Spotlight on ME/CFS: Who is lobbying whom? Part two
This post is the second of a two-part series looking at academic influence on the UK government’s stance on ME/CFS, during the 1990s. It draws from The National Archives data which can be found on the excellent blogsite of UK barrister and person with ME, Valerie Eliot Smith. As previously noted, Valerie has discussed some of the data on her blog (for an example see here).
A plenary presentation (or two)
On 2 November 1993, a plenary session of the Disability Living Allowance Advisory Board (DLAAB) was held in Richmond House in London. Two academic-clinicians – the then Dr Wessely, and Professor Peter Thomas of the Royal Free Hospital in London – spoke on ME/CFS. The plenary was attended by the then Minister of State, DSS, and Minister for Disabled People Rt Hon Nicholas Scott.
What follows is an account of the minutes from these presentations, to be found in full in The National Archives data (see McGrath, 1993). Therefore, the verbatim extracts represent the wording of the minutes, not the exact words of the academics.
Thomas: mass hysteria and ‘subjective’ fatigue
The Royal Free was the location of a viral outbreak of ME in 1955 (also referred to as Royal Free disease, this outbreak led to the use of the term ME). However, in 1970, two psychiatrists – McEvedy and Beard – re-framed this as mass hysteria, apparently on grounds that most of the sufferers were women, and reportedly without actually seeing the patients involved. (Colin McEvedy was a PhD student with a prior interest in hysteria who used the Royal Free outbreak as the subject of his thesis, Alfred Beard was his tutor, and the findings were published in the BMJ).
Although Peter Thomas was not working at The Royal Free during this time, he seemed to toe the line of the two male psychiatrists. Minutes of the presentations (written by Dr McGrath, DLAAB secretary) record Thomas’ position on the Royal Free outbreak: “There can be no doubt that this epidemic represented mass conversion hysteria”.
Thomas is clearly not a fan of the term ‘ME’, being recorded as stating that the “term means inflammation of the brain and spinal cord, for which there is no evidence whatsoever.” It would also seem that Thomas is in favour of collapsing the entity of ME into the term CFS: “There is no difference between ME and CFS except in the patient’s belief”. He goes on to propose that the fatigue in CFS is "subjective", that is, it is has nothing to do with pathology of the muscles, the neuromuscular junction or of the central nervous system, but rather is related to issues with ‘drive and motivation’. Additionally, he is recorded as saying that mental fatigue is associated with "emotional disorder".
Psychological factors are foregrounded in Thomas’ presentation, with claims that “the high rates of psychological disorder in patients with CFS” largely comprise depression but also include some cases of hypochondriasis and "hysterical conversion syndromes". Accordingly, Thomas’ idea of clinical management involves “identification of the underlying depression and persuasion of the patient to accept this explanation”. This ‘persuading the patient’ continues today, with ‘reattribution training’ for GPs becoming a subject of research (reattribution involves clinicians trying to persuade patients that their illness is psychosocial, to be ‘treated’ with some CBT and exercise rather than requiring medical care).
Thomas also demonstrates the beginnings of the victim blaming narratives we are familiar with today when he suggests that CFS can typically be distinguished from depression via a “lack of self blame or self deprecation.” Here, there is an observable attempt to paint ‘CFS’ (and by extension ME/CFS) as some form of character flaw, an inability to take personal responsibility combined with a sense of self-importance*. Thomas adds that that: “Patients with CFS are desperate to find some reason outside themselves which has caused their symptoms”. This (completely unevidenced) suggestion is highly consistent with Wessely’s early writings on ME/CFS (see here and here). Perhaps these similarities are unsurprising since Thomas and Wessely would go on to co-author academic work in this field.
*In this respect, it should be considered that when people with ME/CFS reject psychosocial framing, this does not represent mental health stigma or fear of such stigma, but rather a very understandable resistance to having their characters attacked.
On the subject of the symptom of myalgia, Thomas suggests that this is “the same as the pain which is suffered by physically unfit people after exercise”, adding that people with ‘CFS’ are not active and therefore experience post-exertional myalgia after quite mild activity. This suggestion sets the stage for the deconditioning hypothesis; Thomas’ support for graded exercise is notably recorded in the minutes. This suggestion is also portentous of a narrative that would be repeatedly reinforced by the academic-state-corporate nexus of alliances: that of essentially healthy people who simply cannot cope with life, thus exaggerate or overly focus on their symptoms and believe themselves to be ill when they are not. Likening the experience of myalgia in ME/CFS to that of somebody who isn’t very athletic after a spot of exercise is evocative of the ‘common health problems’ construct dreamt up by Aylward and chums during their work for the Unum sponsored Cardiff research centre (see here). It is also similar to Wessely’s attempts to draw parallels between neurasthenia and ME/CFS, neurasthenia describing a largely emotional ‘disorder’ that was thought to affect people (typically women) who could no longer cope with the exigencies of modern life.
