• Jo Hunt

Paper summary: On the politics driving the neglect of ME/CFS

The following summary was very kindly published by The ME Global Chronicle (Twitter: @MECentraal) as part of the June 2022 issue.

Last time my writing appeared in The ME Global Chronicle, I wrote about the politics underpinning the biopsychosocial model as it applies to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and so-called ‘medically unexplained symptoms’ (MUS). At that time, I commented that there was very little peer reviewed literature examining the biopsychosocial model within the context of UK welfare reform and associations between certain academics, government officials and actors within the disability insurance industry. In fact, to my knowledge, there was no such literature specifically focusing on ME/CFS and MUS.

I was therefore delighted when, after many years of trying to publish on subjects that mainstream academia would rather ignore, I recently had a paper accepted for publication in a peer reviewed journal - Journal of Critical Psychology, Counselling and Psychotherapy. The paper uses a critical psychology lens to examine the politics, power structures and psychological investments underpinning the (bio)psychosocial construction of ME/CFS.

Before offering a summary of the paper, I briefly define critical psychology. I have written more on critical psychology and how it may be fruitfully applied to neglected chronic illness here and here.

Critical psychology

Critical psychology as a discipline is very different to mainstream psychology; it largely arose as a criticism of mainstream psychology. Among other things, critical psychology argues that psychological concepts and practices can function as sources as power, which means that they can be used in a way that oppresses marginalized groups. The narratives that arise from, or are reinforced by, mainstream psychology can also benefit privileged subjects – notably, subjects who construct those narratives, but also those who readily buy into them. The paper seeks to demonstrate how this is highly relevant to ME/CFS.

The idea that psychological concepts and associated narratives may benefit wider society can be understood through a lens of complicity, where complicity can be understood as individual or collective internalization and re-enactment of unjust practices. Critical psychology is concerned, among other things, with what motivates complicity, which shifts the spotlight away from the psychologization of marginalized groups, and onto the psychopathologies of an oppressive society.

Critical psychology also holds that language can construct as well as reflect reality. A pertinent example of this, mentioned in the paper, is how ME (a neurological disease as defined by the World Health Organization as far back as 1969) has been re-constructed through (bio)psychosocial discourse as ‘CFS’, a purported psychosocial entity that is allegedly amenable to psychological interventions

Finally, critical psychology assumes that seemingly individual phenomena (such as health and illness) cannot be understood without understanding the broader socio-political context in which individuals reside. I cannot think of a better example to support this assumption than that of ME/CFS.

Summary of the paper

The paper argues that the entity by the name of ‘chronic fatigue syndrome’ (CFS), understood as per (bio)psychosocial discourse, can be understood as a political construction, serving the agendas of a network of actors and power structures whose interests coalesce around welfare reform. The paper also contends that dominant discourse around CFS, and by extension, ME/CFS, may serve certain psychological needs of said actors and of society more broadly, which may help to explain the persistence of (bio)psychosocial hegemony. To understand this, it is necessary to understand that the biopsychosocial model, as applied to ME/CFS and so called ‘medically unexplained symptoms’ has political roots.

The biopsychosocial model is typically associated with the work of George Engel, a doctor who sought a more ‘holistic’ alternative to the biomedical model by recognizing and addressing psychological and social influences in health and illness. However, disability studies scholars and activists have pointed out that this model has been used in a highly politicized way in health and social policy in the UK and beyond. The model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection and on-going biomedical care, reducing state expenditure in these areas whilst boosting private sector profits in the disability insurance and rehabilitation industry.

More specifically, in the UK, this psychosocial model has been espoused by an ’academic-state-corporate nexus’, a term that describes associations between certain academic-clinicians with an interest in what they call CFS, government officials and actors within the disability insurance industry. At the centre of this nexus for some time was the Centre for Psychosocial and Disability Research at Cardiff University, for some years sponsored by disability insurance giant Unum and directed by Mansel Aylward, a former official in the Department of Work and Pensions (DWP). Documented exchanges, and growing alliances, exist between Aylward and these academic-clinicians, the latter having worked as consultants to an array of insurance companies, including Unum, whilst also influential in advising on NHS policy.

