2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

[dave30th]

Most people who are bad enough to need to see a specialist - unable to work, housebound or whatever - with long term fatigue type symptoms probably have ME/CFS I suspect.

perhaps but I have seen no evidence for this argument.

 

[dave30th]

They would not have recruited to PACE people they had identified as having depression instead.

This is assuming Prof White, Chalder, etc, were somehow experts in distinguishing between depression and what they view as chronic fatigue. I haven't seen much evidence to suggest that is the case.

 

[Jonathan Edwards]

this seems like something of a categorical overstatement. The statisticians I know, at least those working in public health/medicine, certainly understand about blinding.

And that is an anecdote @dave30th . Remember when Michael Buchanan came back to us and said that an eminent Cambridge statistician thought PACE was not too bad - so the deal's off? (Another anecdote.)

 

[Jonathan Edwards]

Can I post the letter? Or does that blow the chance that BMJ will?

I don't think BMJ will run it because I mention a name - Chalmers - and that is not allowed. So by all means post it. The version sent was:


Dear Editor,


Your 27th January News article by Jacqui Wise (2025) gives a fair account of the disgraceful behaviour at Cochrane over the abandonment of the planned rewriting of the poor-quality Systematic Review on Exercise Therapy for ME/CFS. What it may not convey is why people within Cochrane and outside should be so deeply shocked. The international healthcare community needs to be aware of the implications of Hilda Bastian's (2025) statement on her blog, Absolutely Maybe, given as the title of this letter ('the project' being the rewriting).


It has been suggested that withdrawal of the review rewrite had to do with Covid-19. But lockdown did not interfere with searching online, or Zoom meetings. It has also been suggested that a rewrite was not indicated because there are no new data (there are). However, the need for a rewrite was not to handle new data, but to replace a review considered substandard by many, including a previous Cochrane Editor in Chief, David Tovey. As a past Cochrane Review author I am not persuaded finances and reorganisation justify abandoning the project on their own, especially when Cochrane's integrity was seen to hinge on it. Bastian showed true loyalty to patients in trying to keep the project alive, despite her own personal tragedy. She was let down.


I had sight of another version of this review, never published, which prompted writing to Iain Chalmers to express concern about conflicts of interests. Chalmers dismissed my concerns, but it is now clear they were well-founded.


This really is a shocking story. Whoever was responsible for the decision to block the project should be required to publicly explain their actions. Otherwise, Cochrane’s reputation is worthless.



Yours faithfully,


Jonathan Edwards
Emeritus Professor of Medicine
University College London


References

Bastian, H. (2025) Absolutely Maybe. https://absolutelymaybe.plos.org/20...cientific-society-and-community-values-clash/


Wise J. (2025) Chronic fatigue Syndrome. BMJ News 27th January https://www.bmj.com/content/bmj/388/bmj.r169.full.pdf

 

[dave30th]

And that is an anecdote @dave30th . Remember when Michael Buchanan came back to us and said that an eminent Cambridge statistician thought PACE was not too bad - so the deal's off? (Another anecdote.)

yes, I remember that very well!! and I think the true state of affairs is that statisticians are all over the map, like everyone else.

 

[Trish]

Some off topic posts have been moved here

 

[Kitty]

As a native (American) English speaker, I'm not sure what it means.

I'd never heard of it before it appeared in the papers, but immediately understood it.

But I'm from Yorkshire and we had competitions for keeping live ferrets up your trousers, so it's not surprising ferret-related idiom's mother's milk to me.

ETA
Sorry—it means scrambling to reverse a public position you were previously as committed to as your own children, because it's no longer advantageous to you.

My comment includes a link to our petition.

Good post Peter, and thanks for the link.

 

[EndME]

Has somebody done a crosscomparison between CBT/GET and placebo in the Rituximab trials? My vague understanding is that those improvements surpassed those of CBT/GET in PACE? Do those that recommend CBT and GET also recommend a dosage of placebo by Øystein Fluge, if not why not? The mind must truely be playing some tricks if one is able to see that the one does nothing but still thinks the other is effective.

The Phase 2 trial clearly showed that you can have reported improvements without there being any efficacy in your treatment. How some people still go on to claim efficacy of a treatment when not even reported improvements show up in any meaningful way is beyond me.

 

[Sasha]

*

But I'm from Yorkshire and we had competitions for keeping live ferrets up your trousers

Quality.

 

[Utsikt]

How some people still go on to claim efficacy of a treatment when not even reported improvements show up in any meaningful way is beyond me.

It’s quite simple: They don’t care about the efficacy of the treatment. All they care about is being the one to deliver (and profit on) the treatment, and being seen as an expert. They might believe that they care about helping, but they are unable or unwilling to acknowledge that they don’t help most of their patients.

 

[dave30th]

given as the title of this letter ('the project' being the rewriting).

Jo, can you explain this last clause of the first paragraph? What is the title of the letter? And what does the parenthetical mean?

 

[Jonathan Edwards]

Jo, can you explain this last clause of the first paragraph? What is the title of the letter? And what does the parenthetical mean?

Sorry David, I posted a tidied up version of the letter without the title by pasting from Word.
The title is

“Advocates of the intervention launched a full-on bid to try to stop the project. “

which gives you the meaning of the bit in parenthesis.

 

[Hutan]

Please delete if this has already been posted, but looks like a german news source has made a long article about the Cochrane situation. https://www.riffreporter.de/de/wissen/mecfs-cochrane-aktivierungstherapie-get-pace-exercise-bewegung

Thanks to a member, we can post some excerpts, focussing on things that may be news to members:

According to the original announcement, the process was to be completed after two years. However, according to Bastian in her blog, advocates of activation therapy made "a comprehensive attempt to stop the project".

This even happened "more than once", adds a person familiar with the events in an interview with RiffReporter. Anyone who asks who was behind such initiatives is quickly pointed to Peter White and Michael Sharpe, the people responsible for the questionable PACE trial, and their apparently good contacts with the Norwegian scientists responsible for the previous Cochrane review. "There is a close connection," says a person who knows the people involved.

She also mentions the name of psychiatrist Simon Wessely, co-founder and long-standing editor of the group within the Cochrane network that deals with depression and neuroses.

This also applies to another person who is also said to have exerted his influence: Paul Garner, editor in charge of the Cochrane Group on Infectious Diseases. The British epidemiologist has nothing to do with the PACE trial, but has his own very personal history with the topic. Garner himself was seriously ill with Long Covid, which he made public in several articles. According to his own account, he also fulfilled the - current - diagnostic criteria for ME/CFS at times.

Garner now describes himself as cured, for which he blames one thing in particular: he overcame his fear of stress and slowly increased his activities. "You as a person and your belief in the connection between mind and body are the key to recovery," Garner wrote in an article. "You believe you can get better? Then you will recover." Within the Cochrane organization, Garner is said to have regularly referred to his own experiences.

However, all the internal criticism of the plan to revise the previous review did not put an end to the project. Initially, it was only delayed: the pandemic intervened, as did the Cochrane organization's strained financial situation. However, in August 2024, the Cochrane Editor-in-Chief responded publicly to a request: the new review was "on its way".

In the same year, according to Hilda Bastian, her independent advisory group insisted that the previous review be labeled as outdated so that no one would be guided by its statements. Those responsible at Cochrane did not respond.

Instead, the Cochrane editorial team surprised Bastian's group shortly before Christmas, on December 16, 2024, with an unsigned email. It stated that there would no longer be a new version.

The Cochrane organization told RiffReporter that the decision was made at a meeting of the Governing Board, Cochrane's highest governing body, which took place in Prague from 7-9 September - one of the few meetings for which no minutes have yet been published. For the Independent Advisory Group, there was apparently no information until that December 16 email.

There was practically no time for discussion afterwards: Just three days after the email, the Cochrane organization made its decision public. In a short statement on its website, it justified its decision with a "lack of resources" and "insufficient new research" on the topic of the review. A remarkable statement, especially since, according to information from RiffReporter, the new group of authors, which had already been terminated, had only just completed the protocol, i.e. the methodological framework for the review, and had therefore not even finished their literature research.

Was it a coincidence to make the decision public so close to Christmas - at a time when most people are paying attention to other things? And what exactly led to this decision? According to the Cochrane organization, the change of course has a lot to do with another review: a review on the benefits of masks to protect against corona infections.

When the organization published the review in 2023, its communication failed dramatically. Press reports around the world interpreted the analysis as if masks had no benefit whatsoever - which is not what the work says. Cochrane editor-in-chief Karla Soares-Weiser was forced to issue a public apology for the misleading information policy, but the damage had already been done. The criticism of the mask review - and even more: the handling of the criticism - shook the organization to the core. According to people involved, it created a certain amount of conflict fatigue.

A foreseeable, yet again fierce, further conflict over a new ME/CFS review did not seem very attractive. This attitude, the complaints from ME/CFS patients that had been piling up for a long time, plus the constant fire from Graded Exercise advocates who wanted to prevent a review update anyway - all of this combined apparently led to the decision to abandon the project.

If it was based on the assumption that this would avoid controversy, it was a grotesque misjudgement - and a reasonably foreseeable one, given the history of ME/CFS.

