• Jo Hunt

Structural dimensions of the biopsychosocial model (full series of blogposts)

Or: The biopsychosocial model, ‘medically unexplained symptoms’ (including ME/CFS) and welfare reform

This extended blogpost simply brings all of the posts in the 'Structural dimensions' series together, additionally referenced in academic style, rather than via hyperlinks. During the couple of years I spent researching for this series, I noted a repeated dynamic of going to retrieve a saved webpage – typically, demonstrating arguably compromising associations or irrefutable evidence of who said what and when – to find the ‘error 404 page not found’ message. Which begs the rather rhetorical question – why would webpages be removed if there wasn’t anything to hide? So, for the sake of completeness, this post includes all the references along with URLs which were active at the time of posting.

Blog one: Beginnings

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’ (p.14)

Since the publication of the NICE draft on the diagnosis and conceptualisation of ME/CFS, the provisions of which have not been to the liking of a number of eminent researchers and clinicians, there appears to be fairly well orchestrated campaign of stigma and epistemic injustice against people with ME/CFS from certain quarters. I will 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 Blease et al., 2017; Geraghty and Blease, 2018; Anderson et al., 2012 for examples). 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 (for example, Jolly, 2012; Stewart, 2013, 2016, 2019; Berger 2014; Shakespeare et al. 2017)

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 (Willis and Chalder, 2021; Sharpe, 2020) 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 (1977), 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 (Ghaemi, 2009). 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. These reforms can in turn be located within a global context, that of ableist, neoliberal politics and the austerity management (structural adjustment) programmes of OECD countries, of which disabled and chronically ill people have bore the brunt (Stewart, 2019b). This application of the BPS model has been referred to as the ‘Waddell-Aylward BPS model’ (Shakespeare et al., 2017) 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, 1987, 1999); 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 and Disability 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 (Waddell & Burton, 2004; Waddell and Aylward, 2005; Waddell and Aylward, 2010) 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 (Rutherford, 2007a). 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 (e.g. Burton & Waddell, 2004) was commissioned by the DWP. During Aylward’s time in the DWP he had helped to develop various forms of disability assessment (Aylward & Sawney, 1999), 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 (Berger, 2014). 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 (WCA), introduced in 2008 to police eligibility for Employment and Support Allowance (ESA) that replaced Incapacity Benefit, has been associated with enormous psychological distress, destitution and increased suicides amongst chronically ill and disabled people (Barr et al., 2016; Stewart, 2018). 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 80 people per month were dying after being told they were fit to work (Ryan, 2015; Butler, 2015). Mo Stewart has written at length about how the WCA is essentially a biopsychosocial model of disability assessment adopted by US insurance giant Unum for assessing insurance claims (Stewart, 2016). Further, Personal Independent Payment (PIP), which replaced Disability Living Allowance (DLA) in 2012 was discussed as being underpinned by ‘the’ biopsychosocial model in the now infamous Lord Freud contribution during the 2012 Welfare Reform debates (Freud, 2012). The more rigid criteria of PIP have reduced benefits for many disabled people; in some cases, the right to accessible cars and other special equipment that offer disabled folk a degree of independent living has been revoked. Newspaper report and qualitative research has demonstrated the harrowing and often profound consequences for disabled people (Ryan, 2016; Saffer et al., 2018).

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 (claims) respectively (Rutherford, 2007a). 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 positioned as psychological or psychosocial in nature (lacking 'objective' biomarkers), and thus amenable to psychosocial interventions, could be exempted from welfare provision and disability insurance pay-outs, effecting a retrenchment of the welfare state whilst boosting profits in the private sector. To do this whilst maintaining a façade of ethics, the interventions would have to be demonstrated as being evidence-based (see: Faulkner, 2016). An added bonus for Unum was that, if access to social security was further limited by the UK government, those potential claimants who could 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 (Williams & Hooper, 2010; Hansard, 1999). 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 (Rutherford, 2007b), 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.

Blog two: Constructs and propaganda

People go to war for ideas, not for evidence.

Prof Gordon Waddell, in: White, P. (ed) (2005). Biopsychosocial medicine: An integrated approach to understanding illness. P.218

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 (a term used in Rutherford, 2007b) for political purposes, with a subsequent attempt to construct (invent) an evidence-base to fit the policy.

