“O, what a tangled web we weave when first we practise to deceive!”
Sir Walter Scott. 'Marmion: A Tale of Flodden Field'
*Academic-state-corporate nexus is a term first used (to my knowledge) by Prof Jonathan Rutherford
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 (see blog one and two in this series). 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 (examples here and here) 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”. 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) and 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”. 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. 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 precisely because they are 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. 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 monograph 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 work 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 cognitive behavioural therapy (CBT) and graded exercise therapy (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’ which seemed to draw directly from Wessely’s work on the subject matter – notably on purported parallels between CFS and neurasthenia. 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 academic-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 papers 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 (see here, here and here) and some literature has overinflated the costs of MUS to the NHS. Levels of benefit fraud have also been overinflated to further stigmatise disabled people and justify reform. 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”. 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 in a previous blogpost. 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 academic-state-corporate 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. 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 before Aylward’s move to the Cardiff centre, and Aylward acknowledged that Unum was 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 1995 paper by Aylward and LoCascio 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. Aylward’s involvement in Mediprobe - 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. 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. In one letter to Aylward (dated October 1993), 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”. 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.
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 (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 that 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 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, but walked out part way through the process (along with Prof Trudie Chalder and other BPS advocates), apparently because the report looked set to stray too far from the BPS line. 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 (see here). Prime examples, beyond Aylward’s connections which have been touched upon, include White’s long-standing association with Swiss Re (reinsurance) and 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 2002 Unum Provident brochure, to which both Sharpe and Aylward contribute. It has been highlighted elsewhere, but is worth touching upon.
Prof Sharpe 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 understood 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 patients may be “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 researcher-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, 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 by a large portion of the patient and scientific communities as methodologically and ethically flawed, and despite NICE 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 (not least the editor-in-chief of The Lancet Dr Richard Horton) and not infrequently biased peer review processes. BPS hegemony persists, now with a threat of Long Covid being annexed.
In the next and final blogpost in this series, I will look at the downstream effects of upstream policies and structural corruption.