Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit et al

Utsikt said:
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Apparently, everything can pass as evidence for conditions we don’t understand.

The point about punitive systems is interesting - it deviates from the usual secondary gains rhetoric.
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But here we can see why they didn’t want to go for sticks, they believe it works better to gaslight them with «non-pressurising support» to induce compliance.
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It is possible to argue for other sources of evidence, but only if you list all the sources of bias and ambiguity in the evidence you have and then seek alternative evidence sources with different biases in the hope of developing convergent evidence that takes you nearer to the correct conclusion. This can only begin to happen if the researchers are willing to be honest about their prejudices and the limitations of their methodologies.

However current bio psychosocial (or more properly psychogenic) research relies on a single inconclusive experimental design repeated endlessly, assertion from personal authority and increasingly carefully selected anecdote (ignoring all contrary anecdote and survey information). This is as about as it is possible to get from convergent evidences utilising a variety of diverse sources. This is the strategy of alternative practitioners and snake oil salesmen.
 
Especially since in the context of medicine, other sources of evidence aren't worse forms of evidence, they are much higher grades. Clinical trials, even well-conducted ones, are some of the lowest form of evidence used by any group of professionals. They are awful in almost every way, the very last resort when reliable sources of evidence aren't possible.

In the context of medicine, this means biological evidence, obtained from laboratories conducting very detailed biomedical studies, or bioinformatics or the product of advanced technology. Those other forms of evidence have to be better than so-called evidence-based medicine, by definition, as otherwise they are simply ridiculous. In most other professions, they don't even look at evidence of this type, argue for anything lower and you will simply be dismissed as a crank.

But of course this is exactly what's been argued for in recent years: worse forms of evidence. Hypocritical forms, it should be said. Anecdotes, theirs, and the small number they want to emphasize, not the many times larger ones that contradict everything they claim. Having argued for clinical trials for years while they were slowly debunked, now it's the opposite. Same as with the NICE guidelines, prior to 2021 they were absolute, can't do anything, the guidelines don't allow it, and now they're just suggestions. What a scam.

Because when you get to those lower levels of evidence, you are actually at a lower level than even alternative medicine, which can seem to be reliably effective when using the methodologies used by psychosomatic ideologues. Which is exactly why they will inevitably smother the whole field, and the only reason it hasn't happened yet is because the only way it really works is by having cultural support for a particular treatment model, even when everything else is the exact same.
 
Peter T said:
Well this about says it all, drastically reduce the criteria for what constitutes meaningful evidence so we can do what we want and then we will claim to save you money, though no one will evaluate the costs arising from that treatment no working or even causing further harm.
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Peter T said:
However current bio psychosocial (or more properly psychogenic) research relies on a single inconclusive experimental design repeated endlessly, assertion from personal authority and increasingly carefully selected anecdote (ignoring all contrary anecdote and survey information). This is as about as it is possible to get from convergent evidences utilising a variety of diverse sources. This is the strategy of alternative practitioners and snake oil salesmen.
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The story on this is straight forward enough: They have been unable to deliver solid evidence of their basic claim by the standards the rest of science is supposed to meet, indeed the standards that they themselves instituted half a century back. So instead of admitting they have nothing, that their hypothesis is false, they just lower their standards until they can claim a 'success'. One of the oldest tricks in the book. Just keep moving the goalposts.

What really angers, stuns, and scares me is just how easily they have been able to get away with it, so brazenly, for so long, and continue to do so. As I keep saying, they could not have done this without the sustained robust support and protection from both the rest of the medical professional, and the broader political and financial and media classes. The inevitable end result being widespread technical and ethical corruption, a ferocious resistance to accountability and reform, an accelerating descent into toxic woo, and increasing numbers of patients being both abandoned, and blamed and punished for the profession's gross failure.
 
Caroline cupit et al & this PACFIND was funded from 2019 by versus arthritis (who’d joined the MECFS CMRC)

From 2021, the research director of VA was Dr Neha Issar-Brown -
www.midandsouthessex.ics.nhs.uk

Dr Neha Issar-Brown

Currently Director of Research and Health Intelligence at Versus Arthritis – UK’s biggest Musculoskeletal research charity.
www.midandsouthessex.ics.nhs.uk www.midandsouthessex.ics.nhs.uk

Versus Arthritis appoints next director of research - Research Professional News


Pre 2020, Dr Neha Issar-Brown was at the MRC and had been their rep with the CMRC. At the 2016 CMRC conference, she hosted an hour long session on writing better research proposals and asserts the ME community has to build itself up and find people to collaborate with “before questioning funders regarding lack of investment"
 
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Cinders66 said:
Pre 2020, Dr Neha Issar-Brown was at the MRC
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This is how she responded to the 2017 issue about PACE:
Dr Neha Issar-Brown, Programme Manager, Population and Systems Medicine at the Medical Research Council (co-funders, along with the National Institute for Health Research, of the PACE trial), said:

“The Medical Research Council funded and supported the PACE trial after subjecting the research proposal to a robust peer-review process involving experts in the field, as is the case with all our funding decisions. This included ensuring adherence to standardised trials methodology and design principles. The researchers’ findings were then peer-reviewed before publication in journals. All research evolves by continually re-evaluating existing evidence and looking for new knowledge and we would always welcome high-quality research applications to better understand the underlying disease mechanisms, causes, prevention and treatments for this extremely debilitating condition.”
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This is all really over-padding my "evidence is completely irrelevant in evidence-based medicine" file. The thing is just overflowing. It's all so silly but also it's real life and lives are getting destroyed by complete nonsense.