‘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” (Waddell & Burton, 2004; Waddell & Aylward, 2010). The referenced 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. Prof Peter White is also cited within the same context, apparently to provide empirical substantiation to the claim that ‘MUS’ are subjective and without objective disease or impairment. In practice, labels such as MUS 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 & Burton, 2004).

Waddell and Aylward argue that workers’ compensation and social security benefits were originally designed for people with “severe medical conditions and permanent impairment” (2010), 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” (Waddell & Aylward, 2010, p.6). 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 Hvidberg et al., 2005; Kingdon et al., 2018), 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” (Waddell & Aylward, 2010, p.21), where psychological factors (notably dysfunctional beliefs and attitudes and fear-avoidance) are posited to influence disability (Waddell & Burton, 2004). 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 (Waddell & Burton, 2004). Receipt of benefits and ‘decisions’ around being unable to work are equally conceptualised as ‘free choices’ (Waddell & Aylward, 2010, p.22). 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 (Picariello et al., 2017) whilst patients’ cognitions and behaviours are framed within the same ‘dysfunctional’ discourse with attendant recommendations of cognitive-behaviourally inspired interventions (White & Wessely, 1996; Knoop et al., 2010). ME/CFS is framed as an illness where, once again, ‘illness’ is considered as a sociocultural phenomenon largely without biological underpinning (Stanley et al., 2002; Sharpe & Greco, 2018). 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 (Bentall et al., 2002; Band et al., 2015), 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 theoretical roots in unfalsifiable Freudian theory and has been adopted by eminence-based medicine to serve the financial, professional, political gains of those who perpetuate it.

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 (Stone, 1984; Shakespeare et al., 2017). 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 (Briant et al., 2013) and towards ME/CFS more specifically (Liddle, 2019). 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 the state-sponsored 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 (Stewart, 2019b), pushing thousands of disabled and chronically ill people into early death through neglect (starvation, untreated disease, destitution) or suicide. As Stewart (2014) 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 at Waddell & Aylward’s work (Shakespeare et al., 2017) and the vast literature produced by proponents of a BPS understanding of ME/CFS (Geraghty et al., 2019). A strong theme is that of conflating correlation and causation, with such conflation being employed to make exaggerated claims. The Cardiff academics, (for example Waddell & Burton, 2004) 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 (Stahl et al., 2014); predictably, in the direction that fits their theoretical model and supports their favoured interventions . As Shakespeare at al. (2017) 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 (2010) refer to “extensive evidence” that financial levels of benefits influence number and duration 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 (Waddell & Aylward, 2010), they claim to have the knowledge to significantly reduce sickness absence and long-term incapacity by citing self-authored work (Waddell & Burton, 2004), when as Shakespeare et al., (2017) point out, the cited work fails to provide an empirical base, conceding that the evidence is in fact lacking in many respects (Waddell & Burton, 2005, p.50). 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’ (RCP, 1996) 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 an illness disappear’, Prof Malcom Hooper and Margaret Williams provides instances of how the authors of this report mis-reference papers to ostensibly strengthen their unsubstantiated position (Hooper & Williams, 2010). 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 blog, 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.

Blog three: Academic-state-corporate nexus

“O, what a tangled web we weave when first we practise to deceive!”

Sir Walter Scott, Marmion: A Tale of Flodden Field

As has been established, the Waddell-Aylward biopsychosocial (BPS) model and the BPS model of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) - and any illness that can be shoehorned into a box of ‘medically unexplained symptoms’ (MUS) - are one and the same. This is largely because ME/CFS (under the preferred name ‘chronic fatigue syndrome’) was used as a blueprint for welfare reform and to serve the interests of the academic-state-corporate nexus. An exceedingly tangled web of connections exists between the Cardiff academics and key proponents of the BPS conceptualisation of ME/CFS, along with their government and health insurance industry associations. This power complex is arguably strengthened through biases within the media, research funding bodies and academic publishing – all areas where certain BPS proponents of ME/CFS have influence. Criticism of the BPS model on theoretical and empirical grounds has been covered in various peer-reviewed published papers (Shakespeare et al., 2017; Geraghty et al., 2019; Geraghty & Blease, 2019) and also through patient narrative, though the latter has historically been subject to epistemic injustice. However, the associations and conflicts of interest that exist within this academic-state-corporate nexus rarely seem to make it through peer-review - I suspect rarely get past initial editorial nod. These connections can arguably be encapsulated through the oft-named Woodstock conference.

