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

I assume that the reason why people in Cochrane don't see a problem with the review or believe reports of harm is partly because they believe that ME/CFS is psychosomatic.

I've just been reminded of the quote by Eccleston, previously a senior editor at Cochrane, including in the Metal Health and Neuroscience Network:
Embodied: The psychology of physical sensation (2015) by C. Eccleston
Chronic fatigue patients appear to demonstrate a high level of self-criticism and negative perfectionism (Luyten et al., 2011). People are highly critical and demanding in a self-defeating pattern that fuels ruminating thoughts of failure, and so depression. This pattern can be self-perpetuating as people fail to reach unrealistically high targets, which reinforces a belief of personal inadequacy. Specific beliefs are that the fatigue is uncontrollable, likely to lead to catastrophic outcomes, and that further activity will lead to physical damage. All appear to play a part in maintaining a lack of engagement with activity (Lukkahatai and Saligan, 2013).

Other strong beliefs, perhaps fuelled by the social context of CFS as a contested illness, are beliefs about the causes of the disease and what needs to be done. Simply put: if one believes strongly that exercising is not only going to be fatiguing but that it will cause damage, then one is unlikely to exercise. Further, one is likely to consider anyone who is suggesting exercise to be at least unwise and perhaps unkind. Ironically, the person with CFS can appear to observers to be passive and resting. The opposite is normally true. People with fatigue tend to be actively ruminating about possible solutions, and often desperate for change, but may be engaging in self-defeating attempts to achieve unachievable solutions.
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Cochrane has named seven Emeritus Coordinating Editors in 2020, celebrating their achievements and recognizing their efforts over many years of service. In this profile, we hear from Chris Eccleston, who is Coordinating Editor of Cochrane Pain, Palliative, and Supportive Care (PaPaS).

Can you tell us about yourself?

I am a professor of pain science at the University of Bath, where I am the director of the Centre for Pain Research. My team and I are active in behavioural science and chronic pain, from mechanism to treatment innovation and development.
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At that time Ecclestone was heading off to work on "innovating new models of care in the treatment of chronic pain". So, I don't think he is officially a part of Cochrane now.

(AI told me that he was also managing to act in Dr Who as well as being a Professor of Pain! Not true.)

This from a programme of a March 2025 conference for the NZ Pain Society
Chris founded and directed the Bath Pain Management Unit from 1994-2008, including the first residential paediatric pain programme. He continues to consult internationally on the development on new services and team training in chronic pain management.

He has a keen interest in evidence based medicine and research integrity, having served 10 years as the coordinating editor of Pain, Palliative and Supportive Care Cochrane Review Group, and is a founder member of the Entrust-PE Framework (https://m.entrust-pe.org/).
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He had some role in the evaluation of the Larun et al review in 2019 - see here.

But, anyway, that stuff about negative perfectionism and being highly critical and demanding and having beliefs of personal inadequacy is a view about people with ME/CFS that a key Cochrane staff member wanted to have in the public domain. Combine that with Garner and Glasziou and it's pretty clear that they think we just need to get over ourselves and go for a jog in the park.

That Ecclestone is running a pediatric residential pain programme is concerning.
 
Trish said:
That section about pwME quoted is such a ridiculous fantasy. And deeply insulting.
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Chris was my first (big) boss at Cochrane. I initially worked for the Pain and Palliative Care Group as an information specialist. We got on OK...until we didn't (when I started to challenge his authority on a few things - not ME related). And then I grew to really dislike him, and I think the feeling was mutual!
 
Hi there - not sure if this is the right thread, but it refers to my appeal to Wiley (Cochrane's publisher) to investigate my allegation of misconduct against Cochrane's Editor in Chief. I should have seen this coming, but they have decided to investigate whether Cochrane has followed the right procedure in investigating the allegation rather than the allegation itself, so it remains un-investigated apart from Cochrane telling me, without any reasoning, they have determined there was no misconduct. This is the latest correspondence

From me to Wiley yesterday

It is the job of COPE to investigate whether Cochrane followed the correct processes.
I asked the Wiley IACR team to investigate my allegation against the Editor-in-Chief, not to investigate Cochrane’s complaints process.
Please could you confirm that you are not prepared to investigate an allegation of misconduct of a Wiley Editor because Cochrane has determined there was no misconduct?

