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

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Social Science & Medicine​

Available online 10 June 2025, 118313



Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care​


Caroline Cupit 1, Teresa Finlay 1, Catherine Pope 1
For the PACFiND Team2
Rosemary Hollick 2, Gareth T. Jones 2, Louise Locock 2, Gary J. Macfarlane 2, Paul McNamee 2, Kathryn R. Martin 2, Peter Murchie 2, Ernest Choy 3, Sue Ziebland 4, Karen Walker-Bone 5, Chris Eccleston 6, David A. Williams 7, Neil Basu 8

2University of Aberdeen
3University of Cardiff
4University of Oxford
5University of Monash
6University of Bath
7University of Michigan
8University of Glasgow

1University of Oxford
Received 22 January 2025, Revised 8 April 2025, Accepted 6 June 2025, Available online 10 June 2025.

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Handling Editor: Medical Sociology Office
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Highlights​

  • •
    Biopsychosocial services offer valuable and holistic care
  • •
    Experiential evidence indicates that improvement/recovery is possible
  • •
    Chronicity rhetoric arises from Biomedical Research and Welfare Benefits systems
  • •
    Chronicity rhetoric inhibits biopsychosocial healing work
  • •
    Systems-level intervention is needed to roll out effective biopsychosocial services

Abstract​

Fibromyalgia is a leading cause of disability in the UK and worldwide, but is difficult to diagnose and treat due to unclear pathogenesis and diverse and fluctuating symptoms.

Although various treatment modalities are recommended, no treatments have been proven to effect sustainable improvement or recovery, and patients are typically dissatisfied with their care.

Increasingly, biopsychosocial services are being developed, that aim to take a multifaceted, holistic approach.

In this paper, we draw on a qualitative, ethnographic study of biopsychosocial services in the UK (including 59 interviews, 200 hours observation, document review, and stakeholder workshops), that are providing new and promising forms of support. Drawing on Smith’s Sociology for People as our analytic framework, we explore the work that is undertaken in these services.

We discover chronicity rhetoric that interrupts practitioners’ and patients’ efforts to promote healing and recovery.

We show that chronicity rhetoric is produced and reinforced through Biomedical Research and Welfare Benefits systems.

Our findings are likely to have wider applicability to services for other difficult-to-treat conditions that are having increasingly problematic impacts on health, wellbeing and economic productivity worldwide (e.g., chronic pain, Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME)).
 
Four of the authors are also authors of this study, which found CBT had no effect on whether people developed chronic pain, but the authors claimed efficacy and success anyway.

Hutan

Post in thread 'Maintaining musculoskeletal health using a behavioural therapy approach: a population-based rct, (the MAmMOTH Study), 2021, Macfarlane et al'

Argh. Mammoth Study - doesn't that sound offensive?

Short story: So they did the study, at that ridiculously great (mammoth) expense, found it didn't work, but of course claimed success anyway. When will the madness stop?

We don't seem to have a thread on it yet:

Maintaining musculoskeletal health using a behavioural therapy approach: a population-based randomised controlled trial (the MAmMOTH Study)
https://ard.bmj.com/content/80/7/903
  1. http://orcid.org/0000-0003-2322-3314Gary J Macfarlane1,
  2. Marcus Beasley1,
  3. Neil Scott2,
  4. Huey...
Click to expand...
  • Like
 
Enshittification in action. What is there even to say about drivel like this? It's like doing a simple search and replace to swap "chronic" for "temporary" and asserting that it'll do the trick. And it all pretends like this is some new idea, rather than the set of junk beliefs that have blocked all progress.

The parallels to politics, where the victims of violence are vilified for resisting violence, by those enabling it, are just too much. It has complete disregard, almost contempt, for reality, what is happening, what has been done, and the outcomes it has created.
 
I downloaded this paper a few days ago but have only just got around to looking at it - it is unintentionally very revealing regarding the lack of evidence for BPS services.

1/ The authors relate that, in 2023, an MEA complaint to the Advertising Standards Authority regarding a programme known as the "Chrysalis Effect" was upheld; this "service", offered on the NHS, was part of the authors' "research", and the authors describe how the NHS reacted to this:

The ASA complaint was upheld in September 2023, with the ASA determining that the service “should hold scientific evidence in support of the claims that their programme could aid the recovery” ... the ASA ruling led NHS commissioners to demand substantial changes ... the developers have withdrawn the programme for NHS patients.

The authors of this paper, however, think that "a disproportionate and linear focus on interventional procedure and “outcomes” obscures the work of patients, generating widespread conflation of clinical trial evidence with the value that can be obtained from biopsychosocial care". And this was just blatant patient-blaming:
Clinical trials cannot account for, or control for, such diverse social challenges or the individual neurobiology that may be involved in addressing them. In practice, trials of biopsychosocial models of care may not demonstrate improved outcomes, not because the interventions (care practices) involved are unfounded (non-evidence-based), but because patients do not have the social or psychological resources to maximise benefit from them.
Click to expand...
2/ One of the authors' BPS informants noted that the MEA focusses on the chronicity ("The ME Association [have a newsletter and] they put obituaries in there. It’s all about the suffering.").

3/ The authors note that establishing evidence for BPS services is difficult - difficulties "which are exacerbated as a result of patients' reluctance to allow improved health outcomes to be formally documented", which they link to patients' need for evidence to support welfare benefit claims. (The idea that patients may appear enthusiastic in a session with a therapist but that the intervention was useless did not, it seems, occur to them.)

