Trigger warning: suicide, medical neglect, abuse of power
In October last year, I shared two blogposts exploring the academic (chiefly, psychiatric) lobbying of UK government officials on the subject of ME/CFS during the 1990s (see here and here). The data analysed comprised previously redacted letters and minutes of meetings made publicly available by Valerie Eliot Smith, British barrister and person with ME, and concerned the positioning of ME/CFS in the UK government’s Disability Handbook. The academics in question were very keen to convince government officials at the Department of Work and Pensions (DWP)* that ME should not be separated from CFS, that CFS was the preferable term, and that CFS (and by extension, ME) was a largely subjective illness, perpetuated by patients’ ‘maladaptive’ psychology and recoverable via psychosocial health interventions such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
*At the time of these academic-state exchanges, the DWP was called the Department of Social Security; I use DWP throughout for simplicity.
This psychosocial tale has become taken-for-granted ‘reality’ for many clinicians, researchers, benefits assessors, journalists and other social actors who help shape wider societal attitudes toward ME/CFS, despite lack of evidential support. As most of us in the chronic illness communities know only too well, this collection of truth-claims is now being extended to long Covid. In the case of ME/CFS and more broadly in the arena of ‘medically unexplained symptoms’, these truth-claims have had a devastating impact: widespread medical and societal misrepresentation and neglect, resulting in delayed diagnosis or misdiagnosis, social exclusion, early death, and suicide.
It is often difficult for people outside of the ME/CFS community to believe that something with so little evidence could become a taken-for-granted reality, in particular among highly qualified ‘experts’. This often leads to disbelief and dismissal of the testimonies of people living with this condition. However, the outcome of these academic-state exchanges indicates that even the power elite can be lulled into complicity with false narratives – in this case, by other members of the power elite.
In this post, I outline significant UK social policy decisions that followed these exchanges. I also briefly cast an eye on what these academic lobbyists classed as ‘evidence’ in their exchanges with government officials, which suggests that this lobby were either unaware of research findings that contradicted their claims, or that they knew full well, and thought it better to not to mention them. After all, who needs evidence when you exude eminence?
Since what follows will make most sense to those who have already read the previous two posts on this topic, and I appreciate that many readers will not have the spoons to read them, I'll start with a recap.
Revisiting the debate
The academic-state interactions of interest revolved around the positioning of ME and CFS in the ‘Disability Handbook’, the first edition of which was published in 1992. The handbook was a DWP publication, providing eligibility guidance to assessors of the social security benefit Disability Living Allowance (DLA). Therefore, truth-claims made about the nature of ME/CFS in the handbook would carry considerable implications not only for receipt of benefits and other social accommodations, but also likely for clinical and wider societal attitudes toward, and treatment of, people with this condition.
The handbook’s original chapter on ME and CFS (note that the conditions were separated at this point) generated objections from patient organisations who reasonably argued that the relative emphasis on psychological influences could prejudice benefit decisions. The ME Association also campaigned for ME to be removed from a standalone chapter on ‘CFS and ME’ and placed into a chapter on ‘certain neurological disorders’ following World Health Organisation classifications.
Archive data suggest that government officials were largely following recommendations from patient organisations – at least, up until summer 1993 when the DWP issued draft revisions which placed ME (separated from CFS) among ‘certain neurological conditions’. If these revisions had made it to the final draft, the official recognition of ME as a neurological condition, alongside Parkinson’s disease, multiple sclerosis and so on, might have transformed the lives of people with ME, in the UK and potentially beyond.
However, these draft revisions sparked objections from (bio)psychosocial proponents, chiefly from psychiatrists Peter White and Simon Wessely, but also with support from Peter K Thomas at the Royal Free Hospital. The precise nature of these objections was discussed in my previous posts on this topic (also see here and here). Suffice to say, eminent academics were not happy at the prospect of ME being considered a biological disease capable of causing severe impairment and disability: cue much downplaying of the ‘bio’ and overstating of the ‘psychosocial’, with which we are so familiar today. Of particular pertinence, given that an official biomedical framing of ME would reinforce need for biomedical care, alongside eligibility for state benefits and private income protection (disability insurance cover), is that one of Wessely’s concerns was the financial costs of such a move.
Before continuing, it worth noting that lead author of both the first and second edition of the Disability Handbook is Mansel Aylward (recognised by many disabled activists as chief architect of UK welfare state demolition), whilst co-authors included Peter Dewis, member of the DLA Advisory Board (DLAAB) and subsequently Chief Medical Officer at insurance company Unum. (The US corporate giant Unum played a central role both in UK welfare reform as explained here and here, and in the psychosocial framing of ME/CFS and so-called ‘medically unexplained symptoms’, as explained here and here).
The beginnings of eminence-based policy
The UK government's stance on ME/CFS changed quite drastically after these academic-state exchanges. This assertion can be supported by examining the contents of the chapter on ME/CFS in both the first and second editions of the Disability Handbook*.
*References at the end of the post (see Aylward et al., 1992, 1998)
The chapter on ME/CFS in the 2nd edition of the handbook, finally published in 1998, proved to be highly consistent with the (bio)psychosocial party line and in particular with the claims and recommendations made by White, Wessely and Thomas. ME is not positioned among ‘certain neurological conditions’. In fact, ME effectively disappears altogether. That is, whilst the first edition’s chapter was entitled 'Chronic fatigue syndromes and ME', with acknowledgment that ME is a separate clinical entity as far as some researchers are concerned, the second edition’s chapter drops the term ME altogether, carrying the title 'The chronic fatigue syndrome' and containing the erroneous claim that the term CFS had recently “been universally adopted”. This re-writing of the truth conveniently serves to eclipse ME and its associated biomedical narratives from what would become dominant clinical and social discourse.
