“People go to war for ideas, not for evidence.”
Gordon Waddell in: White, P. (ed) (2005). 'Biopsychosocial medicine: An integrated approach to understanding illness'.
Content warning: ableism, suicide, democide
In this blog I will cast an eye on some key constructs within the biopsychosocial (BPS) model of chronic illness and disability. These constructs have quite literally been constructed by the academic-state-corporate nexus (Jonathan Rutherford’s term) for political purposes, with a subsequent attempt to construct (invent) an evidence-base to fit the policy.
(For the previous blog in this series, click here)
‘Common health problems’
The Waddell-Aylward BPS model targets what architects of the model refer to as ‘common health problems’. These are constructed as mental health, musculoskeletal and cardio-respiratory conditions that are “characterised more by symptoms and distress than by consistently demonstrable tissue abnormality” and are thus considered “subjective health complaints” (see here and here - parts of one paper seem to have been copied and pasted into another). Papers produced by the Cardiff centre clarify that ‘common health problems’ are another term for ‘medically unexplained symptoms’ (MUS) or ‘functional somatic syndromes’, notably citing work by Sir Prof Wessely who has led the way in extending psychiatric reach over anything that can be possibly framed as such. In practice, these labels persist even where patients are not biomedically investigated in the first place, making MUS a clinically meaningless yet politically very useful concept. It is noteworthy that ‘chronic fatigue syndrome’ (the BPS term for ME/CFS, which is frequently further reduced to ‘chronic fatigue’) is mentioned in the Cardiff centre’s work within the context of these common health problems, under the rubric of mental health.
Waddell and Aylward argue that workers’ compensation and social security benefits were originally designed for people with “severe medical conditions and permanent impairment”, conditions associated with detectable pathology, whilst common health problems are considered to be “similar in nature and sometimes even in degree to the bodily and mental symptoms experienced at times by most adults of working age”. Let’s just stop and reflect on this. This means that conditions such as ME/CFS, a condition that has been associated with a lower health-related quality of life and/or greater functional impairment than, for example, various cancers, multiple sclerosis, chronic renal failure and stroke (see here and here), that can leave people bedbound and tube-fed, a condition that has killed people, are framed by Waddell and Aylward as similar in nature and degree to symptoms that most working age adults might experience. It could well be argued that this is somewhat akin to comparing HIV/AIDS to a common cold.
Deserving and undeserving sick
According to the Waddell-Aylward BPS model, illness is a behaviour and sociocultural phenomenon, whilst disability as it pertains to common health problems is largely conceptualised within a framework of “conscious choice”, where psychological factors (notably dysfunctional beliefs and attitudes and fear-avoidance) are posited to influence disability. Effort and motivation are expected to lead to recovery, notably through compliance with cognitive-behavioural rehabilitation strategies such as graded exercise and cognitive behavioural therapy. Receipt of benefits and ‘decisions’ around being unable to work are equally conceptualised as "free choices" . Social factors are acknowledged largely as they fit the individualist and neoliberal narrative of agency and free will. That is to say, reinforcement of illness behaviour through ‘colluding’ clinicians and/or family within a culture of entitlement is one of the dominant narratives, yet critically-informed social factors such social disadvantage and discriminatory attitudinal contexts are, conveniently, markedly downplayed. The parallels to the BPS model of ME/CFS as it appears in mainstream literature are clear: the models are one and the same.
According to BPS thinking on ME/CFS, effort and motivation are key in improving health outcomes, whilst patients’ cognitions and behaviours are framed within the same ‘dysfunctional’ discourse with attendant recommendations of cognitive-behaviourally inspired interventions. ME/CFS is framed as an illness where, once again, ‘illness’ is considered as a sociocultural phenomenon largely without biological underpinning. As per the Waddell-Aylward creation, the BPS model of ME/CFS only acknowledges social factors as far they fit an individualist narrative of psychologisation. Receipt of benefits, membership of support groups and ‘over-solicitous’ significant others have at various points been argued to be associated with poorer health outcomes in ME/CFS, thus limiting social influences to purported social reinforcement of ‘aberrant’ psychology. Once again, critically-informed social factors are not mentioned. Again, this is very convenient and serves to shift the spotlight of scrutiny from the model itself, and motivations of its creators, onto patients.
It is important to note that the form of psychologisation promoted by this model goes beyond suggesting that patients have a psychological or mental health condition. Rather, in suggesting that patients are motivated by ‘secondary gains’ (attention, financial benefits, avoidance of work and other obligations etc.) and that conscious choice and free will play a significant role in recovery, the model crosses the line from clinical judgements to moralistic and stigmatising ones. Such judgements also appear to be lacking in rationality: why anybody would choose a quality of life lower than cancer, would gain anything from being forced to bear witness to their slow and painful decline into oblivion, all whilst being treated like a social pariah, is never really explained. Secondary gains (along with much thinking in psychiatry) has its roots in unfalsifiable Freudian theory and has been adopted by eminence-based medicine to serve the (financial, professional, political) gains of those who perpetuate the theory.
The BPS model also creates divisions between ‘serious medical conditions’ (worthy of welfare support and biomedical healthcare) and ‘common health problems’ (unworthy of such), divisions which have been argued by disability scholars to be evocative of the deserving and undeserving poor narrative. According to such divisions, it could well be argued that people with ME/CFS are unjustly framed as the undeserving sick – by the very people who claim to want to help them. The UK press has historically done very little to counter such narratives, towards chronically ill and disabled people more broadly and towards ME/CFS more specifically. In-group out-group dynamics (worthy – unworthy) are also a key ingredient in stigma, discrimination and oppression. Stigma in particular proves a very handy political tool when socially powerful people desire, for their own ends, to commit the most egregious abuses against less socially powerful people – and get away with it.