Best wishes
Caroline

From: Wiley Research Integrity <researchintegrity@wiley.com>
Sent: 23 April 2025 15:34
To: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Subject: Re: Allegation of misconduct of Editor in Chief of Cochrane Library [157253]

Dear Ms Struthers,

I would like to inform you about the outcome of our investigation regarding your allegation of editorial misconduct against the Editor-in-Chief of the Cochrane Library, Dr. Karla Soares-Weiser, and regarding the complaints handling processes at Cochrane.

As I mentioned in an earlier email, the IACR team at Wiley have been investigating to ensure that Cochrane followed the correct processes regarding the handling of your complaints to them. While Cochrane has the primary responsibility to handle complaints regarding their publications and editorial conduct, Wiley and the IACR have the role of ensuring that Cochrane's own guidelines and, more broadly, COPE principles are followed.

In your complainant to us, you stated that "Cochrane have refused to investigate [an] allegation of editorial misconduct", which you submitted to Cochrane on 1 May 2024 via their updated general complaints process. You also stated that Cochrane's conflict of interest panel "also refused to investigate" when you had raised the same complaint through that channel.

Our investigation found that Cochrane handled those two complaints and came to the conclusion that there was no conflict of interest or other editorial misconduct. Cochrane closed those cases on or around 3 and 25 June 2024, respectively.

Cochrane's determination was that neither complaint raised any substantial new concerns above those that Cochrane had already investigated in an earlier process (begun in 2023). That is, they reconfirmed their earlier findings that there was no editorial misconduct by Editor-in-Chief Dr. Karla Soares-Weiser in her handling of one of Cochrane’s reviews. Furthermore, Cochrane states that you were informed of their determination in June, and they referred back to the previous responses that you had received.

We are satisfied that Cochrane handled these two complaints of yours in a proper manner and that their decision to refer back to an earlier finding did not constitute a refusal to investigate. My team and I also did not find any reason to disagree with Cochrane’s conclusion: that there was no editorial misconduct by the editor. It is not evidence of misconduct for an editor to, for example, express eagerness to complete the evaluation of a manuscript/review.

If (as I understand it) the core of the matter is a scientific disagreement with Cochrane over the contents of the CFS/MS review, then please note that this is not something we can interfere with. You and others are of course free to disagree with the contents of the review, and it's understandable that you would then disagree with the editorial decisions made in relation to its (re)evaluation. However, publishing ethics norms dictate that editors have the right and responsibility to make decisions on manuscripts, to evaluate reviewer reports, and to accept or deny appeals. Journal owners and publishers, including Cochrane and Wiley, must respect editorial independence and cannot overrule editors outside of cases of clear misconduct (which is not the case here). As such, Wiley cannot take any further action and must consider this investigation closed.

Kind regards,
Dr. Max Owen Williams
Associate Research Integrity Auditor
John Wiley & Sons Ltd
 
Caroline Struthers said:
My team and I also did not find any reason to disagree with Cochrane’s conclusion: that there was no editorial misconduct by the editor. It is not evidence of misconduct for an editor to, for example, express eagerness to complete the evaluation of a manuscript/review.
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Are they saying that the did any independent investigation and came to the same conclusion, or that they agree with Cochrane’s conclusion based on the content of Cochrane’s investigation?
 
Utsikt said:
Are they saying that the did any independent investigation and came to the same conclusion, or that they agree with Cochrane’s conclusion based on the content of Cochrane’s investigation?
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I'm not sure. The sentence "Journal owners and publishers, including Cochrane and Wiley, must respect editorial independence and cannot overrule editors outside of cases of clear misconduct (which is not the case here)". Perhaps I should ask them why this is not a clear case of misconduct. I wonder what would be?!
 
It's all gone very quiet. No updates from Hilda the IAG on their efforts, and nothing yet from Cochrane on our appeals.

I have just posted this on Hilda's talkpage.

trishrhymes
April 28, 2025 at 9:36 pm
Your comment is awaiting moderation.

Hi Hilda,

Thank you for your ongoing efforts on this highly problematic situation.

