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

[SNT Gatchaman]

it sounds like Gøtzsche is something of a complex character

Noting that he's on the "Editorial Board" of a new very bogus journal, set up by GBD/Covid contrarians and anti-science Twitterati. (Including presumptive new head of NIH).

https://publichealth.realclearjournals.org/about-us/editorial-board/

Their take on peer review is, shall we say, unique. The article isn't peer-reviewed, the author is. If you're part of their in-group, your paper automatically preemptively passes "review". I guess you could call it preer review.

From https://publichealth.realclearjournals.org/publishing-philosophy/ —

Members of the Academy of Public Health can publish any of their public health research in JAPH. Through pre-submission gatekeeping at the author level rather than for each article, and by assuming that all our members have valuable scientific contributions that are worthy of publication, the research can be published more rapidly, without potentially having to submit it to multiple journals. Great research should be published as soon as possible to promptly advance science. Flawed research is better published together with critical reviews from the first journal to which it is submitted. Now such papers waste precious time by requiring multiple reviews and rejections by different journals, while most are still eventually published with a stamp of approval from a “peer-reviewed journal,” but without readers having access to those earlier critical reviews.

For more a more extensive discussion of our publishing philosophy, please read the Perspective on academic publishing that our Founding Editor-in-Chief Martin Kulldorff wrote for the inaugural issue in 2025: "The Rise and Fall of Scientific Journals and a Way Forward.”

 

[Jonathan Edwards]

Although it sounds like Gøtzsche is something of a complex character

Whenever you get a group of people like this with bee's nests in the pants of their hobby horses you will get a Lord of the Rings/Harry Potter situation where you can never quite work out who is a goodie and who is a baddie. They are all a bit nuts.

 

[Arnie Pye]

Noting that he's on the "Editorial Board" of a new very bogus journal, set up by GBD/Covid contrarians and anti-science Twitterati. (Including presumptive new head of NIH).

I wonder if he just has to make a living somehow, since being kicked out of Cochrane with his reputation unjustly? unfairly? tarnished.

 

[Trish]

The petition is now at 15,547.

It's also worth reading and liking the comments being posted on the petition. I try to keep up with reading new comments. They are a steady reminder of why we fight on. Here are a few recent ones:

Mona Loofs-Samorzewski 2 days ago
I have had CFS for 32 years and I have experienced first-hand how
damaging exercise and exercise therapy is to people with this condition.
David Spencer 3 days ago
I'm extremly disapointed is this report, our daughter died from ME 2 years ago mainly due to incorrect treatment including GET and CBT, which put Kara into a major relapse. see karajanesings.com
Jennifer Connell 1 week ago
I'm signing this petition because trying to exercise has made me permanently worse. I used to be a professional ballet dancer in Germany and now I can't even vacuum my house.

We have in our letters to Cochrane quoted a few of the comments from the petition. And we asked them to read the petition comments which are, along with the petition, addressed to Cochrane. And we and others over years have tried to make them take seriously all the harms evidence. Yet they have apparently been completely unmoved, preferring instead the occasional 'recovery' anecdote by the likes of Paul Garner who never had ME/CFS.

I know individual anecdotes are not scientific evidence, but surely the thousands reporting serious deterioration, even death, following exercise therapy must make some difference.

I can't get my head around this willful blindness of people at Cochrane.

 

[Sasha]

I can't get my head around this wilful blindness of people at Cochrane.

Nor can I.

I wonder if it's particularly easy for them to distance themselves from us and our concerns because our contact has been at a distance. We're not people - we're just a bunch of electrons on a screen, sending (deservedly enormous) screeds of information at them. We look like a giant admin matter.

This is not a burden I'd want to inflict on anyone, but has anyone asked for a meeting with them, even if it's only on Zoom? Can we somehow make ourselves real to them?

 

[Sasha]

BTW, even if they refuse a meeting, the line, 'Cochrane have refused to meet with us' would be very telling.

 

[Peter T]

We have in our letters to Cochrane quoted a few of the comments from the petition. And we asked them to read the petition comments which are, along with the petition, addressed to Cochrane. And we and others over years have tried to make them take seriously all the harms evidence. Yet they have apparently been completely unmoved, preferring instead the occasional 'recovery' anecdote by the likes of Paul Garner who never had ME/CFS.

