Spotlight on ME/CFS: Who is lobbying whom? Part one

I have already written a little on some of the ME/CFS-related academic-state exchanges that can be found in The National Archives, data from which is made available on Valerie Eliot Smith’s excellent blogsite - see here and here for access to files. (Valerie is a person with ME and a UK barrister who used the Freedom of Information Act to release data pertaining to ME/CFS).

By ‘academic-state’, I mean the association between the UK government and certain actors within academia, largely but not exclusively psychiatry. These alliances have been further bolstered by comrades within the disability insurance industry, creating a multi-faceted power structure that has constructed a highly persuasive story about a psychosocial entity by the name of ‘CFS’. At least, highly persuasive, if eminence-based propaganda is your bag.

My previous writings on these alliances can be found here, here, here and here, inspired largely through a critical psychology and disability studies lens. [Edit 8/10/22: I have also shared a preprint with a detailed discussion of some of these alliances within the broader political context, which includes copies of some of the original documentation referred to here]. Valerie Eliot Smith has also discussed facets of these alliances on her blogsite. In this blogpost, I’m going to relay some of The National Archives data relating to what might be considered an academic lobbying of the UK government – largely the Department of Work and Pensions (DWP) - on the subject of ME/CFS.

Since I cannot offer hyperlinks to each individual communication referenced here (the two data pdfs on Valerie’s blogsite each contain hundreds of scanned documents), I will add references to the pieces I discuss at the end of this post. Although I will use the term DWP throughout for simplicity, this department was called the Department of Social Security until 2001 when it was replaced by the DWP.

The following account is necessarily selective, and documented exchanges exist before the selected starting point for this particular account.

ME and the DWP Disability Handbook

Let’s start with psychiatrists Simon Wessely and Peter White, who were both most unhappy at the suggestion, back in 1993, of a possible re-positioning of ME as a discrete neurological condition within the context of UK government health and social policy. (Maybe we should say re-repositioning, since ME was recognised as a neurological condition in 1969 by the World Health Organization, before two other psychiatrists, McEvedy and Beard, re-framed it as hysteria). The health and social policy issue concerned the then upcoming revised chapter on ME/CFS in the DWP Disability Handbook, a guide for non‐medical decision‐makers regarding eligibility for Disability Living Allowance (which would later be phased out as part of the 2012 Reform Act and gradually replaced by Personal Independence Payment).

In a nutshell, the handbook chapter looked set to position ME as a separate clinical entity to CFS, where ME would be recognised as neurological (as opposed to psychosocial or psychiatric). Further, the chapter looked set to emphasise that ME could result in severe and progressive disablement.

The implications of this for the UK government, for psychiatry and the disability insurance industry are profound: ME would be no longer be within the reach of psychiatry and their psychosocial ‘treatments’, whilst the UK government and insurance industry would be faced with increased costs in the form of long-term benefits and private income protection respectively (see here for a summary of the political backdrop).

The UK ME Association had announced the provisions of this revised chapter to their members in autumn 1993, including in the form of a leaflet, prior to its official publication. This had apparently caused dismay in some quarters, including on Wessely’s part.

Wessely’s letter to Aylward, 1st October 1993 (Wessely, 1993)

Wessely wrote to express his disgruntlement on this matter to Mansel Aylward, one of the authors of the original Disability Handbook and involved in its revision, who would also enjoy a distinguished career at the DWP as Chief Medical Officer, Medical Director and Chief Scientist. (It should also be noted that Wessely and Aylward had engaged in prior exchanges regarding the first version of the Disability Handbook in 1992, which are not documented here).

In an October 1993 letter to Aylward, Wessely encloses the ME Association’s leaflet, and argues that the decision to position ME as neurological is underpinned with very little empirical support. Instead, Wessely suggests that: "this decision represents the triumph of an effective lobby over scientific evidence" (note the beginning of the ‘ME lobby’ narrative). Wessely then suggests that if ME was to be considered neurological in origin, he will campaign for schizophrenia and manic depression (now usually known as bipolar disorder) to be considered similarly. He goes on:

"I also feel that this decision, if it has been made, reflects an undesirable stigmatisation of psychiatric disorders. 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.”