4/ This quote, from another one of the authors' BPS service "informants", was also breathtaking:
Fibromyalgia is being designated the label of a formally recognised disability, so there’s celebration in the camp now because it means that if they get that diagnosis, then they’ve got guaranteed benefits. That’s what we’re up against all the time.
Click to expand...
The authors appear to assume a priori that BPS approaches are, in fact, engaging in "healing work" which is inhibited by biomedical research & welfare benefits. Their "informants" also talk about perfectionism and other age-old stigmatising tropes. The authors suggest inter alia that "health service managers could rethink their use of evidence" (presumably to favour BPS interventions despite the lack of evidence for efficacy).

This "research" was funded by Versus Arthritis and took place with the assistance of Fibromyalgia Action UK and three named "patient partners". It does not reflect well on either organisation.
 
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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.
 
Oh dearie me. The dirty washing is not only out in public, it is all over the pavement.
It makes John Cleese's paleontologist, whose dinosaur theory was all her own, look smart.

This really is pitiful.

Ernest Choy was once regarded as a bright young academic rheumatologist.
How are the mighty fallen.

As for Versus Arthritis. Hide your faces in shame, guys.
 
This is what PACFiND was supposed to do:
PAtient-centred Care for Fibromyalgia: New pathway Design (PACFiND)
Click to expand...
Fibromyalgia is a common condition with symptoms of pain, fatigue and sleep disturbance. There is not much evidence on the best way to organise health services for fibromyalgia. Patients are dissatisfied with current services and believe no-one takes responsibility. This project aims to improve healthcare services for patients with fibromyalgia. The hope is to provide timely diagnosis which currently takes many years. We also hope to ensure everyone has access to effective treatments, and this will lead to better outcomes.

We will gather information from patients about their current healthcare and work with health professionals to understand how services are organised. We will then identify what better care for patients with fibromyalgia looks like.

By the end of the study we will have developed a new model of care for people with fibromyalgia. The model will prioritise what people with fibromyalgia think is important. It will be ensure better outcomes for patients. We will develop a plan for how the service can be put in place to ensure higher levels of patient satisfaction across the country.
Click to expand...
In a previous paper they asked the patients about what they wanted:
The most preferred treatment was Medication, followed by Physical Therapy, with the least preferred being Talking Therapy.
Click to expand...
But they go on to say that patients might not know what’s best for them.
In the limitations:
Third, it is possible that patients prefer characteristics of a model of care that are not supported by existing evidence.
Click to expand...
When asked for their reasoning, patients who chose Medication often felt they alleviated a specific symptom such as pain or lack of sleep. In addition, they tended to have had negative experiences with Talking and Physical Therapy, to the extent that they doubted their effectiveness. Yet however, there appears strong evidence for both therapies, with a meta-analysis from 14 RCTs of telerehabilitation demonstrating statistically significant improvements in fibromyalgia symptoms, pain intensity, pain catastrophising, depression and quality of life [27]. A potential explanation for the disconnect between preference and perceived lack of effect of Talking and Physical Therapy is that, for some patients, Medication was viewed as a precursor to other treatments, chosen because it was felt to have a quicker effect than the other two options.
Click to expand...
The whole thing is a charade. It’s rotten to the core.
 
patients [...] tended to have had negative experiences with Talking and Physical Therapy, to the extent that they doubted their effectiveness. Yet however, there appears strong evidence for both therapies, with a meta-analysis from 14 RCTs of telerehabilitation demonstrating statistically significant improvements...
Click to expand...

[Principal Skinner meme] "Could our evidence be so low-quality? No, it's the patients who are wrong."
 
Utsikt said:
The whole thing is a charade. It’s rotten to the core.
Click to expand...

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.

I am thinking that dear old Graham would have done a good video on this. How to sell patients pumpkins on the basis that ethnographically they can be considered rhetorical gilded coaches.
 
Nightsong said:
I downloaded this paper a few days ago but have only just got around to looking at it - it is unintentionally very revealing regarding the lack of evidence for BPS services.

1/ The authors relate that, in 2023, an MEA complaint to the Advertising Standards Authority regarding a programme known as the "Chrysalis Effect" was upheld; this "service", offered on the NHS, was part of the authors' "research", and the authors describe how the NHS reacted to this:

The ASA complaint was upheld in September 2023, with the ASA determining that the service “should hold scientific evidence in support of the claims that their programme could aid the recovery” ... the ASA ruling led NHS commissioners to demand substantial changes ... the developers have withdrawn the programme for NHS patients.

The authors of this paper, however, think that "a disproportionate and linear focus on interventional procedure and “outcomes” obscures the work of patients, generating widespread conflation of clinical trial evidence with the value that can be obtained from biopsychosocial care". And this was just blatant patient-blaming:

2/ One of the authors' BPS informants noted that the MEA focusses on the chronicity ("The ME Association [have a newsletter and] they put obituaries in there. It’s all about the suffering.").

3/ The authors note that establishing evidence for BPS services is difficult - difficulties "which are exacerbated as a result of patients' reluctance to allow improved health outcomes to be formally documented", which they link to patients' need for evidence to support welfare benefit claims. (The idea that patients may appear enthusiastic in a session with a therapist but that the intervention was useless did not, it seems, occur to them.)

4/ This quote, from another one of the authors' BPS service "informants", was also breathtaking:

The authors appear to assume a priori that BPS approaches are, in fact, engaging in "healing work" which is inhibited by biomedical research & welfare benefits. Their "informants" also talk about perfectionism and other age-old stigmatising tropes. The authors suggest inter alia that "health service managers could rethink their use of evidence" (presumably to favour BPS interventions despite the lack of evidence for efficacy).

This "research" was funded by Versus Arthritis and took place with the assistance of Fibromyalgia Action UK and three named "patient partners". It does not reflect well on either organisation.
Click to expand...
That's a +1 on the old "it's worse in context, and the more context you add, the worse it is".
 
...with a meta-analysis from 14 RCTs of telerehabilitation demonstrating statistically significant improvements...

But not clinically significant?

And on what outcome measures?
 
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