The Cardiff centre’s papers formed the intellectual framework for UK welfare reform and facilitated disability insurance policy reforms. These papers drew on the pre-existing work of the centre’s honorary professor, Gordon Waddell, in the field of back pain, further melding this work with literature authored by above-mentioned academic-clinicians. In both CFS and back pain, the approach was the same: differentiate ‘subjective complaints’ from ‘objective disease’, claim that ‘illness behaviour’ in the former is driven by ‘maladaptive’ behaviours and cognitions, and develop interventions that target this alleged maladaptive psychology, facilitating return to work. As part of this narrative, both back pain and CFS (and thus by extension, ME/CFS) were positioned as ‘common health problems’, to be distinguished from ‘serious medical conditions’, whereby common health problems were deemed less worthy of biomedical healthcare and social security support. Here, the power of language (discourse) in constituting certain disabled people as not really disabled and thus unworthy of state support is evident.

The marginalization of people with ME/CFS has been facilitated by the complicity of mainstream structures. For example, the UK press has historically bought into (bio)psychosocial discourse and largely misrepresented both ME/CFS and people who live with the condition, with not infrequent implication of deficient moral character. Biases in academic publishing have replicated this dynamic. Further, the publishing trajectory of the revised National Institute for Health and Care Excellence (NICE) ME/CFS guidelines may represent a form of structural complicity, where NICE appeared to bend to pressure from clinical lobbying in delaying publication, and where resistance to the revised guidelines persists. Finally, complicity can be discerned in the collective practices of largely well-meaning clinicians whose training does not equip them for poorly delineated diagnoses and who are likely largely unaware of the political underpinnings of dominant clinical narratives on ME/CFS.

Research suggests that the lack of fit (lack of ‘epistemological congruence’) between clinicians’ explanatory frameworks and clinical presentations of patients with ME/CFS threatens clinicians’ assumed expertise, leading to feelings of frustration, powerlessness, hopelessness, inadequacy and fear. Negative stereotyping and poor treatment of such patients, widely documented in research, may thus be theorized as a clinical defence against medical uncertainty, threatened loss of expert status and associated discomfort. These defences might also explain clinical victim blaming dynamics (clinicians blaming patients for their inability to recover) as can be found in research. That is, clinicians may seek to avoid the discomfort of medical uncertainty, protect their expert positioning and preserve moral value in the face of negative healthcare outcomes by shifting health-related accountability onto patients. Such dynamics may be internalized and reproduced from the broader social arena.

More broadly in society, victim blaming can be discerned in academic-state-corporate narratives around ME/CFS, where blame is shifted onto chronically ill and disabled people, whilst actors within this nexus seek to cultivate expert status and moral legitimacy through claims of being ‘evidence-based’. In a further parallel, clinical framing of ME/CFS as lacking in work ethic and stoicism can be observed in neoliberal government rhetoric regarding ‘undeserving disability’. These dynamics can also be theorized through a lens of scapegoating which can be applied to both clinical encounters and broader societal responses to ME/CFS. In both cases, lack of ‘epistemological congruence’ (lack of fit) between the reality of medically and societally neglected suffering and the preferred explanatory framework – the biomedical world view and a ‘just world’ view respectively - creates discomfort. This discomfort is defended against through blaming and marginalizing people with ME/CFS, denying their suffering, and thus enabling clinicians and society to preserve their worldview.

‘Chronic fatigue syndrome’, as constructed through (bio)psychosocial discourse, may thus represent a medical and societal defence against uncertainty, alongside an attempt to preserve relative privilege and moral legitimacy in the face of social injustice.

Arguments forwarded in the paper bear relevance to other ‘contested’ (politicized and stigmatized) illness. In particular, actors implicated in the marginalization of ME/CFS are now involved in the clinical positioning of sub-groups of the long Covid umbrella where medical uncertainty predominates. Power structures, politics and psychological investment implicated in the marginalization of people with ME/CFS, as discussed here, are likely also implicated in efforts from certain quarters to marginalize and psychologize long Covid.

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