Here, the ‘anti-psychiatry’ trope that figures in some of Wessely’s writings can be discerned. This trope, unsurprisingly given the links between Wessely and the Science Media Centre - with Wessely variously serving as science advisor and trustee - has found its way into the UK press (see here and here).

Here too, a now common psychosocial narrative, that of a neurological (biological) positioning of ME/CFS reflecting mental health stigma, is also evident. Wessely’s early work on ME/CFS – notably where he attempts to draw parallels to neurasthenia – is spattered with suggestions that people with ME/CFS seek a biological understanding of their illness as a means to escape the stigma of mental health. That people with ME/CFS might seek a biological understanding of ME/CFS because there is a biological basis to the condition, and because psychosocial framing might lead to harmful ‘treatment’, does not seem to occur to Wessely.

Finally, Wessely writes that Aylward’s department (the DWP, then DSS) is sending out a “most unfortunate message” that “colludes with the erroneous belief that this is a severe disorder of neurological functioning” and goes on to caution Aylward of the repercussions of considering ME as a disability: "I cannot believe that is the intention of the Department, if only on grounds of cost!" This cost is clarified as the “ever increasing stream of claims for permanent benefits in people who might otherwise have had a chance of recovery”. Since this purported recovery would be positioned as a result of interventions that Wessely has spent much of his career developing, considering ME (or ME/CFS) as a severe and permanent form of impairment would indubitably also cost Wessely’s career dearly. Little wonder Wessely also demonstrates concern that a neurological understanding of ME (or ME/CFS) “will discourage any sensible efforts at rehabilitation.”

It is hard not to read this letter as a form of lobbying. Wessely’s assertion that he will campaign if he does not get his way, his use of emotive language, metaphor and appeal to scientific legitimacy ("the triumph of an effective lobby over scientific evidence”), alongside a rather rhetorical drawing of Aylward’s conclusion for him ("I cannot believe that is the intention of the Department”) demonstrate Wessely’s ability for persuasive communication, if not activism. It is therefore interesting that Wessely and chums have apparently been so invested in constructing or reinforcing the ‘lobby-activist-militant’ trope about patients (see here, here and here).

Interlude

The day after the date of Wessely’s letter to Aylward, Dr Charles Shepherd of the ME Association had a letter published in the BMJ (British Medical Journal). The letter, among other things, reiterated the ME Association’s announcement to their members that ME would be conceptualised as a neurological condition in the upcoming Disability Handbook (imagine the level of Wessely’s disgruntlement at this point).

Aylward – who was presumably already pretty impressed by Wessely’s persuasiveness - and Professor Rodney Grahame, then Chairman of the Disability Living Allowance Advisory Board (DLAAB), duly wrote to the BMJ to express their dismay that Dr Shepherd would announce the outcome of the revised chapter whilst it was still a provisional draft. In the letter, published 23 October 1993, Grahame and Aylward appear to try to smooth over the debacle by stating:

“It [handbook chapter] will likely conclude that ME is a separate entity within the group of disorders encompassed by the Chronic Fatigue syndromes, and that some affected people remain disabled, make little or no progress, or even deteriorate over time. However, the revised chapter will also provide information about the majority of people affected by ME in whom disablement is neither severe nor permanent”. (Grahame & Aylward, 1993)

This prognostic suggestion could well be construed as extremely optimistic; one systematic review suggested that for 14 studies of CFS the median full recovery rate was 5%. On the other hand, the acceptance that some people remain disabled or even deteriorate over time could well be argued to be an improvement over the dominant clinical standpoint today. However, it would seem that this ‘compromise’ positioning was not good enough for some, including Peter White. We’ll revisit that shortly. First, this post turns briefly to Aylward’s response to Wessely’s letter.

Aylward’s response to Wessely, 13th October 1993 (Aylward, 1993)

Aylward thanks Wessely for his “welcome letter”, which he describes as an “alternative view to those which have bombarded me, my colleagues in the Department and members of the Disability Living Allowance Advisory Board (DLAAB) in the past couple of years”. (Some of these ‘bombardments’ are documented in The National Archives data and consist of disabled people with ME and their allies asking for a more accurate and less stigmatising representation of their illness in official documentation).