The Woodstock nexus

In 2001, a conference was held in Woodstock on the subject of “malingering and illness deception” (see: Rutherford, 2007a; Hooper & Williams, 2010). Significant attendees included Prof Gordon Waddell and Prof Sir Mansel Aylward (Aylward was then medical advisor to the DWP), Prof Peter Halligan (who went on to become associate director at the Unum Psychosocial Research Centre), Prof Derick Wade (formerly of the Oxford centre for Enablement and author of various papers on the BPS model, notably with Halligan). Prof Sir Simon Wessely, Profs Michael Sharpe and Peter White - all with a special interest in ‘chronic fatigue syndrome’ as they like to call it – were also present. Malcolm Wicks (then, Parliamentary Under Secretary of State for Work) and Dr John LoCascio (then, Unum’s second vice-president and medical director at Unum) also attended, along with ‘Wessely School’ psychiatrists Profs Christopher Bass and Anthony David. The meeting was funded by the DWP and its purpose has been summed up by Jonathan Rutherford as none other than “the transformation of the welfare system” (Rutherford, 2007a, p.38). Essentially, the nexus needed to work out how to frame chronically ill and disabled people as morally void scroungers and malingerers with no insight into their own health conditions, so that benefits and insurance pay-outs could be denied, all whilst claiming to be working in best interests of these communities and following the science.

Woodstock isn’t the only meeting of minds that encapsulates the academic-state-corporate nexus, and it’s important to note that associations existed between many of the attendees long before 2001. Other joint works and offerings can be found (see: White, 2005; Halligan & Aylward, 2006). Perhaps Woodstock is often referred to so frequently within the context of this nexus because the associations – and motivations - are so damn obvious. You’d think there would be some attempt to cover up such iniquity, but a typical feature of eminence-based healthcare and social policy is that key actors believe themselves to be beyond criticism because they are, well, eminent. The Woodstock conference also spawned a book, entitled ‘Illness Deception and Malingering’ after the conference itself, co-edited by Prof Peter Halligan with chapters authored by, amongst others, Prof Sharpe, Prof Sir Wessely, Prof Sir Aylward and Dr John LoCascio (Halligan et al., 2003). The publication - which is essentially a collection of narratives about deceitful patients who take advantage of the system and feign disability for secondary gains that represent obstacles to their recovery - also acknowledges the contributions of other Woodstock attendees including Profs Derick Wade, Peter White and Gordon Waddell. The Woodstock connection can also be observed in DWP commissioned and Unum sponsored monoliths that issued out of the Cardiff centre, notably ‘The Scientific and Conceptual Basis of Incapacity Benefits’ which essentially laid down the protocol for the 2007 welfare reform act. This monolith draws on the work of a number of the usual suspects, with a foreword of special acknowledgement for Halligan, Wade, Wessely and White.

ME/CFS as prime trifecta target

It is fair to suggest that ME/CFS would have been high on the agenda during the Woodstock conference. Prior to Woodstock, a narrative around ME/CFS as a psychosocial entity amenable to CBT and GET was being constructed by psychiatrists with an interest in ME/CFS, in some cases in collaboration with actors within the DWP. Aylward in particular seemed very impressed with Wessely’s position on ME/CFS and had given a talk on ‘CFS’ (Aylward, 1998) which seemed to draw directly from Wessely’s work on the subject matter – notably on purported parallels between CFS and neurasthenia (Wessely, 1990; 1997). Also prior to Woodstock, Unum had singled out ME/CFS as a target for aggressive claims policy management. Unum documentation from 1995 shows CFS was referred to as “new banner for neurosis” and states:

“UNUM stands to lose millions if we do not move quickly to address this increasing problem. The subjective nature of CFS leaves us highly exposed to the self-diagnosis of cIaimants, some of whom take advantage of doctors and the entire insurance industry”. (Jackson, 1995).

In the same Unum policy document, Unum conceptualises ME/CFS as a response to social and economic stressors, combined with ‘failure of coping mechanisms’ and ‘entitlement philosophy’, noting that people with ME/CFS tend to understand their illness as a medical condition as opposed to a psychiatric disorder (with the inference that people with ME/CFS lack insight into their health condition). Once again, we see the propaganda of the academia-state-corporate nexus in full swing: Unum’s narrative here is strongly reflective of the UK government’s stance within the context of welfare reform, of the Cardiff centre’s reform monoliths that informed this stance, and of eminent academics who expound the BPS model of ME/CFS.