Have you had any response? I see the review remains unchanged and there is no response to your submitted comment.

We at Science for ME have had no response beyond acknowledgement to either of our appeals, submitted one and two months ago, despite the standard response from Cochrane Complaints saying we would receive in interim update if not completed in 3 weeks. I will write to them again.

Any suggestions on what we can do next?

Best wishes,

Trish Davis
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“Involving patients and members of the public has long been an important part of Cochrane’s work,” says Karla Soares-Weiser, Acting Chief Executive of Cochrane. “It ensures that our reviews are not only scientifically rigorous, but also meaningful and relevant to the people they aim to serve. We hope that this name change makes clear that anyone can contribute to Cochrane, and we welcome diverse experiences from patients and members of the public across the world.”
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The gaslighting continues..
 
More from the announcement of the adoption of Patient and Public Involvement term:

Patient and public involvement helps to make our research ethical, relevant, and impactful. Insights from members of the public can shape meaningful research questions and produce useful findings. People living with a health condition are often in a better position to identify unanswered questions and determine what research would most likely improve their quality of life.

Involving patients and members of the public also improves transparency, informed consent, ensures respectful and practical participation, and enhances communication by presenting information in accessible and useful formats. Ultimately, it helps research to better serve the needs of patients and the public.
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That's A grade hypocrisy.


It seems that you have to be the right sort of patient and member of the public. Nearly 80 patient charities from something like 25 countries aren't the right sort. Paul Garner is.
 
Utsikt said:
The gaslighting continues..
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That is interesting choice of wording/re-ordering of words from Karla Soares-Werner there:

“It [patient involvement] ensures that our reviews are not only scientifically rigorous, but also meaningful and relevant to the people they aim to serve."

rather than 'it [patient involvement] not only ensures that our reviews are scientifically rigorous, but also meaningful and relevant to the people they aim to serve'

This basically says to me that she believes patient involvement doesn't make things scientifically rigorous but that they do that without it.

ANd its place is merely about claiming/trying (?) to 'ensure' reviews are meaningful and relevant to the people they aim to serve.


Is that fallacy(?)/belief a culture issue re: the profession or specific to this person or organisation etc?

Is that also telling us a lot about the ME/CFS review and protocol where in effect the organisation wants to make their own definition of truth for what 'scientifically rigorous' is ? ...and patient involvement , or indeed patients from the outside etc potentially now being seen to 'have a specific place' or purpose ?
 
Trish said:
That article reads like a sick joke. What are people with ME/CFS then? Slugs? Why don't we warrant inclusion?
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maybe the clue is in the following quote that @Utsikt flagged.... my bolding?

bobbler said:
“It [patient involvement] ensures that our reviews are not only scientifically rigorous, but also meaningful and relevant to the people they aim to serve."
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As we know from responses which as I remember specificially included King's college london's clinic saying in response to their breaching the new ME/CFS guideline something along the lines of 'we treat CFS/ME ... so we can carry on offering this old stuff' based on playing sophism that there both exists something called CFS/ME which is different and pretending that what they offer has any mandate or evidence that warrants them doing it at all, nevermind using ME/CFS funding for it.
 
Hutan said:
More from the announcement of the adoption of Patient and Public Involvement term:



That's A grade hypocrisy.


It seems that you have to be the right sort of patient and member of the public. Nearly 80 patient charities from something like 25 countries aren't the right sort. Paul Garner is.
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But also A grade insight - I sensed there seemed to have been a big sea-change a few years ago where the profession was going to start being asked to be more beholden to patient insight, experience and voice. It was really important, although seriously behind the times, as a move to make the profession actually outcome-led rather than supply-driven.

But certainly from the ME/CFS side of things it has often been treated like a threat to be manipulated and games played with. Those who have deliberately tried to put on a fake innocent face whilst doing anything but approach that move towards patient involvement with a straight bat should theoretically have stood out like a sore thumb but..

The only lesson psychosomatic bps learned from the Nice guideline and analysis was to go off and use more propaganda-type materials like developing Recovery Norway (a website with apparent testimonials for specific treatments) at fervour. I guess as well they decided to link arms with those behind the lightening process at this point too, and took on board their marketing lessons.


