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

Hutan · Apr 8, 2025

I assume that is 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 · Apr 8, 2025

Hutan said: ↑

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
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That section about pwME quoted is such a ridiculous fantasy. And deeply insulting.

Caroline Struthers · Apr 8, 2025

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!

Peter Trewhitt · Apr 11, 2025

Albeit slowly the number of signatories on the petition continues to grow, now at 15,934.

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

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

Hutan Moderator Staff Member

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Peter Trewhitt Senior Member (Voting Rights)

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