Importantly, Thomas is recorded as stating: “CFS is NOT related to chronic viral infection, previous claims have been shown to be faulty” (though he does not explain this ‘faultiness’). He adds that that belief in viral persistence or pathology of other biological origin is associated with poor prognosis, thus foreshadowing the ‘dysfunctional illness beliefs’ trope we know today. Accordingly, Thomas carves out a role for and foregrounds what he calls “psychological and socio-cultural influences” in ‘CFS’, whilst downplaying any suggestion of biological influences – the beginnings of now dominant psychosocial discourse on ME/CFS.
Interestingly, Thomas is also recorded as stating that many cases of what was originally diagnosed as ME were discovered, on further investigation, to be – among other diagnoses - brain tumour, myasthenia gravis, hypothyroidism and metabolic neuropathies. Such findings surely underline the importance of comprehensive biomedical investigation before diagnosing ME, or CFS, and my reading of these minutes is that Thomas was actually in support of that. Unfortunately, Wessely and others would turn out to have other ideas: both the 1996 Royal Colleges joint working group report on 'CFS' and papers by the usual suspects recommend limiting investigations to little beyond basic bloodwork. The 2007 NICE guidelines on ME/CFS, and the revised 2021 guidelines, reflect this position.
Wessely: biology is out, illness beliefs are in
Wessely’s contributions are notably shorter than Thomas’; in fact, it is not entirely clear whether Aylward actually invited Wessely to speak, or simply invited him to attend.
Wessely echoes much of Thomas’ views, although Wessely is recorded as stating that there is no evidence of hysterical symptoms (both Wessely and Thomas also rule out malingering and feigning respectively). Wessely reiterates Thomas’ claims of high rates of psychiatric co-morbidity, which according to Wessely are “well in excess of what might be explained as a reaction to physical illness”.
In a further echoing of Thomas, Wessely also downplays biological influences: Wessely rules out primary muscle dysfunction and CNS inflammation, adding: "There is little evidence that it is due to a persistent virus”. He concedes that Epstein Barr Virus may trigger the illness, but that post-viral fatigue should not last longer than 6 months. Dysfunctional illness beliefs are also once again implied: Wessely suggests that, according to (admittedly limited) research, “poor prognosis, and failure to improve, is closely related to illness beliefs of a solely physical origin to symptoms.”
The idea of medical collusion is introduced, with Wessely recorded as suggesting that doctors may perpetuate CFS. He is also recorded as saying that "the greater the disability the more likely is the disorder to be associated with either misdiagnosed psychiatric disorder or poor illness management”. Here, a victim blaming dynamic is evident: patients who cannot recover may be blamed (possibly along with their doctors) for their inability to manage their illness. Moreover, whilst there should never be any blame or shame around mental health diagnoses, Thomas’ contribution demonstrates how mental health is twisted into a character assassination by certain biopsychosocial proponents. Framing patients as having a ‘disorder’ of character is most certainly victim blaming.
Wessely also shows himself to be in favour of an exercise-based approach to ‘treatment’: "[…] the worst thing to do is to tell them to rest. Rehabilitation is essential, exercise is good for these patients, prolonged inactivity causes adverse physical and psychological consequences”.
The suggestion from Wessely that: “Most cases can be expected to improve with time” has endured over the years. For example, the UK NHS Digital webpages on ME/CFS (the likely first stop for many people who want to source ‘trusted’ information on the condition) continued to claim that “Most people with CFS will improve over time, especially with treatment” until some time after the final NICE guidelines were published in October 2021.
Finally, Wessely takes a stance on benefits: “it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse”. This suggestion, that has also endured over time and is now applied to any and every clinically and politically contestable illness, has been discussed elsewhere (see here and here).
The beginnings of a now dominant narrative
What is clear from these minutes is that a new narrative on ‘CFS’ was beginning to take root in the UK, with the help of the UK government, by the early 1990s (academic psychosocial offerings exist before this timepoint). This narrative was likely facilitated by events on the other side of the Atlantic, notably the US CDC’s downplaying of biological pathology in the Lake Tahoe outbreaks in the mid-1980s, followed by their 1988 working case definition report recommending the name ‘CFS’ (see here, here and here for accounts of US politics pertaining to ME/CFS).
The interweaving of social power with unsubstantiated truth claims would become the psychosocial story that we all know today, one that eclipses ME as a neurological entity (as recognised by the World Health Organization in the 1960s), overlooks biological research on the condition, and instead insists that ‘CFS’ (and by extension, ME/CFS), can be ‘treated’ through challenging our ‘dysfunctional’ thoughts, and our ‘maladaptive’ behaviours.
As has been alluded to here and discussed elsewhere, this academic-state constructed story around ME/CFS would be further reinforced by alliances within the disability insurance industry (see here, here, here, and here). Together, the ‘academic-state-corporate’ nexus of alliances have succeeded in hijacking a healthcare model (the biopsychosocial model) and re-writing medical history.
McGrath, M. (1993, November, 2). Chronic Fatigue Syndrome: Summary of the talk given by Professor PK Thomas CBE DSc MD FRCP and Dr S Wessely BM BCh MRCP MRCPsych on 2.11.93. The National Archives. https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf