Mapping the Social Organisation of Neglect in the Case of Fibromyalgia: Using Smith's Sociology for People...Literature Review, 2025, Cupit et al

[Hutan]

Spoiler: Authors

Caroline Cupit, Teresa Finlay, Catherine Pope

Fibromyalgia is a syndrome characterised by persistent unexplained pain and fatigue. People with fibromyalgia report receiving little support to manage symptoms, difficult interactions with healthcare practitioners and stigma associated with this contested condition. In this article, we employ Dorothy E Smith's Sociology for People to undertake a systems-focused literature review from the standpoint of people with fibromyalgia, moving beyond individual subjectivities to map how problems are socially organised. This is a novel application of a Sociology for People which, although previously used to structure research projects, has not previously been reported as a framework for literature review.

Our findings highlight how, within a biomedically orientated healthcare system, practitioners' activities are organised to withdraw support from people with fibromyalgia and characterise problems as “psychological”. Those looking to make service improvements for this patient group need to specifically challenge biomedical systems and ideology, in order to promote alternative models of care. We highlight a Sociology for People as a powerful lens for systems-focused literature review that links frontline experiences with dominant power relations, and provides an alternative to traditional qualitative evidence syntheses. Additionally, the theoretically-grounded and creative use of published literatures is an ethical approach adding value to extant research.


Link: Open access

 

[Hutan]

An output of the PACFIND project looking at service provision for fibromyalgia.

Funding: This research was funded by Versus Arthritis as part of the Patient-centred Care for Fibromyalgia: New pathway Design (PACFiND) project.

I'm interested in this in the light of the Royal College of Physicians work on service provision for Medically Unexplained Symptoms.

Additionally, the theoretically-grounded and creative use of published literatures is an ethical approach adding value to extant research.

Smith's Sociology for People provided a lens for interpreting the research literature. To support the presentation of our analysis, we sought system-level critiques which were congruent with our emerging findings.

I think that means they did a literature review, creatively.


it covers patient dissatisfaction, health professional dissatisfaction, and high use of medical resources. It claims support from patients and health professionals

Specifically, the findings of our review are supported by people with fibromyalgia (and also by health professionals reviewing this manuscript). Throughout the review process, we listened to Patient and Public Involvement and Engagement representatives on the PACFiND steering committee and also paid attention to contemporaneous experiences of people with fibromyalgia (with their permission), through social media support groups.

'Biomedicine' is claimed to provide 'single disease mechanisms and fixing people with (mostly pharmaceutical) interventions'

However, we can see that unexplained symptoms do not sit easily within a biomedical healthcare system, founded as it is on the identification of biological anomalies through testing, followed by protocol-driven (mostly pharmaceutical) care modalities (Davis and Gonzalez 2016).

The threat posed by heartsink patients is not only to practitioners' self-esteem, but to the efficient organisation of the wider healthcare system. Biomedically organised, efficiency-driven systems, compel practitioners to move swiftly from a diagnosis of nothing(Boulton 2019) to doing nothing, for example, withdrawing support—“there's nothing [we] can do about it” (Diver, Avis, and Gupta 2013, 32). However, disengaging from patients with painful and life-limiting symptoms may present challenges to practitioners as we will show in the next section.

 

[Hutan]

There's criticism of the biopsychosocial model too:

When practitioners suggest a psychological cause of illness, alongside biomedical discussions of blood tests and so on, they reinforce a Cartesian split between mental and physical health that is frequently used to “trivialise” patients' illness and classify them as “malingerers” or “hypochondriacs” (Mengshoel et al. 2018, 204–205). These judgements also have gendered overtones, as women make up the majority of fibromyalgia diagnoses (ibid.).

They raise the issue of stigma

Psychological accounts carry the threat of additional stigma (via association with “mental illness” discourses). When psychological accounts are presented as if they were dichotomous to physical accounts, they also give the appearance of challenging the legitimacy of the symptoms themselves.