Finally, a review from 2019, relabeled as current, is now available on the Cochrane website, which in turn represents an only slightly edited version of the work published in 2015, which draws on ten-year-old studies and outdated diagnostic criteria. Which attests to the benefits of a therapy that is potentially harmful for some patients. And at the end of which the authors still thank Peter White, of all people, one of the main people responsible for the dubious PACE trial for his advice - a man who has long been criticized for his connections in the insurance industry, i.e. for conflicts of interest that the Cochrane network actually wants to avoid.

By way of comparison, when the German Institute for Quality and Efficiency in Healthcare (IQWiG), which also works on a strictly evidence-based basis, presented a report on the state of knowledge of ME/CFS therapies on behalf of the Federal Ministry of Health in 2023, it criticized the "high potential for bias" of the PACE trial and - unlike Cochrane - came to the conclusion that the benefits of activation therapy for ME/CFS have not been proven, while harm to patients cannot be ruled out. The British NICE and the US CDC have also warned of the risks of graded exercise for ME/CFS patients.

Their criticism caused quite a stir within the network, and the turnaround by those responsible caused some astonishment. "I find the decision to declare a ten-year-old review as sufficiently up-to-date unusual," said Jörg Meerpohl, head of Cochrane Germany, in an interview with RiffReporter. "The basic principle of Cochrane is: if relevant new studies emerge or methods have changed, a review is updated," emphasizes the Director of the Institute for Evidence in Medicine at the University Medical Center Freiburg.

In fact, one of the ten "basic principles" to which Cochrane is committed is "Keeping up-to-date". The principles also promise open and transparent communication and decision-making processes. However, if you try to ask questions about the decision to the organization, this does not come across.

It is a brief, general statement that does not even bother to address specific questions. There are a lot of them: Who exactly decided to reject the review update? Why was the independent advisory group not involved? Why is a significant change in the diagnostic criteria for ME/CFS not a reason to re-evaluate the study situation? The Cochrane press office does not address any of these questions, leaving a query completely unanswered.

After the abandonment of the review update was made public, the Cochrane organization even rushed to remove web pages on which it had listed the history of the project and the names of the review authors who were initially appointed and then removed. However, these pages are still available in the Internet archive - which makes a bit of an absurdity of the organization's own claim to transparency.

 

[ME/CFS Skeptic]

Their criticism caused quite a stir within the network, and the turnaround by those responsible caused some astonishment. "I find the decision to declare a ten-year-old review as sufficiently up-to-date unusual," said Jörg Meerpohl, head of Cochrane Germany, in an interview with RiffReporter. "The basic principle of Cochrane is: if relevant new studies emerge or methods have changed, a review is updated," emphasizes the Director of the Institute for Evidence in Medicine at the University Medical Center Freiburg.

Good that other people at Cochrane are interviewed about this.

Perhaps that is something advocates can do: contact regional Cochrane offices or the people involved, piont to the problems with the ME/CFS review and ask if they could help?

 

[Peter T]

Thanks to a member, we can post some excerpts, focussing on things that may be news to members:

Thank you for posting these extracts. What a great article, that even names names.

 

[Peter T]

Interesting that the names named were the most obvious ones: Peter White, Michael Sharpe, Simon Wessely and Paul Garner, but does not include some of the other Cochrane insiders we were speculating about.

I don’t suppose the British press will pick up on this, unless George Monbiot does. Is someone able to forward the link to him.

 

[Hutan]

What a great article, that even names names.

There is the odd place where some of the history isn't quite right, but if the reporter was coming to the topic cold, they have done a heroic job in setting the story out. They obviously spoke to some informed people.

 

[Trish]

I think this section is key - following the masks controversy where the editor had to make a public apology:

"According to people involved, it created a certain amount of conflict fatigue.

"A foreseeable, yet again fierce, further conflict over a new ME/CFS review did not seem very attractive. This attitude, the complaints from ME/CFS patients that had been piling up for a long time, plus the constant fire from Graded Exercise advocates who wanted to prevent a review update anyway - all of this combined apparently led to the decision to abandon the project."
____________

So they caved in to the Wessely, White, Sharpe, Garner pressure and are also laying some of the blame presumably on our letters, complaints and petition and we don't know what other complaints.

Shows it's all about power and influence, not science and patient safety.

And the decision was made at a board meeting over 3 months before the announcement.

Cochrane by its own actions has shown itself to be corrupt and weak. It should be defunded and abolished.

Sickening.

 

[Peter T]

The reporter says of Cochrane’s decision “If it was based on the assumption that this would avoid controversy, it was a grotesque misjudgement - and a reasonably foreseeable one, given the history of ME/CFS.”

This article illustrates how grotesque this misjudgement was if the article can get sufficient traction.

 

[Trish]

Can someone clarify for me the name of the publication of the German article and what sort of readership it has?