In this update, we tell you about a video from one of the leading YouTube science channels about exercise and ME/CFS, and about researchers and clinicians calling for the withdrawal of the Larun et al review. And we share Cochrane's response to our 2023 complaints and request to withdraw the review, received this month.

Leading YouTube science channel says 'Exercise actually makes chronic fatigue syndrome worse'
On 21 February 2025, the SciShow, a leading science content maker on YouTube with over 8 million followers, launched an 8 minute video 'Exercise actually makes chronic fatigue syndrome worse'. In the first day, the video had 124,000 views and generated 1400 comments, almost all of them supportive and including comments from people with ME/CFS reporting they have been harmed by exercise.

The video notes:
"And while there’s still a lot scientists don’t know about the condition, they’ve learned quite a bit in the last few years about how different it is from other kinds of fatigue. Including the fact that exercise actually makes it worse."

It's hard to produce 8 minutes of engaging content about ME/CFS and have it all rock solid. While not every detail in this video is completely right, the producers have done very well. They criticise the PACE trial which is the very poor quality large trial of exercise therapy that the Larun et al review relies on.

"One early management idea was to make patients slowly increase the amount of exercise that they did, until they could tolerate a healthy amount of exercise. If that sounds like a bad plan to you, given what we know about ME/CFS, you’d be absolutely correct. While this type of increased exercise can be helpful for physical therapy after an injury, this only makes ME/CFS symptoms worse. ...

Unfortunately, this idea was spread throughout the scientific community due to a controversial study called the PACE trial. The trial reported that patients with ME/CFS showed normal physical function after increasing their exercise. But the researchers defined “normal” functioning as lower than the measurement that patients needed to be included in the study... So they could get worse and still be counted as normal by the end of the study. And even though patients and professionals alike have denounced the results of this study, that paper has still not been retracted."

It seems that the understanding that exercise does not help ME/CFS has gone mainstream, while Cochrane continues to promote outdated views and to support poor trial methodologies.

45 clinicians and researchers call for the review to be withdrawn
On 20 February 2025, David Tuller sent a letter to Cochrane calling for the withdrawal of the exercise therapy review, signed by 45 clinicians and researchers from around the world. It concludes:
"The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria. [6] It should be withdrawn. Failing that, the review should be prominently tagged with an editorial note making clear that it is out-of-date and should not be used for clinical decision-making."

If you are a health professional or a ME/CFS researcher and want to add your name to David's letter, please contact him at davetuller@berkeley.edu.

Cochrane's response to our 2023 complaints
On 15 February 2025, we received the following email from Cochrane:

"...
We acknowledge that our previous approach to managing complaints in Cochrane led to delays and, in the case of your complaints, frustration on your part. We apologise for this and recognise that our previous process could be difficult to navigate, which is why we overhauled our complaints process last year.

In 2024 Cochrane undertook an assessment of all the previous requests to withdraw the review published in 2019, including those submitted by S4ME. This was done to consider whether any request met the threshold for Cochrane’s policy for withdrawal. Cochrane’s assessments took account of the current guidance on harms from the Cochrane Handbook for Systematic Reviews of Interventions, Cochrane’s policy on withdrawal from the Cochrane Database of Systematic Reviews, and external quantitative and qualitative evidence syntheses on the topic. This included those used in the UK National Institute for Health and Care Excellence (NICE)guidelines, the German Institute for Quality and Efficiency in Health Care (IQWiG) evidence review, and an updated systematic review prepared by the Center for Disease Control (CDC) in the USA.

The outcome of this assessment was that no grounds for withdrawal could be established by any of the requests for withdrawal. This process took several months to conclude, and we apologise for the delay in updating you on the status of your complaint.

Yours sincerely
Cochrane Complaints"

We assume that the lack of detail is to hide the poor basis for their decision. They appear to believe that simply saying 'we looked at all the complaints about the Larun et al review, including yours, and we decided that the review is fine' is an appropriate response to detailed complaints alleging that the review is causing serious harm to thousands of people. We note that no one at Cochrane is willing to put their name to the outcome. We are appealing the decision.

The response, as inadequate, unspecific and disrespectful as it is, now leaves us free to take our complaints to the authorities that monitor charities and academic publishers and to Cochrane's funders.

In 2022, Cochrane's Editor-in -Chief Dr Karls Shares Weisser noted when presenting a plan for the future of the organisation that
"While Cochrane is still widely recognized as the "gold standard" producer of evidence syntheses, there is clearly scope for improvement. The potential for our reputation to be impacted by inconsistent quality, slow delivery and poor author experience is a real danger. "

Sadly, the danger of Cochrane's incompetence is not just to its reputation, but also to millions of health service consumers. The debacle over its advice on the use of masks to stop infection transmission and the issues with its review on the use of steroid injections in pregnancy in low resource environments show that people with ME/CFS are not the only ones put at risk of harm.

Thanks
As the petition numbers climb towards 16,000, please keep telling people and organisations who you think might be interested about it, especially people who have dealings with and fund Cochrane.