Additionally, whilst debate over physical and psychological causation of ‘CFS’ is acknowledged in both editions, the revised chapter transpired to be strongly biased toward the eminent academics’ psychological model, with additional recommendation of CBT that is absent in the first edition. The possibility of persistent viral infection and minor damage in the muscles, noted in the first edition but refuted by White, Wessely and Thomas, are absent from the second edition. Furthermore, whilst the first edition notes the debate around graded activity, the second edition follows academic input by recommending it, with the handbook's authors strongly echoing Wessely’s truth-claims to government officials in cautioning that ‘total rest is counterproductive’.
Importantly, and also consistent with the academics’ claims, there is a stronger emphasis on the possibility of recovery in the second edition: whilst severe disablement is acknowledged in a minority of cases, permanent or indefinite disablement is not acknowledged, with a suggestion that severe cases are at least partly psychogenic and certainly treatable. Together, this collection of truth-claims represents the psychosocial tale we know today: that of a ‘subjective’ condition, perpetuated by ‘dysfunctional’ illness beliefs and fear-avoidant behaviours, amenable to psychosocial therapies that just happen to have been developed by those peddling their academic wares to the UK government.
The impact of this emergent new ‘reality’ in terms of social security policy should be clear, especially since the handbook would be used not only in the training and practice of benefits decision-makers, but also in tribunal cases. That is, denial of long-term state benefits and a fattening of the state coffers would duly follow. These truth-claims would also benefit the disability insurance industry (with which Aylward, Dewis, White and others have been involved) by assisting exemption from claims. These changes should be sited within the context of UK welfare reform agendas, which have caused incalculable suffering for disabled and chronically ill communities, and which are inextricably entwined with both the ascendancy of the biopsychosocial paradigm more broadly, and with the interests of (bio)psychosocial proponents of ME/CFS more specifically. Importantly, welfare rhetoric has impacted upon social attitudes towards disabled people, including people with ME/CFS.
It is also noteworthy, yet hardly surprising, that the 2007 NICE guidelines on diagnosis and management of ‘CFS/ME’, influenced by (bio)psychosocial proponents including White, reflect the revised Disability Handbook’s narrative. These clinical guidelines would influence clinical attitudes and determine healthcare provision (or lack thereof) for people with ME/CFS for well over a decade. Moreover, Aylward – who seemed only too keen to drink the (bio)psychosocial Kool-Aid – would go on to help to secure DWP funding for the infamous PACE trial, additionally serving as a Steering Committee member. The impact of the PACE trial in informing clinical and social attitudes toward ME/CFS cannot be understated. Whilst NICE guidance has recently changed, many clinicians’ attitudes have not, with influential psychosocial proponents (including White and Wessely) suggesting that clinicians are not obliged to follow the new guidance.
Before wrapping up, I will briefly consider what apparently passed for ‘evidence’ in the minds of these eminent academic lobbyists during their exchanges with government officials.
Evidence, but not as we know it
When White wrote to Aylward in November 1993 to object to the separation of ME and CFS, he played down any suggestion that ME might be a physical condition related to immune dysfunction or persistent viral infection, and stated that the ‘evidence’ then pointed towards CFS as a discrete entity largely recoverable via ‘rehabilitation programmes’ (CBT and GET). Yet, there was little evidential support for White’s claims at that time.
Whilst limited research suggesting potential effectiveness of CBT existed at this timepoint, we know from the PACE trial that such research, in terms of its theoretical base, methods, overall design and patient harms, is highly problematical (examples here, here, here, and here). Moreover, as previously noted, White’s colleague and fellow psychiatrist Michael Sharpe had already (in 1992) acknowledged the theory behind CBT for ME/CFS to be lacking. On the other hand, limited research indicating possible immune dysfunction and persistent viral infection actually existed at the time of White’s letter (see here, here, here).
In a parallel dynamic, both Wessely and Thomas appeal to the purported ‘evidence’ during their plenary with government officials in November 1993. As noted in previous writing, Wessely rejected a biomedical paradigm for ME/CFS in stating that no evidence existed for muscle dysfunction or central nervous system involvement. Yet, at that timepoint, research indicating a possibility of muscle abnormalities and central nervous system involvement existed (see here, here, and here). Similarly, Thomas’ claim that there was ‘no evidence whatsoever’ for inflammation of the brain and spinal cord can be juxtaposed with (admittedly nascent) research suggesting just that.
Whilst it may reasonably be argued that a few preliminary biomedical studies do not represent ‘evidence’, the eminent academics’ psychosocial narrative was also in its infancy and also lacking solid evidential support. At the very least, the definition of ‘evidence’ applied here can be said to be based on selective attention. More cynical readers might contend it was based on thin air.
In 1999, an article in the British Medical Journal explored alternatives to the ‘evidence based medicine’ ideal that existed in practice. One of the cited alternatives, ‘eminence based medicine’ was described as follows:
“The more senior the colleague, the less importance he or she [sic] placed on the need for anything as mundane as evidence” (Isaacs & Fitzgerald, 1999)
This description neatly encapsulates the very beginnings of (bio)psychosocial dominance in the ME/CFS field, and the concept of eminence based medicine has been duly applied to elucidate the persistence of (bio)psychosocial practices in this arena. However this dynamic is theorised, it is eminently clear (no pun intended) that (bio)psychosocial ascendency is rooted in abuse of power.
Aylward, M., Dewis, P., & Scott, T. (1992). The disability handbook: A handbook on the care needs and mobility requirements likely to arise from various disabilities and chronic illnesses. (1st ed). HMSO.
Aylward, M., Dewis, P., & Henderson, M. (1998). The disability handbook: A handbook on the care needs and mobility requirements likely to arise from various disabilities and chronic illnesses. (2nd ed). HMSO.