I wonder where this leads next. Messiahs, probably. Maybe pithyas? Oracles? Some good old-fashioned reading-the-tea-leaves?
 
I think the PACFIND study and the people involved are important in the current push for holistic clinics for Medically Unexplained Symptoms. They have some interesting connections.
There are a series papers coming out of the PACFIND study, you can find them with the PACFIND tag.


Catherine Pope is one common factor in the papers. She is an Oxford academic, a Professor of Medical Sociology at the Nuffield Department of Primary Care. She is Chair of the NIHR Senior Investigator award committee. She is therefore involved in NIHR decision-making about research funding.
Her research interests encompass organisational change in health care, service delivery and reconfiguration, workforce and work in health services, and the impact of digital and Web technologies on health care and services.
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Catherine is a Trustee and Treasurer of the Foundation for the Sociology of Health and Illness. This operates the Journal of Sociology of Health and Illness and makes awards to post-graduates. The Foundation is funded by Wiley, Cochrane's publisher.



I recognised the name Chris Eccelstone in the author list, I have talked about him before, here. Some excerpts from that post:

Eccleston was previously a senior editor at Cochrane, including in the Mental 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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In 2020 Ecclestone was leaving Cochrane to work on "innovating new models of care in the treatment of chronic pain".

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.

It's not surprising that Garner is tweeting about PACFIND.

Those two are the only authors that I have spent a bit of time looking at for this, but there are a lot of links there to the problems we have getting good care.



Quoting some previous posts in this thread that are relevant.
Utsikt said:
Maybe we should stop giving the authors benefits (grants and employment) and stop assuming that they are scientists just because they and their friends say they are. They seem awfully confused about themselves, and it appears to be spreading when they talk about it. Luckily, I know some people that can help them with their unhelpful beliefs and behaviours.
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Jonathan Edwards said:
This is why it is so important that advocacy and support groups do not get 'into the tent' with health professionals who by their own admission live in fairyland.
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bobbler said:
I don't know whether (and we should look up each of these to check, along with also checking whther for example they are part of or making money from eg 'insurance medicine' type things) these individuals are tenured or are on fixed term contracts
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Cinders66 said:
Pre 2020, Dr Neha Issar-Brown was at the MRC and had been their rep with the CMRC.
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(Research director of Versus Arthritis, was the representative on the ME/CFS Research collaborative)
 
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In this paper, we draw on a qualitative, ethnographic investigation of services for people with fibromyalgia, being developed and delivered in the UK. This investigation was undertaken as part of the PACFiND study (Patient Centred Care for Fibromyalgia: New Pathway Design) (Macfarlane, 2021), and focused on twelve case studies. Each involved innovators with a special interest in chronic pain and/or fibromyalgia, and were typically defined as “biopsychosocial” services (Engel, 1981)—in contrast to established biomedical care. All orientated around general principles of holism (Shroff, 2011) and employed mechanistic explanations such as Central Sensitisation as the basis for treatments to dampen down the nervous system (Gatchel and Neblett, 2018).
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For simplicity, we mirror participants’ use of the term “biopsychosocial”, whilst also acknowledging ongoing debate about its specificity and usefulness (Borrell-Carrió et al., 2004).
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All services were self-described as “biopsychosocial” (Engel, 1981)—or similarly underpinned by principles of holism(Shroff, 2011)—but we use the term loosely.
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They selected 12 services to be case studies, recruited through professional networks and online searches. It's interesting that they use the term biopsychosocial here, as in an earlier PACFIND paper, they thoroughly rejected the biopsychosocial paradigm as being subservient to the biomedical model and not useful. As far as I could understand, they were advocating for a third way that was holistic like BPS but didn't involve suggesting patients had a psychosomatic illness, because that tended to make them lose trust with service providers and go off to make more appointments with specialists and seek more costly tests in an attempt to prove that they were really ill.

It all seemed a bit 'nod, nod, wink', as there was still a belief that rehabilitation could fix people. To me, it seemed like a rebranding - 'the patients don't like BPS and psychosomatic and being told it's their fault they are sick, it causes them shame, so let's call the approach something else'. Although they had difficulty saying exactly what this new way was.

But here, they seem to have grudgingly given up and are going with BPS, because that is what the services use. They do their best to present central sensitisation as a new and cutting edge concept - it's an 'emerging neurobiological' thing.
 
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