"Wherever power is at work, we should be ready to ask who or what is controlling whom, and why".
Miranda Fricker (2007). ‘Epistemic Injustice: Power and the ethics of knowing’
Content warning: ableism, suicide
Since the publication of the NICE draft on the diagnosis and management of myalgic encephalomyeltis / chronic fatigue syndrome (ME/CFS), the provisions of which have not been to the liking of a number of eminent researchers and clinicians, there appears to be a fairly well orchestrated campaign of stigma and epistemic injustice against people with ME/CFS from certain quarters. I hope to write about this in more detail in another blogpost, but here I want to examine what arguably underpins and explains such stigmatisation, epistemic injustice and broader social injustice to which patients are subjected. Such injustices are not only committed by certain researchers and clinicians, but also by policy makers, governments, the media and mainstream society more broadly. I want to look at the structural dimensions of the biopsychosocial (BPS) model, that is to say, macro-level phenomena.
Peer-review published literature has demonstrated how the BPS model (in ME/CFS and to some extent other chronic illness) manifests and impacts on a micro level (for example, within healthcare encounters) and on a meso level (for example, in terms of healthcare policy) - see examples here, here and here. However, discussion of macro level phenomena (structural factors such as economic policies, corporate interests, legislation and associated institutions) within the field of ME/CFS and so-called ‘medically unexplained symptoms’ are usually relegated to grey literature or personal blogs such as this one. When we consider the power complex that has constructed and reinforces such macro level phenomena, it’s not very surprising that mainstream science and humanities journals have not historically wanted to rock the boat – though things may change with Long Covid.
In writing this, I focus on the situation in the UK, and draw principally from the work of a number of disability activists and scholars: examples of some of this work can be found here, here, here and here.
Although I will focus on ME/CFS throughout, points raised in this blogpost apply to other chronic illness and disability, particularly those that can be shoehorned into the ‘medically unexplained symptoms’ umbrella or ‘contested’ illness category. This is very pertinent for those sub-groups of patients with Long Covid without detectable organ impairment, since biomedical conceptualisation and treatment is currently lacking. There are indications that Long Covid may be subjected to a similar process of politicisation as ME/CFS and I think it important that people with Long Covid are aware of the actors and structures underpinning this process.
Beginnings of a politicised healthcare model
The BPS model in mainstream healthcare literature is typically associated with the thinking of George Engel, a doctor in internal medicine and psychiatry with a psychoanalytical training who sought to address what he considered to be a reductionist, dualistic biomedical model. The BPS model purportedly encourages a more holistic form of healthcare, ostensibly acknowledging psychological and social factors in health and illness alongside biological considerations. However, Engel’s BPS model has been critiqued on various grounds, notably an eclectic freedom and conceptual under-development which means that any pillar can be foregrounded as per the biases of whomever promotes the model. This is a crucial point, because it has allowed the BPS model (as it is applied to disability and chronic illness) to be manipulated to serve political, economic and corporate interests without any empirical underpinning or theoretical coherency. As many disability scholars and disabled people have highlighted, these interests are associated with the work of certain academics within a broader context of government welfare reforms and health insurance industry profiteering. This application of the BPS model has been referred to as the ‘Waddell-Aylward BPS model’ after Professor Sir Mansel Aylward and the late Professor Gordon Waddell, both medics, academics and key architects of the BPS model as it is applied within health and social policy. I will use the term ‘Waddell-Aylward BPS model’ to differentiate from Engel’s original papers, whilst also acknowledging that other academics have contributed to its development.