I know individual anecdotes are not scientific evidence, but surely the thousands reporting serious deterioration, even death, following exercise therapy must make some difference.

Anecdotes are evidence, it is just that they are inconclusive, at risk of bias like unblinded trials with subjective outcomes. Further the threshold for acting on evidence of harms is quite rightly lower than in other circumstances, so includes anecdote. And obviously the larger the number of anecdotes the more they should be taken into account. I have not checked what is regarded as an appropriate level, but I strongly suspect if GET were a pharmacological intervention it would already be withdrawn on anecdote alone.

However we have in addition to anecdote survey evidence, which though potentially at risk of selection bias is stronger than evidence of individual anecdote. Larun et al (all versions) fails to acknowledge this survey evidence, despite it demonstrating only small numbers report benefit with much larger numbers of respondents reporting harm. When Cochrane made the decision to abandon the new exercise review purportedly on the grounds of no new evidence the largest survey of GET outcomes commissioned by NICE had been available for several years. The survey evidence though at risk of over reporting harm, incontrovertibly indicates a percentage of patients do experience harm.

Further it has been argued that the studies used by Larun et al were deficient in their mechanisms for recording adverse events, made worse by such as the PACE study where participants in the treatment arm were instructed to disregard any deterioration, so being primed not to report harm.

Also prior to Cochrane’s claim of no new evidence the Magenta trial’s results have been published, giving experimental data on exercise based intervention causing harm to children and young adults. So though this may not necessarily generalise to adults sure it requires attention in any review, and justification as to why it should not be generalised adults given.

[edited to clarify wording]

 

[Trish]

When Cochrane made the decision to abandon the new exercise review purportedly on the grounds of no new evidence the largest survey of GET outcomes commissioned by NICE had been available for several years. The survey evidence though at risk of over reporting harm, incontrovertibly indicates a percentage of patients do experience harm.

Yes, and they can't claim they were unaware of that survey, since we quoted data from it in our harms letter last March, which they promised to include in their investigation of their complaints.

 

[rvallee]

I know individual anecdotes are not scientific evidence, but surely the thousands reporting serious deterioration, even death, following exercise therapy must make some difference.

The funny thing about this is that medicine is one of the only disciplines that relies on anecdotes. They call them case studies, and they very much are significant. Many drugs and products have been taken off the market based on initial anecdotal reports being investigated and confirmed to be part of a broader pattern, specifically anecdotal reports of harm, which far outweigh reports of benefits (e.g. Thalidomide).

They know the broader pattern is there. It has been consistently reported for decades. This isn't just a case of "the plural of anecdotes isn't data", although it literally is, but that the reports are not only entirely consistent with one another, both at a grouped level and out of individual data, but confirmed by multiple levels in the form of individual reports, even complaints, from trials and clinics all over the world, as well as surveys, both from the community itself and 'official' ones commissioned by some authority, and academic research.

But since they don't understand anything about the illness, they also understand nothing about what those reports of harm mean. Because the standard isn't about doing harm or not, it's that they are the judges of what is harm and what isn't, and the medical profession feels entitled to overrule hundreds of thousands (probably millions) of consistent reports of the same thing simply because they don't understand why.

This is really the sin here. It's the same as with any other form of bigotry: I don't understand why you need this, therefore you don't need it, and if I'm in a position to decide whether you have access to it, I will make sure to deny it from you. Just a completely self-centered process, based entirely on their perceptions in a way that explicitly rejects ours, all while abusing the worst possible standards and methodologies entirely because they frame everything as being about subjective perception, which they do explicitly because no objective benefits have ever been shown.

But obviously Cochrane isn't doing this just by themselves. They feel entitled to do this because doing this is normal. It's wrong, but it's entirely normal. Hypernormalization is a process by which the absurd is made to be not only acceptable, but, over time, necessary. It's how societies devolve out of stability, and medicine features its very own version of it. And the #1 feature of hypernormalization is that it becomes impossible to change, precisely because it makes the absurd the only rational option, thus making it impossible to even hold a rational discussion.