The problem is dualism, because... people are complex

Segregating the psychological in this way reinforces a mind-body dichotomy and obscures the complex body-mind connections that patients experience:

Using a Sociology for People, we understand the term psychological to function as a “shell term” (Smith 2005, 112) in practitioners' explanations —standing in for people's apparently inappropriate help-seeking behaviour. The framing of illness as psychological overrides more situated knowledge, drawing attention away from the complex interplay of biological, psychological and social components and positioning patients' help-seeking as illegitimate. It buttresses the framing of heartsink patients who cannot be supported by established healthcare systems and is infused with morally laden meanings (e.g. people with fibromyalgia lack self-discipline, cannot cope, are susceptible to somatisation, or cannot control their help-seeking behaviour). The use of this version of psychology (severed from the bio-social) adds a new ruling relation into interactions with patients (J. Rankin and Campbell 2006).

The biopsychosocial model is criticised as creating work for patients to prove that their symptoms are real and that they are worthy of help.

The biopsychosocial model of illness (Engel 1981), as popularised in recent years, appears to recognise both the psychological and social dimensions of health and illness but has been critiqued from its inception. Armstrong (1987, 1213, 1217) asserted, for example, that the model was “grossly medicocentric and sociologically naïve”, in effect positioning social science as “an emasculated, uncritical appendage of a reinvigorated biomedicine”.

Salmon and Hall (2003, 1973) have since shown how the “psycho” and “social” categories have been employed to cement the “traditional dualism of mind and body through the concurrent construction of patients as “agents in managing their disease” (drawing e.g. on notions of patient empowerment). By emphasising a causal relationship between the individual's behaviour and their disease, the biopsychosocial model has often been employed to “locate responsibility for problematic areas of patients' suffering with the patients” (ibid., emphasis added).

Thus, we see that the framing of fibromyalgia as psychological performs a vital function within the social organisation of fibromyalgia care. It transfers responsibility from the healthcare system to patients and, in doing so, creates new work for people with fibromyalgia. In particular, this framing infiltrates people's own understandings of their illness identity, prompting them to question their own experiences of illness—a condition described by Smith (1987) as “bifurcated consciousness”.

It generates the need for patients to prove not only that their symptoms are real (Lempp et al. 2009) but that they themselves are morally worthy of help (i.e. not time-wasting (Madden and Sim 2016) or mentally ill (Smith 1978)). Undermining patients' embodied knowledge (of complex mind-body connections) creates emotional labour (Galvez-Sánchez, Duschek, and Reyes del Paso 2019) on top of extensive other work to manage illness. It is therefore unsurprising that some people resist psychological understandings and pursue more biomedical explanations (Wainwright et al. 2006; Doebl, Macfarlane, and Hollick 2020)—which fit more easily within dominant ruling relations.

 

[Hutan]

I'm inferring that they are proposing a system of care that doesn't tell people that their illness is psychosomatic, reducing the need for the patient to feel they have to prove that they are ill (and all the attempts to get referrals) and reducing the stigma and shame that everyone is worried about.

There's a lot of multidisciplinary and holistic.

Hauser and Fitzcharles (2018, 58) highlight the need for more connected multi-disciplinary support for people with complex conditions such as fibromyalgia, arguing that “whether fibromyalgia is a helpful or unhelpful diagnosis […] depends on the information given to the patient regarding the nature of the disorder, planned treatment strategy, and expected outcome after the initial diagnosis”. They highlight the importance of the mind-body integration in such explanations, emphasising that patients should be informed of the impact of biological, psychological and social factors on the “predisposition, triggering, and perpetuating of fibromyalgia symptoms”.

These findings resonate with developments in neuroscience popularised by writers such as Gabor Maté (Maté and Maté 2022) and with recommendations more than a decade ago that “taking a less medical but more holistic approach when drawing up new diagnostic criteria for fibromyalgia might better match individuals' somatic and psycho-social symptom profile and may result in more effective treatment” (Lempp et al. 2009, 10). Genuinely holistic approaches have been described as the essence of “good care” (Mol 2008) and are particularly important when there are no quick-fix solutions within the established biomedical repertoire (Davis and Gonzalez 2016).