Foundations of the Waddell-Aylward BPS model
The Waddell-Aylward BPS model appears to have its origins in Waddell’s thinking on chronic back pain; Waddell was an orthopaedic surgeon with a particular interest in back pain and related disability. Waddell suggested that back pain should not cause long term disability, that too much rest was harmful, and that a rehabilitative approach (notably with ‘controlled exercises’) was necessary and sufficient to facilitate recovery and return to work. Waddell also distinguished between what he considered an illness (a psychosocial entity) and a disease (a biomedical entity), considering back pain to be the former. Parallels to the BPS model of chronic illness and disability (including, notably, of ME/CFS), can already be observed. However, the model was largely developed through the work of the Centre for Psychosocial Research at Cardiff University, established in 2004, where both Waddell and Aylward were key academics: Aylward serving as director and Waddell as honorary professor. The papers produced by the Cardiff centre (see here, here and here for examples) provided an academic framework, and therefore purported justification, for the UK government’s welfare reforms and also helped reinforce a reform of health insurance policy towards disabled people. By reform, I mean a policy of denying disabled and chronically ill people the financial support necessary to live maximally independent, dignified lives whilst those who drive said reform benefit politically, financially and professionally.
It is thus not coincidental that the Cardiff centre was sponsored for some years by US insurance company Unum (then, Unum Provident) and had associations with the UK government and other entities involved in welfare reform. For example, prior to taking up his post as director of the Cardiff centre in 2004 or 2005 (Aylward’s account conflicts with Unum’s on this point), Prof Sir Aylward had enjoyed a distinguished career in the UK DWP (Department of Work and Pensions or DSS as it was for part of Aylward’s office) as Chief Medical Advisor, Medical Director and Chief Scientist, whilst some of the centre’s work was commissioned by the DWP. During Aylward’s time in the DWP he had helped to develop various forms of disability assessment, notably with input from Unum presence, and was also involved in Atos, a French company whose healthcare division was contracted by the DWP to manage disability and fitness to work assessments. These assessments would essentially tighten the eligibility criteria for various disability-related benefits, significantly increasing the refusal rate of new claims and stopping of existing claims. Reform would also make applying for benefits far more stressful, and draconian sanctions now befall anybody who does not – or cannot - ‘follow the rules’. The Work Capability Assessment, the most recent of these assessments, has been associated with enormous psychological distress, destitution and increased suicides amongst chronically ill and disabled people. Predictably, the DWP has repeatedly attempted to minimise such suffering and loss of life, not least through refusing to publish data around it, before being forced to do so under a number of Freedom of Information requests. In 2015, the media reported that more than 80 people per month were dying after being told they were fit to work.
The UK government’s associations with the private health insurance industry, notably Unum, date back to at least the 1990s and arise from common interests: both parties were concerned over the rising cost of supporting chronically ill and disabled people in the form of social security benefits and health insurance pay-outs respectively. In the mid-1990s, Peter Lilley (then Secretary of State for Social Security) drafted in Dr John Lo Cascio (then second vice-president at Unum) to provide consultancy on how to reduce welfare spending through increasing restrictions on benefit claims. A healthcare or social policy model that appeared to provide a scientific basis for reducing welfare expenditure and maximising corporate profits was indubitably a politically and economically attractive prospect. Specifically, conditions that could be framed as psychological or psychosocial in nature, and thus amenable to psychosocial interventions, could be exempted from welfare provision and health insurance pay-outs. To do this whilst maintaining a façade of ethics, the interventions would have to be demonstrated as being evidence-based. An added bonus for Unum was that, if access to social security was further limited by the UK government, those potential claimants who had the means might be persuaded to take out private income protection insurance, which Unum was keen to sell - and equally keen to renege on, when disabled and chronically ill policy holders tried to claim for the financial support they were paying for. In fact, Unum has a well-established history of being a financially and morally corrupt, disability denying - I might say disability hating - corporation (see here and here). The BPS model was thus chosen as a political tool to justify the reduction of welfare expenditure whilst opening up new markets for corporate profiteering.
The Cardiff centre embodies various rather questionable associations that I have previously termed the academia-government-health insurance complex. Jonathan Rutherford, professor of cultural studies at Middlesex University, has referred to this as the academic-state-corporate nexus and since Prof Rutherford’s term is less clunky than my description, I’ll use his term throughout. We’ll come back to this nexus in more detail later. In the next blog, I’ll consider some key constructs of the BPS model, constructs that are largely created for political purposes with a distinct lack of empirical underpinning.
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