Toward a critical psychology of ‘medically unexplained symptoms’?
Following a short overview blogpost on critical psychology, in this post I take a few examples from the case of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and ‘medically unexplained symptoms’ (MUS) to demonstrate how critical psychology can be applied in an illuminating, constructive, and potentially transformative manner.
Language shapes reality
Firstly, critical psychology’s interest in social constructionism, in arguing that language constructs as well as reflects reality, is highly relevant to the construction of biopsychosocial narratives around ME/CFS and MUS. Language is more likely to shape mainstream reality when it is entwined with social power, producing dominant discourse. The most fundamental example of this would arguably be the term ‘chronic fatigue syndrome’, which is then often used interchangeably with ‘chronic fatigue’. This label is about as far away from lived reality of ME/CFS as it is possible to get – I’m sure many people with ME/CFS wish their biggest issue was chronic fatigue, as debilitating and distressing as that symptom can be. Yet, CFS tells us nothing about the plethora of symptoms associated with ME/CFS, let alone the burgeoning body of biomedical research suggesting multi-system involvement. CFS only reveals a symptom (chronic fatigue) and an unspecified related syndrome.
Reducing a neurological or multi-system disease to a symptom that most people experience at some time in their life is an effective way of promoting the marginalisation of this patient group. The fact that the term CFS is preferred by certain eminent academics (and also used by actors within the UK government and insurance industry with whom these academics have longstanding associations) invests the term and its connotations with a large degree of social power and therefore credibility. ‘CFS’ therefore takes on a particular meaning which then becomes (mainstream) reality, with other influential mainstream institutions such as the UK press buying into the ‘chronic fatigue’ narrative.
A similar argument could be forwarded regarding the MUS label. This label suggests that a patient’s symptoms have been thoroughly biomedically investigated with ‘nothing abnormal detected’. Yet, most of the people I have worked with or encountered who have this label (in particular where these people happen to be women, Black and people of colour, and/or from poor working class backgrounds) have not had thorough biomedical investigations. Some people have had nothing beyond routine bloodwork. In this regard, ‘medically unexplained symptoms’ is highly misleading - yet it is a politically useful construct. ‘Medically under-investigated symptoms’ or ‘medically under-researched symptoms’ would likely be closer to the truth.
Psy practices as sources of power
The argument within critical psychology that practices and concepts in the psy professions are forms of power, that might empower some social actors whilst oppressing others, is evident in the psychiatry-driven terms CFS and MUS, and their repercussions in terms of medical treatments and social accommodations – or lack of them. Whilst actors involved in developing and promoting alleged psychosocial ‘treatments’ for ME/CFS or MUS (notably, graded exercise therapy and cognitive behavioural therapy) have benefitted in various ways from this agenda (largely professionally, but also financially), the same cannot be said for many people with ME/CFS or MUS. Some people with these debilitating conditions have had their lives obliterated through a combination of harmful yet purported ‘evidence-based’ interventions, lack of biomedical care and lack of wider social support. Here, we see an exemplar of critical psychology’s concern that psy practices may benefit privileged subjects, whilst further marginalising oppressed groups.
The bigger (structural) picture
The recognition within critical psychology that the individual cannot be separated from their structural context is discernible in the way that key constructors of biopsychosocial discourse around ME/CFS and MUS are heavily influenced by – and implicated within - structures revolving around welfare reform. Here, there is a further twist to the tale in that these key constructors – many of them psychiatrists - rarely demonstrate any insight into their own psychology, and how this psychology has shaped and has been shaped by a collective (neoliberal, ableist) consciousness that seeks to delineate ‘deserving’ and ‘undeserving’ disability. In fact, biopsychosocial discourse, and the biopsychosocial model as it pertains to ME/CFS and MUS, lacks any form of recognition of how the broader structural context might impact on patient health and life outcomes. Not surprising really, since this would require influential biopsychosocial proponents to implicate themselves in the systematic social and epistemic injustices sustained by chronically ill and disabled people - not a good look for professionals who pledge to do no harm.
