH, and WHO.
Cochrane has forfeited all credibility. I read the the major study out of England of graded exercise therapy and it was appallingly bad. Among other things, the investigators changed their definition of remission from what was specified in the protocol in such a way that people could do worse after treatment yet meet the benchmark score for remission. Reviewers should never have approved their papers for publication, and Cochrane’s own reviewers should have recognized that the shoddy quality of the work meant it shouldn’t be included in any reviews or meta-analyses.
What has happened to the Cochrane Library? They used to be a very respected organization.
It got hijacked by psychosomatic ideologues who think the answer to everything is psychotherapy and exercise.
As opposed to, a pill for every ill?
ANY absolutism is bad medicine!
Maybe the problem is more that these ideologues are too dogmatic and not enough open-minded.
Strawman. Nobody is saying that.
The premise that chronic fatigue syndrome is a disease might be very weak.
In general, but likely other problems such as ADHD, which I’d never heard of until visiting the U.S., various personality disorders and autism, “everybody is on the spectrum”, may not be real diseases. They are all big business, whether paid for privately, or by the state, will depend where you live.
Tony Blair, middle-of the road, the British version of Bill Clinton.
https://www.lbc.co.uk/news/tony-blair-mental-health-benefits/
“The former Labour Prime Minister said that many issues simply represented “the challenges of life”, rather than medical conditions such as anxiety or depression.”
For decades medical schools have taught that “stigma” is a bad thing, but without it societies may fall apart.
It is quite funny, but more depressing, when you see posters at universities and research institutes proclaiming “mental health awareness week”, or month. What do universities think that faking does to scientists’ mental health, yet in large part universities downplay, and cover-up scientific faking?
There needs to be “stigma” and shame about scientific faking.
Hilda Bastian has written a blog post that goes into more detail about the whole affair: https://absolutelymaybe.plos.org/2025/01/24/when-journal-scientific-society-and-community-values-clash/
Apart from problems with diagnosis and fierce apposition to any who advocate alternative treatments, we need to be aware that there is a growing industry in publishing supporting papers (often through emerging country research organisations) and vilifying or threatening legal action against any person or publisher that dares present a paper suggesting otherwise. Calls for retraction are a part of this. It is well documented behaviour for herbal remedies and pharmaceutical manufacturers. Pilate’s comment 2000 years ago “what is truth” is still relevent today.
Apart from the problems that chronic fatigue syndrome may not be real.
How much more of a problem can there be than that?
Crooks may jump on the bandwagon that is not real, still doesn’t make the bandwagon real.
In my response above, I should have added that I’m a biostatistician with decades of experience doing medical research including clinical trials. My comments on the poor quality of the study is not due to dogmatism, but due to violation of accepted research standards. Once a study has a protocol in place defining the endpoints, it is not acceptable to change them. It is especially not acceptable to change them so that a participant who gets worse over the course of the study meets the new definition of remission. I read the study protocol and resulting paper years ago and was appalled that it had passed peer review at a prominent journal.
My simple point is why are people getting all “up in arms” about a review about something that is not real to start with? Why don’t they get all “up in arms” about it not being real in the first place?
Same reason they blame climate fluctuations on CO2. Billions in funding… and when the model is wrong, billions more in funding to update the model. Rinse and repeat.
are you trying to say that anthropogenic global warming is not real? if so, why not just say that?
ME/CFS is real, by which i mean that people feel what is described as ME/CFS. It is not to do with whether or not you sleep. It is poorly understood and seriously under-funded considering the scale of the problem. It could be several different conditions that we don’t understand or it could be one. We just don’t know right now. Please stop saying its not real. It is real.
Do you know of any tests or clinical trials proving that ME/CFS is not real? Surely you’re not suggesting that you are more knowledgeable than the CDC, WHO, NHS, NHMRC, etc., on this topic and must have access to information unknown to the rest of us.
In the meantime, a recent paper about the inconsistencies in attitude towards ME/CFS and evidence https://doi.org/10.3390/medicina60010083
Do you know of any tests or clinical trials proving that ME/CFS is real?
The NHS acknowledges the condition, as does the NIH. Though the causes are unknown – its regularly the case that the cause of an illness is unknown – there are ongoing trials/studies attempting to identify it and to find out more. e.g. DECODE-ME, and CURE-ME (LSE). We may not know the details, but people do feel symptoms that are currently grouped under the term CFS/ME. When we know more it may be described in other ways, but people do feel like this, it is debilitating for them, even disabling.
Feeling is not the same as real. The NHS recognises it as a diagnosis of exclusion. A nightmare for primary physicians.
No more federal grants anyway!
https://www.nytimes.com/live/2025/01/28/us/trump-news-executive-orders
Chronic fatigue syndrome symptoms are tiredness and pain. Fibromyalgia symptoms are pain and tiredness. Symptoms of aging, poor diet, and sedentary lifestyle are tiredness and pain and pain and tiredness. Try some drugs that your body will adapt to until the dose is so high you die, or try exercise?
I wonder why you bother making these comments under the guise of academic discourse or to uncover “scientific faking” if you are not willing to engage with evidence that may be contrary to your opinions. The ONE paper I linked mentions many tests that are used for diagnoses (not exclusionary) and research findings including immune, vascular, and metabolism irregularities. There are also findings that ME/CFS aetiology is NOT linked to psychological symptoms. Not that you will read them (:
Many things can be true simultaneously: Immune, vascular, and metabolic irregularities arise from lack of exercise… psychosomatic illness is a great source of revenue for ‘scientists’… CDC bureaucrats are not infallible gods…