And, Of course you are right on the 'right sort' issue but I suspect this relates to my point in the comment above. Those they aim to serve insist on either de-existing ME/CFS, or at least anything that acknowledges or allows them to exist as citizens, and to do that they require the delusion of their false-beliefs CFS to be maintained as existing or true. Patients need to be invented to put on that play.

The word colonisation is springing to mind but there might be another more apt term?

I'm also sure the word patient is interesting here given how dangerous the clinics are and that most are a distortion of that term because to be at said clinic you both have to be:
- in the early stages, so haven't had the crash/harm yet from the treatment and are in the throes of having your feedback distorted by rewording therapy
- deemed as compliant
- want to attend and continue to do so despite what is being offered

It's a tricky one if your target audience don't (or in the case of eg those working in the health profession, there is potentially also the 'aren't allowed to') believe we are allowed to exist - only partly because of their 'two opposite things can't both be true'


Anyway I don't have the genius right now but it is probably worth picking apart what they are up to (argument and plan wise)
 
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Caroline Struthers said:
I think the culture and belief is that [insert gender/ethnicity/religion] can only provide "lived experience" of what's meaningful and relevant to them, and can never contribute to or criticise the science itself.
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I modified it to demonstrate the absurdity of such beliefs.

I wonder what they do with scientists that are also patients. Maybe they become tainted when they are sick, so they are no longer worthy of doing science.
 
Caroline Struthers said:
I think the culture and belief is that patients can only provide "lived experience" of what's meaningful and relevant to them, and can never contribute to or criticise the science itself.
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I both have ME/CFS and am a graduate student who has been involved in ME/CFS and LC research for years. I’ve noticed such a difference in how I’m treated depending on whether I’m perceived as a junior scientist or a patient first and foremost.

Even if I’m clearly able to use all the correct terminology and demonstrate an understanding of complex topics (as I should be able to as a researcher), at most I’m treated like some vaguely impressive hobbyist. Even if I explicitly and repeatedly state that I have relevant research experience. It’s become so obvious that even my PI noticed once.

One specific thing I’ve noticed again and again is that other researchers/clinicians will go out of their way to correct me on specific scientific concepts/terminology even and especially when I wasn’t wrong in the first place. I just get misinterpreted so that others can swoop in to put me in my place.

All this is to say, I think you’re right on the money. The paternalism against patients goes deep. Obviously someone who understood Rational Scientific Thinking would never end up sick in the first place (sarcasm).

[edit: cross posted with @Utsikt on the same point]
 
jnmaciuch said:
I both have ME/CFS and am a graduate student who has been involved in ME/CFS and LC research for years. I’ve noticed such a difference in how I’m treated depending on whether I’m perceived as a junior scientist or a patient first and foremost.

Even if I’m clearly able to use all the correct terminology and demonstrate an understanding of complex topics (as I should be able to as a researcher), at most I’m treated like some vaguely impressive hobbyist. Even if I explicitly and repeatedly state that I have relevant research experience. It’s become so obvious that even my PI noticed once.

One specific thing I’ve noticed again and again is that other researchers/clinicians will go out of their way to correct me on specific scientific concepts/terminology even and especially when I wasn’t wrong in the first place. I just get misinterpreted so that others can swoop in to put me in my place.

All this is to say, I think you’re right on the money. The paternalism against patients goes deep. Obviously someone who understood Rational Scientific Thinking would never end up sick in the first place (sarcasm).

[edit: cross posted with @Utsikt on the same point]
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I have the same experience, and in addition to being a patient and a junior scientist, one of my degrees also make me a clinician. It still doesn't matter.
 
Midnattsol said:
I have the same experience, and in addition to being a patient and a junior scientist, one of my degrees also make me a clinician. It still doesn't matter.
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Hugs. It’s so frustrating, isn’t it. At best you’re treated like a novelty who’s there for the superficial “social awareness” quota of “respecting lived experience.”

Not like you’d have anything useful or productive to say on the actual science.

[Edit: I think it’s even worse when there’s an indication that I’m a young woman (meeting face to face, my email signature listing my first name + “PhD Student”, etc. ). It’s like waving a red cape in front of a bull at that point.]
 
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