Eminence-based propaganda
One of the most shocking aspects of this state-sponsored agenda is the lack of evidence-base and lack of theoretical coherency of the BPS model. Independent Disability Studies Researcher Mo Stewart has suggested that UK welfare reforms (in particular the Work Capability Assessment) can be considered a form of democide, pushing thousands of disabled and chronically ill people into early death through neglect (starvation, untreated disease, destitution) or suicide. As Stewart also notes, many more have been plunged into constant fear of having no means to survive and into utter despair, living in conditions which surely must represent a violation of their human rights. In order to guarantee mainstream society’s complicity with such abuses, the UK government needed to present their policies as evidence-based. Eminent academics have played a key role here, abusing their epistemic and social power in presenting what is little more than state-sponsored disability denial as a mix of science and expert opinion.
Much has been written on the limitations of the BPS model, both looking more broadly at Waddell & Aylward’s work and more specifically in the case of ME/CFS. A strong theme is that of conflating correlation and causation, with such conflation being employed to make exaggerated claims. The Cardiff academics, for example, pick out reported associations between unemployment and poor physical and mental health, with the conclusion that the former causes the latter (hence justifying all manner of unethical measures to get people back into work, whether they are capable of work or not). It does not seem to occur to these academics that poor physical and mental health might contribute to unemployment, particularly in a society that does not accommodate chronically ill and disabled people in education, healthcare and employment. In the field of ME/CFS, BPS proponents have repeatedly drawn upon observed associations between variables (e.g. ‘catastrophic’ beliefs and fatigue) such as to infer that one causes the other; predictably, in the direction that fits their theoretical model and supports their favoured interventions. As Shakespeare at al. point out, this has fundamentally changed the BPS model from Engel’s largely descriptive framework to one of alleged causal explanations.
Self-referencing, mis-referencing and selective referencing to aid weak arguments is not uncommon amongst BPS proponents. For example, Waddell and Aylward refer to “extensive evidence” that financial levels of benefits influence the duration and number of claims, supporting this with one reference co-authored by Waddell and Aylward that appears to be specific to back pain. In the same paper, they also claim to have the knowledge to significantly reduce sickness absence and long-term incapacity by citing work co-authored by Waddell, when as Shakespeare et al. point out, the cited work fails to provide an empirical base, conceding that the evidence is in fact lacking in many respects. How the BPS model was extrapolated from low back pain to almost every other health condition conceivable is not entirely clear; it would appear to be largely achieved by Waddell repeatedly citing himself and like-minded colleagues.
In the field of ME/CFS, internationally debunked BPS research is repeatedly referenced by its authors to purportedly demonstrate robust findings of effectiveness of favoured interventions. This continues even in the face of NICE concluding that such research is of low and very low quality, and that these favoured interventions (CBT and GET) should not be offered as clinically proven treatments (GET having been repudiated, CBT to be offered only as a supportive therapy for patients who choose it). Historically, reports which could be expected to have significant impact on healthcare and social policy have been carefully crafted by selective authoring and selective referencing. One example is the 1996 Joint Report of the Royal Colleges of Physicians, Psychiatrists and General Practitioners on ‘CFS’, where it would appear at least half of the authors and over half of the references were strongly biased towards a psychological understanding of ME/CFS. The report, predictably, played down biological underpinnings of ME/CFS, advising against all biomedical investigations but the most basic of blood and urine tests and suggesting that GET and CBT were the most ‘hopeful’ approaches. In ‘Medical Medicine: How to make a disease disappear’, Prof Malcom Hooper and Margaret Williams provide instances of how the authors of this report mis-reference papers to ostensibly strengthen their unsubstantiated position. The above-mentioned examples of eminence-based propaganda are the tip of the iceberg but hopefully serve to make the point.
Finally, strategic use of language (including theoretical constructs) is apparent both in the writings of the Cardiff academics and usual suspects in the psychologisation of ME/CFS. ‘Disability’ takes on a whole new meaning, essentially to mean something that a disabled person chooses or creates with social and financial reinforcement. However, when key actors in this game want to defend their positions or deflect from criticism, they will profess to believe that patients are genuinely disabled. Given that many people do not equate disability with individualist, victim-blaming, psychosocial phenomena as per the BPS model, it is easy to see how such assertions might be mis-construed as coming from a place of benevolence. Likewise, ‘illness’, which is typically used in social sciences to describe the personal lived experience and broader socially situated experience of ill-health - without moralising connotations - is variously redefined as the ‘subjective feeling of being unwell’ or something akin to medically unexplained symptoms, as in 'illness without disease’. The emphasis on patient subjectivity and alleged lack of disease is juxtaposed with the assumed objectivity of expert opinion and so-called evidence base, whereby patient narrative becomes the lowest form of evidence and moralising ‘clinical’ judgements creep in. This mix of self-created, misappropriated, vague and fluid terminology is intentionally obfuscating and may raise issues with validity and replicability in research. An example of this in the field of ME/CFS is the BPS hijacking of the diagnostic entity ME through the creation of ‘CFS’, conflating the two terms through ‘ME/CFS’ (cue numerous conflicting case definitions), then dropping ME (when it suits) to leave CFS or just plain ‘chronic fatigue’. Creating such ambiguity helps to deflect from an underpinning lack of evidence-base. As Waddell suggested, who needs evidence when you have ideas?
In the next blogpost, I will look more closely at the tangled web of professional associations that underpin the state-sanctioned abuse of chronically ill and disabled people. With the emergence of Long Covid, and a strong possibility of a tidal wave of post-viral chronic illness and disability, the motives and actions of the academic-state-corporate nexus should be of great importance to everybody.
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