 

[rvallee]

I have not checked what is regarded as an appropriate level, but I strongly suspect if GET were a pharmacological intervention it would already be withdrawn on anecdote alone.

100% guaranteed

 

[Hutan]

PETITION UPDATE

Significant revelations
10 Feb 2025

Significant revelations from a German investigative journalist
In a detailed article in German, Martin Rücker, part of RiffReporter, presented some extraordinary findings from his investigation of the Cochrane story. He reported that Cochrane sources have said the decision to abandon the replacement review process was made, not on the grounds stated by Cochrane, but in an attempt to avoid dealing with controversy.

"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 [2024]".
He refers to a controversy where a Cochrane review appeared to support the idea that masks are not useful in the control of Covid-19 (for more on the mask review, see here).

Rücker continued:
"According to people involved, [the mask controversy] 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."

Rücker further said that pressure from exercise therapy supporters including Peter White and Michael Sharpe, both PACE trial principal investigators, and both having long term financial conflicts of interest in their paid role advising health insurance companies, and from Paul Garner had been influencing Cochrane's decision-making.

David Tuller in The Sick Times
Another investigative journalist, David Tuller, published a great article in The Sick Times '"Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review'.

His article provides an accessible summary of the events for people new to this saga. It includes comments from two of the writing team Cochrane had appointed to update the review:
Todd Davenport: "This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies"
Mary Dimmock: "We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients"
Tuller concluded ".. it appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well."

Tuller has also written about a letter submitted to the BMJ, a medical journal, by Professor Jonathan Edwards. Professor Edwards notes that it is clear that his previous concerns about Cochrane's conflicts of interests are well founded. He wrote
"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."

Science for ME's deadline for Cochrane looms
Two weeks ago, the Science for ME committee submitted a complaint to Cochrane about its failure to follow its complaint processes. Our complaint noted that we still have not had any meaningful response to the complaints we submitted in October 2023. We informed Cochrane that if we did not receive an appropriate response from them by 14 February 2025, we would have to notify various authorities of the failure of Cochrane's complaint system.

More complaints sent to Cochrane
Last week, the Science for ME committee submitted a detailed set of five new complaints with supporting evidence.

Complaints 1 to 4 focussed on the December 2024 relabelling of the 2019 Larun et al review as a 2024 review. An effect of the relabelling was to make previous critical comments that had been linked to the 2019 appear as though they had been addressed in the new version. These comments now appear with a note:
"Note: This comment relates to a previous version of this review:"
Given that the 2019 review is completely identical to the 2024 and that there was no response to the comments, the comments clearly apply equally to the 2024 version.

The relabelling of the review creates the false impression of a new review update that has considered recent research and addressed previous comments, just in time for ME/CFS guideline development processes in Australia and the Netherlands.

Complaint 5 addressed Cochrane's decision-making processes.
We concluded:..
"We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS. We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients."

Actions requested include removal of the 2024 version; an editorial note saying the review is outdated and should not be used for clinical care; standing firm against pressure from exercise proponents with vested interests; and re-considering the decision not to withdraw the 2019 review.

Thanks
We appreciate the journalists investigating Cochrane's actions; their articles are crucial in bringing awareness. We also appreciate all of you who are supporting the campaign. It has been heartening to see the number of supporters grow so rapidly over recent weeks.

We continue to be moved by comments posted on the petition. They help us to remain committed to working towards the withdrawal of the Larun et al review.

 

[Hutan]

But since they don't understand anything about the illness, they also understand nothing about what those reports of harm mean. Because the standard isn't about doing harm or not, it's that they are the judges of what is harm and what isn't, and the medical profession feels entitled to overrule hundreds of thousands (probably millions) of consistent reports of the same thing simply because they don't understand why.

Perhaps the long term physical harm that GET causes is not yet proven. But the various sorts of long term emotional harm should be easy to understand. It's basic psychology and anyone with empathy should be able to grasp it. Once you accept that GET does not produce a clinically meaningful benefit, then it's obvious that telling patients and their families and their doctors that the ill person can get better if they really want to, if they just put the work in and comply with therapist's directions, must cause harm.

If the person tries and fails to get better, they may feel a failure. And possibly not just a failure, but a person who has to endure a miserable illness for the rest of their lives because they are not morally strong enough to do what is required.

If the person knows that GET doesn't work and refuses to participate in the offered therapy, families and doctors may regard them as not wanting to get better, and withdraw support, lest they facilitate the person's illness.

 

[Turtle]

Perhaps the long term physical harm that GET causes is not yet proven. But the various sorts of long term emotional harm should be easy to understand. It's basic psychology and anyone with empathy should be able to grasp it. Once you accept that GET does not produce a clinical meaningful benefit, then telling patients and their families and their doctors that the ill person can get better if they really want to, if they just put the work in and comply with therapist's directions, then it must cause harm.

If the person tries and fails to get better, they may feel a failure. And possibly not just a failure, but a person who has to endure a miserable illness for the rest of their lives because they are not morally strong enough to do what is required.

If the person knows that GET doesn't work and refuses to participate in the offered therapy, families and doctors may regard them as not wanting to get better, and withdraw support, lest they facilitate the person's illness.

Many thanks for all the work you are doing. Moderator, highlighting, explaining, commenting and even giving a researcher a "nudge" in the right direction. Wow!


Here you point out something really important. GET causing profound psyclological harm.
It seems very strange to me that psychologists and psychiatrists are OK with causing patients to feel a failure and others withdrawing support.
I know someone who tried CBT and GET twice; and got worse twice. He had read PACE and was convinced it could cure him. Imagine how he felt, twice.

Maybe a good rethink about what their profession is about, is long overdue. When how patients feel does not matter anymore.
Closed till further notice would be a good idea.

 

[Hutan]

That's very kind of you @Turtle, just part of the team here.

It seems very strange to me that psychologists and psychiatrists are OK with causing patients to feel a failure and others withdrawing support.

I think they must genuinely believe that their therapies work. And so the benefit outweighs the harm. And perhaps, the emotional harm is just part of the patient's journey on the way to overcoming the 'vicious cycle of fear' or whatever. No gain without pain. The feeling of failure will inspire you to comply better next time. The withdrawal of familial support will allow you to stand on your own two feet. Tough love.

 

[Jonathan Edwards]

Perhaps the long term physical harm that GET causes is not yet proven. But the various sorts of long term emotional harm should be easy to understand. It's basic psychology and anyone with empathy should be able to grasp it. Once you accept that GET does not produce a clinical meaningful benefit, then telling patients and their families and their doctors that the ill person can get better if they really want to, if they just put the work in and comply with therapist's directions, then it must cause harm.

This s the thing that cannot be denied. Nicely put in simple terms.

 

[Utsikt]

Just a reminder that a Norwegian 13 year old boy attempted suicide after trying LP that was recommended by Wyller. This was in 2011.

Had a breakdown two weeks later
The boy, who had just turned 13, participated in the course along with five other young girls and their parents.

– There was a hallelujah atmosphere at the course, and one of the first things he heard was that if he didn't recover, it was his own fault, his father tells NRK.no.

The course instructor does not recognize himself in this description.

At the end of the course, the boy was asked, according to his father, if he was well.

– “No, but I have gotten much better,” he replied.

After completing the course, the boy experienced a slight improvement, but two weeks later he collapsed. His mother found his son in his room one morning where he had attempted to take his own life.

"He couldn't recover, and felt it was his own fault. He was devastated that he hadn't managed to commit suicide," says his father.

https://www.nrk.no/livsstil/forsokte-selvmord-etter-me-kurs-1.7891470

 

[Sasha]

I've never 'liked' a post while liking it less. This is a horrific case.

 

[tornandfrayed]

PETITION UPDATE

Significant revelations
10 Feb 2025

Significant revelations from a German investigative journalist
In a detailed article in German, Martin Rücker, part of RiffReporter, presented some extraordinary findings from his investigation of the Cochrane story. He reported that Cochrane sources have said the decision to abandon the replacement review process was made, not on the grounds stated by Cochrane, but in an attempt to avoid dealing with controversy.