Deconstructing dominant narratives
Also of interest, notably in the case of ME/CFS, is how particular ideas around ME/CFS have become taken for granted truths. These now dominant narratives arguably demonstrate everything discussed so far: the power of language in shaping reality, the ability of psy practice to oppress marginalised groups, and the selective attention of influential actors in ignoring structural (political, ideological) influences in health and illness. In the rest of this blogpost, I will briefly examine two examples, that of the ’ME lobby’ and the argument that ‘benefits can make patients worse’.
I am using references to support the rest of this blogpost as I think it’s important to demonstrate that historical alliances that underpin these narratives are not part of a ‘conspiracy discourse’ but can be clearly observed in exchanges between eminent academics (psychiatrists) and actors within the UK government, as far back as at least the early 1990s. Much of the earlier material can be found in the 'secret files' documentation available on Valerie Eliot Smith's website.
The empirically unsupported ‘benefits can often make patients worse’ story can be noted in the minutes of a 1993 talk given by Simon Wessely and another psychiatrist (Peter Thomas) to the UK DLA advisory board - in fact this was the exact phrase attributed to Wessely (see Wessely cited in McGrath, 1993). The DLA (Disability Living Allowance) advisory board was involved in determining who would qualify for disability benefits, and was presided over for some time by Mansel Aylward, who held a number of positions in the UK Department of Work and Pensions (DWP). Aylward would go on to head up the Cardiff University Centre for Psychosocial and Disability Research, sponsored for some time by Unum.* In brief, Unum is an insurance giant that deals with disability and chronic illness cover; some ME/CFS academics are known to have provided consultancy to such companies and also to the UK government regarding disability income protection and welfare provision respectively (Hooper & Williams, 2010; see also Marks, 2017).
*See Rutherford 2007; Stewart 2016; Faulkner 2016 for detailed accounts of the academia – insurance industry – government connections.
Another example of the ‘benefits can make patients worse’ narrative can be found with Michael Sharpe (another eminent academic-psychiatrist in the field of ‘CFS’) in his contribution to a Unum publication (Sharpe, 2002). Unsurprisingly given the context, Sharpe also suggested that insurance payments could be an obstacle to recovery. This narrative would unfortunately find its way into literature that became central to UK welfare reform, and the denial of benefits to many chronically ill and disabled people who relied on them. In 2005, Mansel Aylward and colleague Gordon Waddell (Waddell was honorary professor at the Cardiff centre) published their monolith ‘The Scientific and Conceptual Basis of Incapacity Benefits’ (Waddell and Aylward, 2005), the academic foundation for the 2006 Welfare Reform Bill and the 2007 Welfare Reform Act, followed by their 2010 offering, ‘Models of Sickness and Disability’ (Waddell & Aylward, 2010). Both publications reinforced the idea that benefits perpetuate or reinforce disability, rather predictably since this was the main thrust of, and justification for, welfare reform. That is, a story was constructed that most chronic illness is recoverable through psychosocial means but made worse by actors and structures who ‘collude’ with the notion of permanent or long-term disability, including an allegedly overly generous social security system. Here, the notion that dominant discourse may have as much to do with social power as it has to do with ‘truth’ is evident.
Finally, the beginnings of the now widely recognised, and highly damaging, negative stereotyping of people with ME as a form of ‘activist lobby’ can be found in an October 1993 letter from Wessely to Aylward (Wessely, 1993). Wessely expressed his dissatisfaction that ME/CFS would appear in the then upcoming DLA Handbook as a neurological condition. (In particular, he was unhappy that the ME Association had announced this to members). As well stressing the financial costs of supporting this decision (another theme to be found through biopsychosocial discourse), Wessely suggested that recognition of ME as a neurological illness “represents the triumph of an effective lobby over scientific evidence” (Wessely, 1993). Wessely then went on say that the only difference between CFS and other psychiatric disorders is the existence of a “powerful lobby group that dislikes any association with psychiatry”.