We also see from Unum’s documentation that money lies at the root of the institutionalised abuses committed against chronically ill and disabled people. Cutting welfare and healthcare expenditure and/or boosting the profits of the insurance industry is a barely concealed theme in BPS-inspired literature (Waddell & Burton, 2004; Chew-Graham et al., 2017; Sharpe, 2002) and some literature has overinflated costs of MUS to the NHS (Tuller, 2019). As Waddell once said: “It is all about money. The main thing was to persuade the treasury that there was an opportunity for keeping costs down, particularly over the longer term” (Waddell cited in White, 2005, p.219). Not just keeping costs down of course, but also making a tidy profit for those involved in keeping costs down. And if keeping costs down means subjecting chronically ill and disabled people to medical neglect, psychological trauma, destitution and early death, then so be it. As previously suggested, a large-scale breach of human rights required mainstream complicity, and such complicity was partly achieved through presenting propaganda as science. Complicity was also achieved through scapegoating of disabled people, and ME/CFS appears to have been considered a prime target.

In the remainder of the blogpost, I will look at a few further examples of the associations that exist within the academic-state-corporate nexus. This is really the tip of the iceberg, but hopefully will serve to demonstrate the inextricably tangled nature of this web of corruption.

State - corporate associations

We’ve already touched the surface of the links between the UK government and Unum (see Stewart, 2015, 2019; Rutherford, 2007a). Professor Sir Mansel Aylward might be considered a prime example of these associations. Aylward is also, in my opinion, a prime example of lack of reflexivity vis-à-vis potential conflicts of interest, or lack of moral compass – or both – that appear to be the prerequisite of entry into the state-corporate-academic inner circle. Aylward moved straight from his role as Medical Director at the DWP to directorship of the Unum funded Cardiff research centre. In fact, according to some sources there may have been an overlap with the appointment of directorship in 2004, before leaving the DWP in 2005 (Select Committee on Work and Pensions, 2006; Black Triangle Campaign, 2012). In any case, it might well be asked why Aylward, having been heavily involved in the UK welfare reform during his time at the DWP, would think it acceptable practice to work for a research centre sponsored by a health insurance giant, and a profoundly fraudulent one at that. Serious issues with Unum’s conduct were common knowledge (Hansard, 1999; Stewart, 2015) before Aylward’s move to the Cardiff centre, and Aylward acknowledged that Unum were sponsoring the centre before his taking up office as director. In fact, Aylward seems to have had his fingers in the profitable pies of the health insurance industry (or associated entities) for quite some time prior to taking the helm at Cardiff.

Aylward was a member of the DSS ‘medical evaluation group’ (established to develop more stringent benefits assessing) from the mid-1990s. LoCascio (then both Unum executive and welfare reform consultant to the UK government) was also a member. The two men certainly seemed to sing from the same song sheets. A paper by Aylward and LoCascio (Aylward & LoCascio, 1995) has all the ingredients of the BPS model we know today. The authors bemoan the increased claims for benefits on grounds of ‘subjective impairments’ (‘chronic fatigue syndrome’ is mentioned and appears to be framed as a psychiatric disorder), suggesting that such impairment is related to secondary gains and somatisation. Predictably, they conclude that psychiatrists and psychologists can play an important role in assessing purported contributing factors to long-term disability. At the same time, both Aylward and LoCascio support a reduced role for NHS physicians in determining long-term disability, a role that is to be taken on by disability medical analysts - to be trained and examined through a diploma created with DWP and Unum influence (See: Dewis, P., 2002). Aylward’s involvement in Mediprobe (Rowe, 1998) - a company set up in the mid-1990s apparently whilst Aylward was on the board of the DSS Benefits Agency Medical Service, with Aylward’s wife listed as director - was likely aimed at finding the ‘right’ medical doctors for such a system. Essentially, the company existed to facilitate civil servant doctors in processing disability claims for insurance companies. In the state social security system, benefits assessors typically are not even medically trained.