Aylward, seemingly very keen to demonstrate his alliance with Wessely, encloses a copy of the letter by Dr Charles Shepherd published in the BMJ, along with the response from Aylward and Grahame, reiterating his “profound dismay and disappointment” on reading Shepherd’s “inaccurate and unauthorized disclosure” of provisional components of the Handbook chapter.

Aylward then turns his attention to the ME Association’s leaflet that Wessely enclosed in his letter, commenting: “That disturbing leaflet is a glowing expression of what the lobby would like to be the truth, rather than what is the truth.” (Note Aylward’s reiteration of Wessely’s use of ‘lobby’, which would also later be used by psychiatrist Michael Sharpe in his Unum writings that I have discussed here). Aylward assures Wessely that the DLAAB has not yet reached a decision on the final content of the chapter, before inviting Wessely to a plenary session of the DLAAB on 2nd November. Aylward adds that Professor Thomas of the Royal Free Hospital will be giving a talk, and that this talk will “assist the DLAAB in its deliberations on the final text of the chapter concerned with ME”.

This was likely an invitation Wessely could not afford to decline, and the plenary will be documented in the second part of the blogpost series. In the remainder of this post, attention is turned to Peter White’s response to the DWP Disability Handbook debacle.

White’s letter to Aylward, 10th November 1993 (White, 1993)

As previously noted, White had clearly read the letter by Aylward and Grahame in the BMJ. White thus wrote to Aylward to express his concern, principally vis-à-vis the planned separation of ME from CFS in the Disability Handbook. He begins by emphasising that he has been studying post-infectious fatigue states for nine years and that, following his work and his reading of "the world literature”, there is no consensus that ME and CFS are separate entities. He then suggests that "separating the two conditions may enhance disability”. White elaborates on this:

"The reason for this is that those who believe in the separate existence of “ME” believe this is a totally physical condition, probably related to immune dysfunction or persistent viral infection, for which no treatment is available. On the contrary, I think the present evidence suggests that the chronic fatigue syndrome is a genuine discrete syndrome and treatments and rehabilitation programmes are available which address both the physical and psychological factors that maintain this syndrome.”

Here, the die appears to be cast for the future of ME. White plays down the case for persistent or post viral infection complications in ME, whilst merging ME into the psychosocial narrative of ‘CFS’. In doing this, the neurological entity of ME, as recognised by the World Health Organisation, is erased. The ‘treatments and rehabilitation programmes’ are cognitive behavioural therapy and graded exercise therapy, which White has helped to develop.

Concluding remarks

White’s appeal to the application of cognitive behavioural approaches for ‘CFS’ is interesting in view of other data from The National Archives. In the minutes of a May 1992 ‘CFS’ symposium, White’s colleague and fellow psychiatrist Michael Sharpe reportedly admits that there is, at that time, no theoretical basis for cognitive behavioural therapy as applied to CFS (CIBA, 1992). Perhaps all had become clear in the intervening 18 months? Or maybe this is an early example of how eminent academics in the field of ME/CFS may construct theory – and data – to fit their personal biases and professional and political interests.

The above exchanges suggest that, if indeed a ‘ME lobby’ exists, it is not a lobby of patients but rather consists of psychiatrists keen to peddle their academic wares to the UK government for professional and financial gain. Other academics have been involved in persuading the government to buy into the psychosocial story of ‘CFS’; the second part of this blogpost series will explore that a little further.

Edit 8/10/22: Valerie Eliot Smith very appropriately refers to the 'psychiatric lobby' in her work.

Click here for the second part of this blogpost series which focuses upon the DLAAB plenary session as mentioned above.

References

Aylward, M. (1993, October, 13) [Letter to Simon Wessely]. The National Archives. https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

CIBA (1992). [Minutes of: Chronic fatigue syndrome: CIBA Foundation Symposium 12-14 May 1992]. The National Archives. https://valerieeliotsmith.files.wordpress.com/2015/02/natarchfd234553.pdf

Grahame, R. & Aylward, M. (1993, October 7) [Letter to BMJ editor]. The National Archives. https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

Wessely, S. (1993, October 1) [Letter to Mansel Aylward]. The National Archives. https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

White, P. (1993, November, 10) [Letter to Mansel Aylward]. The National Archives. https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf