“The privileged are simply less likely to believe claims about oppression when they come from those who actually experience it”. Nora Berenstain (2016). ‘Epistemic Exploitation’. Ergo: An Open Access Journal of Philosophy, 3 (22) 569-590
Macro, meso and micro level phenomena are never fully separable and pathways of influence may be both top-down and bottom-up. In this blogpost I will cast an eye on how macro social and economic policies such as welfare reform, and structural phenomena such as entrenched biopsychosocial discourse, can influence downstream healthcare and social policy and practice – alongside broader social opinion - through various channels. Again, I will focus on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) as an example of broader chronic illness and disability matters. Again, issues raised here are pertinent to people with Long Covid.
Academic reach
ME/CFS academics within the academic-state-corporate nexus have worked at macro, meso and micro level within the healthcare system. Beyond their work for the government and health insurance companies, such academics have served as clinicians and clinical researchers as well as NHS advisors, contributors to clinical guidelines and clinical handbooks (see this paper on the influence of psychiatry on the BPS model). Some of the academics also developed a case definition of ME/CFS (or CFS as they like to call it) – Oxford Criteria – that is so broad it risks selecting otherwise healthy individuals who present with the symptom of chronic fatigue or people with primary psychological conditions. Despite a good portion of the scientific community suggesting that Oxford should be permanently retired, it lives on and is typically used in BPS research which then informs practice guidelines. As previously touched upon, these academics have been the driving force in re-framing ME (a WHO-recognised neurological disease) into a psychiatric disorder, albeit one with moralising overtones about patient character. Many of these academics and associates are prolific publishers in well-respected scientific and professional journals (journals whose editorial boards not infrequently include BPS proponents), including the British Medical Journal (BMJ), which arguably informs as well as represents medical opinion. The BMJ has historically appeared content to publish highly stigmatising pieces about people with ME/CFS (see here and here) and, it would appear, any illness that is poorly understood, poorly delineated and/or poorly treated (see here). Finally, BPS proponents have developed a RCGP training package on ME/CFS for healthcare professionals (METRiC) which teaches clinicians to understand ME/CFS as a psychosocial entity. It would seem very reasonable to suggest that the ideology and interests of academics within the nexus have exerted an influence at every level throughout the healthcare system.
The Unum way
Similarly, the health insurance industry’s influence (notably that of Unum) can be understood as pervading all levels of the healthcare and social security system. Unum has stated that it promotes a “non-medical, enabling model of rehabilitation”, where ‘non-medical’ appears to equate to an empirically unsubstantiated psychosocial emphasis and ‘enabling’ approximates coercing. Some of the Psychosocial Research Centre’s work during its Unum sponsorship was in the field of GP education and revision of sick certification; part of the idea was to encourage GPs to get chronically ill and disabled patients back into work with a scheme of GP incentives and/or sanctions. GPs were to be schooled not to collude with patients to reinforce illness behaviour, to emphasise the importance of work and to acknowledge conditionality - that receipt of benefits would only be a possibility once the patient underwent ‘rehabilitative’ interventions. At one point, Job Centre staff were stationed in GP surgeries as part of the Pathways to Work scheme that Mansel Aylward helped to develop. In the field of ME/CFS, some of the usual suspects have suggested that patients should try rehabilitative interventions (interventions that are not empirically supported) before they are considered disabled for benefits or insurance purposes. Patient survey data show that some ME/CFS patients have felt coerced into undertaking CBT and GET, in some cases resulting in harm, and apparently in some cases associated with such conditionality. This raises questions around freely given informed consent and broader clinical ethics. Nevertheless, Unum and the Cardiff academics were hopeful that the Unum way would produce a significant shift in healthcare practice, with CMO at UnumProvident Michael O’Donnell stating “It will not be many years before the rest of medicine follows our lead”.
The influence of Unum’s philosophy of ‘enablement’ – which can also be observed in government discourse and some of the Cardiff academics’ work – shows itself within healthcare in the transition from sick note to fit note and the ascendancy of psychosocial interventions (typically CBT and some form of graded exercise) as primary ‘treatments’ for any chronic illness or disability that can be shoehorned into so-called ‘medically unexplained symptoms’. The 2007 NICE guidelines for the diagnosis and management of ME/CFS (recommending CBT and GET) were underpinned by an implicit narrative of enablement and, perhaps unsurprisingly, were influenced to some degree by the Unum-sponsored Cardiff research centre’s work: one of the centre’s publications was referenced in the guidelines in the context of the importance of work for health. A similar narrative is being extended to Long Covid; for example, Prof Derick Wade (PACE apologist, Woodstock attendee, author of BPS literature and formerly of the Oxford Centre for Enablement) has authored papers and presentations looking at rehabilitation following Covid-19, advocating a BPS formulation of the patient’s case and involving use of graduated exercise and psychosocial therapies. However, as George Faulkner has pointed out, a narrative of enablement which promulgates an unduly positive conceptualisation of ill-health and associated purported path to recovery can actually have the very opposite effect to enablement, disempowering chronically ill and disabled people.