State– academia associations

Certain academics are known to have taken up roles as advisors to the UK government – officially and unofficially. Both Sir Prof Simon Wessely and Prof Peter White are known to have had communication in the 1990s with various facets of the DWP or DSS as it was then - specifically the Disability Living Allowance advisory board and Benefits Agency Medical Services in which Aylward was involved (see: The National Archives, uploaded by Smith, 2015). In letters to and from the DWP, both psychiatrists appear to be quite anxious that ME/CFS might be considered a permanent disability in the then upcoming DWP Disability Handbook (Disability Handbook” is a guide for non‐medical decision‐makers with advent of DLA in 1992 – moving control away from GPs). In one letter to Aylward, Wessely states that the “main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry” (Wessely, 1993). This ‘anti-psychiatry’ narrative pervades much BPS discourse around ME/CFS. Wessely adds that the DSS is sending out a “most unfortunate message” that colludes with patients’ erroneous beliefs that they have a severe neurological condition and reminds Aylward of the costs involved in considering ME a severe permanent disability. This cost is presumably one to be borne by the government in supporting disabled people, but such a move would indubitably also cost Wessely’s career dearly. (For clarity, the communication I am referring to here is October 1993. Wessely addresses some of his communications with the UK government on his website, including a letter to Aylward in January 1992; to my knowledge he does not refer to the communication I mention here).

Prof White’s documented communications with Aylward involve White’s suggestion that the separation of ME and CFS would “enhance disability” and that CFS, his preferred term, has “rehabilitative treatments” available (White, 1993). These ‘treatments’ are of course CBT and GET, which Prof White has helped to develop. This conveniently amounts to the erasing of ME as a discrete diagnostic entity, contrary to the WHO’s recognition of ME as a neurological disease back in 1969. It is a matter of public record (Select Committee on Health, 2007) that Prof White has provided consultancy for the UK government (DWP and Department of Health and Social Care) on ME/CFS, having been involved in developing national guidelines on ME/CFS for the Department of Health (NHS Plus, 2006) alongside influencing DWP guidance on ME/CFS for decision-makers. White was also involved in the Chief Medical Officer’s Working Group discussions on ME/CFS from 1998 to 2002 (CFS/ME Working Group (2002), but walked out part way through the process (along with Trudie Chalder and other BPS advocates), apparently because the report looked set to stray too far from the BPS line (see: Hooper & Williams, 2010). The CMO Working Group was part-funded by the Linbury trust, well-known for supporting research by Wessely et al and with established links to the UK government.

Academia – corporate associations

Certain BPS academics, notably in the field of ME/CFS, are known for providing consultancy across a vast array of health insurance companies on the alleged nature of ME/CFS and how it is purportedly amenable to psychosocial interventions developed by said psychiatrists (Select Committee on Health, 2007; Hooper & Williams, 2010). Prime examples, beyond Aylward’s connections which have been touched upon, include Prof White’s long-standing association with Swiss Re (reinsurance) and Prof Sharpe’s association with Unum and Allied Dunbar. It is increasingly difficult to source first-hand documentation on such associations, not least because many URLs which once navigated to first-hand information now navigate to ‘page not found’. It might be asked why webpages would be removed if such associations were not deeply compromising for those involved. However, some remaining sources have been preserved by patients through freeze pages or uploading copies of original documentation online. One particularly interesting source is a Unum Provident brochure (Unum, 2002), to which both Sharpe and Aylward contribute. It has been highlighted elsewhere, but is worth touching upon.

Prof Sharpe (Sharpe, 2002) refers to people with ME/CFS as ‘policy holders’ and reiterates his view on ME/CFS (or CFS as he calls it) as a psychosocial entity to be ‘treated’ with his favoured interventions of CBT and GET. Sharpe also highlights the ‘problem’ that ME/CFS poses to the health insurance industry and health services and rhetorically asks whether they can afford not to address this issue. (Note the parallels with Wessely’s suggestion to Aylward that ME/CFS as a disability risks costing the government a lot of money). Sharpe demonstrates the typical BPS crossover from clinical to moralistic (and empirically unsubstantiated) judgements when he suggests that (some) patients are “driven by anger and the need to explain continuing disability”, proposing the benefits system and potential litigation (inferred secondary gains) as another obstacle to ‘recovery’. Why this dual and conflicting relationship as insurance consultant and scientist-clinician is not considered problematical by Sharpe is unclear. It is somewhat akin to somebody with stakes in the sugar industry being involved in research on nutritional interventions for diabetes, yet there seems to be an almost universal lack of reflexivity within the BPS cabal, and an apparent assumption that conflicts of interest are not a concern for eminent academics.

Insurance industry-academia links within this nexus were spectacularly played down when Prof White led a research team on the PACE trial (White, et al., 2011) part funded by the DWP with Aylward’s assistance, with Wessely and Aylward on the Trial Management Group and Trial Steering Committee respectively. Sharpe was a principal investigator along with Prof Trudie Chalder, who has also done consultancy work for insurance companies. The now infamous trial sought to prove the effectiveness of White et al.’s favoured ‘treatments’ of CBT and GET in the management of ME/CFS. Despite the PACE trial being debunked a large portion of the patient and scientific communities as methodologically and ethically flawed, and despite NICE (2020) assessing the quality of evidence for GET and CBT in managing ME/CFS as low and very low, the BPS ideological brigade (to steal Dr David Tuller’s term) are acting like nothing ever happened. This is facilitated by comrades in high places in academic publishing (see ME Association, 2011) and not infrequently biased peer review processes. BPS hegemony persists, now with a threat of Long Covid being annexed.

In the next blogpost, I will look at the downstream effects of upstream policies and structural corruption.

Blog four: Downstream effects of upstream corruption

“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 analogue of broader chronic illness and disability matters.

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 Geraghty, 2020). Some of the academics also developed a case definition of ME/CFS (or CFS as they like to call it) – Oxford Criteria (Sharpe et al., 1991) - 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 (Godlee, 2011; Hawkes, 2011) and, it would appear, any illness that is poorly understood, poorly delineated and/or poorly treated (Smith, 2002). 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 (RCGP, 2012/2018). 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

The health insurance industry’s influence (notably that of Unum) can also be understood as pervading all levels of the health system. Unum stated that it promotes a “non-medical, enabling model of rehabilitation” (Select Committee on Work and Pensions, 2006), 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 (Waddell & Aylward, 2005); Select Committee on Work and Pensions, 2006; UnumProvident, 2006). 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 (Sharpe et al., 1997). Patient survey data (Oxcatts, 2019) shows 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 (UnumProvident, 2005; Rutherford, 2007a), with CMO at UnumProvident Michael O’Donnell stating “It will not be many years before the rest of medicine follows our lead” (O’Donnell cited in UnumProvident, 2005, p.9).

The influence of Unum’s philosophy of ‘enablement’ – which can also be observed in government discourse (see: Faulkner, 2016) and some of the Cardiff academics’ work (Waddell & Burton, 2004) – 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 RCGP-published version of the 2007 NICE guidelines in the context of the importance of work for health (Turnbull et al., 2007). 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 (Wade, 2020a, 2020b). However, as George Faulkner (2016) 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 (Ryan, 2019). Notably, more positive coverage (O’Neill, 2020) 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 (Liddle, 2019), with ME/CFS advocacy framed as anti-psychiatry (Pemberton, 2011) and extremist (McKie, 2011). 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 work “Magical Medicine: How to make an illness disappear”, he says: “Editors of broadsheet newspapers have confirmed that editorial policy will permit them only to publish items about ME/CFS that come from the SMC” (Hooper and Williams, 2010, p.73). 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 patient abuse (McKie, 2011), and the backlash against journalist George Monbiot’s impactful and sympathetic piece in the Guardian earlier this year (Monbiot, 2021). Given that some research suggests that clinicians may glean some of their ‘information’ about ME/CFS from the media (Chew-Graham et al., 2009) - 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 global financial crisis of 2007/2008 and the UK government’s austerity measures (Briant et al., 2013), with 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 (Rutherford, 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 costs

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 of living with ME/CFS and the stress of the benefits process can cause relapses (Drachler et al., 2009). 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 (Saffer et al., 2018). Healthcare experiences of people with ME/CFS (both from the perspective of patients and clinicians) have been well-documented (see: Anderson et al., 2012): clear cases of negative stereotyping and stigma on the part of clinicians have been demonstrated (Raine et al., 2004; Chew Graham et al., 2009), with concordant felt stigma and associated distress on the side of patients (Dickson et al., 2007).

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 (Jason et al., 2006). 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 – a recent study by Devendorf et al. (2020) 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 (Willis & Chalder, 2021; Miller et al., 2021; Sharpe, 2021). My own experience, as a marginalised woman who has for decades been point-blank refused investigations past 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, 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 (or perhaps trying to convince itself) that this is a form of somatisation that can be cured with some psychoeducation. 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 BPS 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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