It sort of sounds very nice - being believed, not being blamed. It's close to the type care I think a lot of us want ("we don't know what's wrong with you or how to fix it. that sucks but we will try hard to help you make the best of things". Probably deceptively close. I think they can't help still talk about mind-body connections, which I think might be a recipe for woo. Cheap woo, presumably. Probably with pacing up.

Further work might also study the work of innovators who are managing to provide new models of care for people with fibromyalgia—working around or resisting the dominant systems of knowledge that govern their practice (Talbot 2020; Cupit 2022). Other directions include research into how practitioners are incorporating developments in neuro-physiology into their practice and explanatory mechanisms that connect (or disconnect) mind and body (Gatchel and Neblett 2018; Thibaut 2018; Maung 2019).

 

[Hutan]

I was interested to know what new models of care for people with fibromyalgia might look like, because Catherine Pope, the senior author, seems to be quite influential in UK medicine and health research and so might influencing where the NHS heads next on Medically Unexplained symptoms generally. So had a look at Talbot 2020 and Cupit 2022.


For Talbot 2020, I really have no idea what they are getting at. I wondered if they mixed up a reference.
Institutional Ethnography and the Materiality of Affect: Affective Circuits as Indicators of Other Possibilities

Abstract
Many studies have utilized institutional ethnography (IE) to reveal the social relations that govern how things are put together at the frontline of work, particularly in the public sector and education. The focus has generally been on restrictive practices associated with accountability regimes of new public management. Less analytic attention has been paid, however, to discovering ways in which workers are finding how it can be otherwise. Revisiting the data from a longitudinal study, originally conducted as an IE, provided an opportunity to trace the influence of affect in relation to teachers’ practices. Grounded in empirical data, this article makes a case for the methodological innovation of tracing the work done by affect, as part of an IE, in order to reveal possibilities for resistance.

Yeah, I've got nothing. There's a paywall.



For Cupit 2022
Public health in the making: Dietary innovators and their on-the-job sociology
It seems to be rejecting heath promotion with its patient blaming, and rejecting fat-activism that says you are fine whatever size you are. I think the food industry gets blamed

Deflecting blame/shame from individuals, innovators spotlight the role of the food industry in undermining public understandings of food and physiology, and dietary improvement that is achievable and sustainable

And the answer seems to be more sociologists, as best as I can make out. Which I guess would at least be a change.

Through on-the-job sociology, innovators forge a space to engage patients in collaborative dietary experimentation and improvement. This study highlights the importance of on-the-job sociology in the contemporary knowledge landscape, providing new insights about public health in the making.

 

[Hutan]

Trish's comment on another PACFIND paper seems quite apt:

They seem to have written a lot of words and repeated repeatedly their repeated self congratulatiory statements about their research and new approach...

but nowhere can I see anything about what the treatment actually involves.

See the PACFIND tag (top left) for more PACFIND papers

 

[Jonathan Edwards]

I have only skimmed but it sounds as if this IS the biopsychoscocial model - which of course vigorously denies that one should psychologise, deny the bio part and fall into 'Cartesian dualism'. Standard double or treble speak.

 

[rvallee]

The threat posed by heartsink patients is not only to practitioners' self-esteem, but to the efficient organisation of the wider healthcare system. Biomedically organised, efficiency-driven systems, compel practitioners to move swiftly from a diagnosis of nothing(Boulton 2019) to doing nothing, for example, withdrawing support—“there's nothing [we] can do about it” (Diver, Avis, and Gupta 2013, 32). However, disengaging from patients with painful and life-limiting symptoms may present challenges to practitioners as we will show in the next section.

I literally never want to hear a single thing about this whiny nonsense and I have zero sympathy for it because none of this is anything "compelled by a biomedical model" or anything like that. It's an extremist choice that pretends that they have all the answers when everyone who pretends knows it's completely false because they also face those limits when dealing with diseases they understand. In fact doing something anyway is perfectly compatible with everything else they normally do that actually works, and is obviously the only ethical thing to do.

This is a choice entirely driven by beliefs in psychosomatic ideology, it has zero to do with any imagined conflict with some biomedical model, aka scientific medicine. There is nothing out of this model that even supports doing this as a viable solution. It's dereliction of duty, it actually violates laws and statutes but exemptions have been invented to work around this, all of which is deeply immoral and even shows consciousness of guilt.

I'm not ranting against this paper, it seems interesting and may be useful, but this argument makes me furious every time I see it. Medicine created this problem, has the full capabilities to do better, and has simply chosen to snort the giant pile of psychosomatic cocaine instead. Zero sympathy for this, in fact I find it appalling because while they face annoyance, millions of us have had our lives and everything we hold dear denied to us. This is very close to complaining about all the smoke from the incinerators, good grief the hubris behind this.

 

[rvallee]

It sort of sounds very nice - being believed, not being blamed. It's close to the type care I think a lot of us want ("we don't know what's wrong with you or how to fix it. that sucks but we will try hard to help you make the best of things". Probably deceptively close. I think they can't help still talk about mind-body connections, which I think might be a recipe for woo. Cheap woo, presumably. Probably with pacing up.

It's also exactly what every biopsychosocial promoter would argue they have always done. Because the model is fundamentally dishonest, and as such creates additional problems in that trying to solve this problem becomes impossible because every possible way of doing it ends up being co-opted for opposite purposes, just like psychosomatic ideology keeps appropriating the language we use to turn it against us. They even have the gall, like the BACME model, of appealing to human rights, even as they deny this to us with catastrophic consequences for millions.

The problem is bad faith. Bad faith that only exists because there is an element of faith, in that the biopsychosocial model is just a set of generic beliefs that have no applicability in real life and can be applied any way anyone wants it to. This is far more about culture, history and tradition, the way physicians talk about us among themselves reveals why this is impossible to fix: they are the problem, the culture of medicine drives this, and as with most cultural traditions making life miserable for small people in the way of giant institutions, it can't be fixed, only bypassed. Bypassed by science and technology, which is exactly what drives all biomedical achievements.

This needs science, because science is the only thing that actually works. None of that biopsychosocial nonsense, not the so-called evidence-based medicine. SCIENCE.

 

[rvallee]

Ultimately, reading the excerpts so far makes me think of a biopsychosocial approach without acknowledging it. Which is all very biopsychosocial. It is dishonest, the same old dishonesty that has destroyed millions of lives and will continue to do so until it's stopped. "Let's do the same thing but in a deceitful way that our patients won't know because it's what's best for them" is essentially what this ideology is all about.

Basically there is no biopsychosocial model, there is an infinite number of them, as many as there are practitioners. Which is ironic because one of the features they all share is the idea that every patient is this unique snowflake who needs to be managed psychosocially, which is not true, there are definitely patterns and there will be treatments, while this multiplicity of perspectives is actually what those models are all about: everyone does whatever they want, as long as they call it biopsychosocial, at least among themselves, since with the patients/victims it might be better to be deceitful about it.

Ironically all of this is forbidden by the traditional approach: duty of candor. This ideology is a complete rejection of this principle, although deceit has long been part of health care for all sorts of cultural reasons. But it will never amount to anything in large part because it is fundamentally dishonest. They lie to themselves, to us, to the public, to everyone. And everyone hates it, even them, but they will always keep voting it back in.

Humans are so freaking weird!

 

[rvallee]

Bit random but I find it's relevant to this issue. Today I saw a pre-print of a paper in which the abstract asserted that LC patients want non-pharmaceutical treatments. Not all, but some do. It was a discussion with patients about issues living with LC, expectations and what they want.

And reading the paper, no, they don't say that. What they do say is that they don't care what the solutions are, they just want something that works. What they said is that they are open to anything that works, including psychological therapies, if any of them worked. But they don't, and this is always why they are rejected.

What this shows is that the traditional lie about patients rejecting psychological treatments because we object to the idea of psychological treatments in itself is categorically false, even though it's basically considered a truism. It's long been debunked in fact, and even some of the academics who did studies like this, like Wessely, keep saying it anyway. Because it's considered a truism. Despite being completely false.

There is no way to achieve anything like this. Science requires truth and a fundamentally dishonest way of doing anything has zero chance of solving hard problems. This horrid model is fundamentally dishonest, and it's why it will always fail, will never amount to anything.