"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 [2024]".
He refers to a controversy where a Cochrane review appeared to support the idea that masks are not useful in the control of Covid-19 (for more on the mask review, see here).

Rücker continued:
"According to people involved, [the mask controversy] 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."

Rücker further said that pressure from exercise therapy supporters including Peter White and Michael Sharpe, both PACE trial principal investigators, and both having long term financial conflicts of interest in their paid role advising health insurance companies, and from Paul Garner had been influencing Cochrane's decision-making.

David Tuller in The Sick Times
Another investigative journalist, David Tuller, published a great article in The Sick Times '"Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review'.

His article provides an accessible summary of the events for people new to this saga. It includes comments from two of the writing team Cochrane had appointed to update the review:
Todd Davenport: "This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies"
Mary Dimmock: "We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients"
Tuller concluded ".. it appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well."

Tuller has also written about a letter submitted to the BMJ, a medical journal, by Professor Jonathan Edwards. Professor Edwards notes that it is clear that his previous concerns about Cochrane's conflicts of interests are well founded. He wrote
"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."

Science for ME's deadline for Cochrane looms
Two weeks ago, the Science for ME committee submitted a complaint to Cochrane about its failure to follow its complaint processes. Our complaint noted that we still have not had any meaningful response to the complaints we submitted in October 2023. We informed Cochrane that if we did not receive an appropriate response from them by 14 February 2025, we would have to notify various authorities of the failure of Cochrane's complaint system.

More complaints sent to Cochrane
Last week, the Science for ME committee submitted a detailed set of five new complaints with supporting evidence.

Complaints 1 to 4 focussed on the December 2024 relabelling of the 2019 Larun et al review as a 2024 review. An effect of the relabelling was to make previous critical comments that had been linked to the 2019 appear as though they had been addressed in the new version. These comments now appear with a note:
"Note: This comment relates to a previous version of this review:"
Given that the 2019 review is completely identical to the 2024 and that there was no response to the comments, the comments clearly apply equally to the 2024 version.

The relabelling of the review creates the false impression of a new review update that has considered recent research and addressed previous comments, just in time for ME/CFS guideline development processes in Australia and the Netherlands.

Complaint 5 addressed Cochrane's decision-making processes.
We concluded:..
"We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS. We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients."

Actions requested include removal of the 2024 version; an editorial note saying the review is outdated and should not be used for clinical care; standing firm against pressure from exercise proponents with vested interests; and re-considering the decision not to withdraw the 2019 review.

Thanks
We appreciate the journalists investigating Cochrane's actions; their articles are crucial in bringing awareness. We also appreciate all of you who are supporting the campaign. It has been heartening to see the number of supporters grow so rapidly over recent weeks.

We continue to be moved by comments posted on the petition. They help us to remain committed to working towards the withdrawal of the Larun et al review.

Excellent reporting from RiffReporter as well as David Tuller's article. It's shocking but not surprising. At least it's evidence of the suspected influence of the bpsers - White, Sharpe and Garner.

What are Cochrane thinking? Rather than getting "conflict fatigue" they should have recognised that the mask review was an unsatisfactory piece of work and withdrawn or revised it. Kicking Larun et al into the long grass doesn't make it go away. I woudn't be surprised if they've persuaded themselves that not updating it is somehow a neutral act rather than total capitulation to the exercise proponents.

 

[Trish]

I woudn't be surprised if they've persuaded themselves that not updating it is somehow a neutral act rather than total capitulation to the exercise proponents.

It gives me nightmares thinking how the BPS people will be gloating over their win.
And Cochrane people probably also gloating over their clever solution. All their BPS chums no doubt congratulating them on such a fine decision, not giving in to pressure from all those militant patients.
It's sickening.

 

[Trish]

This s the thing that cannot be denied. Nicely put in simple terms.

I think the long term physical harm cannot be denied either. If GET were a drug treatment the yellow card system would have received thousands of reports of severe deterioration that started during or just after GET.

If it were a drug, would there not have been talk of withdrawal, or at least strong warnings on the side effects leaflets warning of possible short or long term deterioration.

I recall in your expert testimony to NICE that you warned that subjective reports of detrioration in surveys should be take at least as serously as subjective reports of improviement in trials.