The fourth estate
As noted in a previous blogpost, depriving chronically ill and disabled people of financial support necessary to survive (through refusal of benefits) requires mainstream complicity, and the same could be said for depriving chronically ill and disabled people of adequate medical care. In the case of ME/CFS, mainstream complicity with the institutionalised abuse of patients has been achieved in part through the UK press, which has historically represented people with ME/CFS very poorly, albeit with a few exceptions. Notably, more positive coverage of ME/CFS in a few instances has appeared since the emergence of Long Covid. However, the dominant media narrative of ME/CFS appears to be one of a psychosocial entity with not infrequent suggestion of malingering, with ME/CFS advocacy framed as anti-psychiatry and extremist. Some of the academics in the academic-state-corporate nexus have associations with the Science Media Centre, which exists to provide the UK media with science and health-related news briefings and interviews. In Prof Malcolm Hooper’s and Margaret Williams' work “Magical Medicine: How to make a disease disappear”, they write: “Editors of broadsheet newspapers have confirmed that editorial policy will permit them only to publish items about ME/CFS that come from the SMC”. If this is true, then it would certainly explain much of the (mis)representation of people with ME/CFS in the UK press, the highly biased interviews with BPS proponents who are framed as heroic victims of purported patient extremism, and the backlash against journalist George Monbiot’s impactful and sympathetic piece in The Guardian earlier this year. Given that some research suggests that clinicians may glean some of their ‘information’ about ME/CFS from the media (presumably in the absence of adequate medical education), it might be asked to what extent clinical practice is influenced by a largely biased and misinformed UK press as opposed to sound clinical judgement.
More broadly, media coverage of chronically ill and disabled people has shifted in a stigmatising and scapegoating direction since the financial crisis in 2008 and the UK government’s austerity measures and there are some indications that this has shifted public perception; such scapegoating might go some way to explaining rising rates in disability hate crime. These are important considerations given the economic costs of the pandemic and the possibility of a new wave of austerity – how will these costs be recuperated, who will bear the brunt, and how will this be justified? I rather suspect that disabled and chronically ill people will again be primary targets. Whilst the media has done little to represent disabled people in a respectful and accurate manner, it has also done little to expose some of the drivers behind the stigmatisation of disabled people. Mo Stewart, Independent Disability Studies Researcher, has pointed out that the UK press have been largely silent on Unum’s involvement in welfare reform (which has also impacted on healthcare) since Jonathan Rutherford’s piece for The Guardian in March 2008. It may well be asked whether a similar blanket ban exists for national media discussion of the academic-state-corporate nexus as appears to exist for the accurate and sympathetic coverage of people with ME/CFS – in particular given that these subjects are inextricably linked.
Human cost
The impact of an unaccommodating, if not downright hostile, health and social system on chronically ill and disabled people can be observed in patient survey data and qualitative research. In the case of ME/CFS, patients have suggested that fights with the benefits system adds to the burden of living with ME/CFS and the stress of the benefits process can cause relapses (see here). Broader disability research indicates that disabled and chronically ill people feel dehumanised through the benefit system and that stresses of navigating this system impacts negatively on their physical, psychological and social functioning. Healthcare experiences of people with ME/CFS (both from the perspective of patients and clinicians) have been well-documented: clear cases of negative stereotyping and stigma on the part of clinicians have been demonstrated, with concordant felt stigma and associated distress on the side of patients.
Most disturbing are cases of suicide amongst chronically ill and disabled people which may well be related to the inadequacy and hostility of the health and social security system. As previously noted, welfare reform has been associated with rising rates of suicide amongst disabled people, whilst various studies have suggested an increased suicide rate amongst people with ME/CFS compared to the general population. My experience of working with people with contested and unsupported illness is that suicidal ideation often arises not from the illness itself, or from underlying depression, but from the distress associated with stigma, marginalisation, unacknowledged losses and dehumanisation (see here for research that appears broadly consistent with these observations). It is as yet unclear how the medical profession and broader scientific and political structures will frame Long Covid; however, some sub-groups which lack specific and detectable organ impairment are clearly susceptible to psychologization and politicization, and there are signs that this is already happening (see here, here, here, here).
My own experience, as a marginalised patient who has for decades been point-blank refused investigations beyond routine bloods (despite my symptoms clearly indicating need for further investigation), suggests that some patients are literally left to rot by the healthcare system, and treated like a social pariah by the benefits system. Now mainly confined to bed, I lose consciousness on a daily basis, experience daily episodes of paralysis, go days without sleep in constant pain, stop breathing in my sleep on the occasions I manage some sleep, and am losing my eyesight (amongst a plethora of other disabling symptoms). The NHS is still trying to convince me that this is a form of somatisation that can be cured with some form of psychoeducation and ‘being more active’. Having worked in the NHS, I am sadly aware that my case is not exceptional. Whilst this may seem literally incredible to those who do not have first-hand experience of the abuses occurring within our health and social systems, I think it can be explained through understanding the structural dimensions of the biopsychosocial model, and the incredibly powerful complex of interests that can be defined as the academic-state-corporate nexus.
I would like to thank members of Science for ME for providing feedback on these blogposts. Science for ME is an international, patient-led forum for discussion of all things ME/CFS related, in particular with emphasis on science, support and advocacy.
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