In the above example, the emergent rhetoric of the ‘ME lobby’, further positioned as anti-psychiatry, can be discerned. This rhetoric was reinforced by (for example) Aylward in a letter to Wessely (Aylward, 1993), Sharpe in his Unum writings (Sharpe, 2002), and would later go on to be widely promulgated by the UK press (see Liddle, 2019; McKie, 2011; Pemberton, 2011). The fact that this ‘lobby’ is a group of chronically ill and disabled patients and their allies, asking for the basic right of adequate biomedical care, is overshadowed by rhetoric entwined with social power. Further, this narrative of patient ‘militancy’ has been thoroughly examined and been found lacking in empirical support (Blease & Geraghty, 2018). In this way, truth is erased and is replaced with something quite different. This, like many narratives around ME/CFS and MUS, is a strong example of how language (in the form of discourse) can construct as well as reflect reality.
The history of ME/CFS and MUS is full of ironies. Aylward, in the above referenced November 1993 letter to Wessely, criticises the stance of patient charities for being “what the lobby would like to be the truth rather than what is the truth” (Aylward, 1993). Aylward and co have spent much of their careers promulgating stigmatising narratives that they would like to be the truth, rather than what is the truth, but that seems to pass Aylward by. In other words, critical reflexivity (yet another tenet of critical psychology, something akin to critical self-awareness) does not seem to be Aylward’s strong point, but that might be said of the majority of the biopsychosocial inner circle.
Anthony A (2019, July 28). ME and the perils of internet activism. The Guardian. Available at: https://www.theguardian.com/society/2019/jul/28/me-perils-internet-activism-michael-sharpe-myalgic-encephalomyelitis-chronic-fatigue-pace-trial
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Blease, C., & Geraghty, K. J. (2018). Are ME/CFS patient organizations “militant”?: Patient protest in a medical controversy. Journal of Bioethical Inquiry, 15(3), 393–401.
Faulkner, G. (2016). "In the Expectation of Recovery": Misleading medical research and welfare reform. The Centre for Welfare Reform. https://www.centreforwelfarereform.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf
Hooper, M. & Williams, M. (2010). Magical Medicine: How to make a disease disappear. http://www.investinme.org/Article400%20Magical%20Medicine.shtml
Liddle, R. (2019, March 17). Always fatigued — yet they never tire of claiming their malady really is a virus. The Sunday Times. https://www.thetimes.co.uk/article/always-fatigued-yet-they-never-tire-of-claiming-their-malady-really-is-a-virus-d7s7qlvbk
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McKie, R. (2011, August, 21). Chronic fatigue syndrome researchers face death threats from militants. The Guardian. https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
Rutherford, J. (2007). New Labour, the market state, and the end of welfare. Soundings: A Journal of Politics and Culture, 36, 38-52.
Pemberton M (2011, August 29) Protestors have got it all wrong about ME. The Times. https://www.telegraph.co.uk/news/health/8641007/Protesters-have-got-it-all-wrong-on-ME.html
Sharpe, M. (2002). Functional symptoms and syndromes: Recent developments. In: Unum Provident: Trends in Health and Disability [Brochure] (pp.14-21) https://issuu.com/maxhead/docs/unum_cmo_report_2002/18
Stewart, M. (2016). Cash Not Care: The Planned Demolition of the UK Welfare State. New Generation Publishing.
Waddell, G. & Aylward, M. (2005). The Scientific and Conceptual Basis of Incapacity Benefits. The Stationery Office.
Waddell, G. & Aylward, M. (2010). Models of Sickness and Disability: Applied to Common Health Problems. Royal Society of Medicine.
Wessely, S. (1993, October 1) [Letter to Mansel Aylward]. The National Archives. https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf