Contesting the psychiatric framing of ME/CFS, by Helen Spandler, Meg Allen in Social Theory & Health, v 15 pp 1–15 [Published Online: 16 August 2017]
ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate.
This paper examines why framing the condition as a psychiatric issue—what we refer to as ‘psychiatrisation’—has been so heavily contested by patients and activists. We argue that this contestation is not simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law.
We highlight the potentially harmful consequences of psychiatrisation which can lead to people’s experiential knowledge being discredited. This stems, in part, from a psychiatric-specific form of ‘epistemic injustice’ which can result in unhelpful, unwanted and forced treatments.
This understanding helps explain why the psychiatrisation of ME/CFS has become the focus of such bitter debate and why psychiatry itself has become such a significant field of contention, for both ME/CFS patients and mental health service users/survivors.
Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings, and therefore share a collective struggle for justice and legitimation. Reasons why this shared struggle has not resulted in alliances between ME and mental health activists are noted.
The contested framing of ME/CFS
On the one hand, ME activists argue that a narrow focus on the psychological elements of the illness has blocked bio-medical research and treatment (Jason 2012). For example, in the UK, the Department of Health controversially invested five million pounds into researching the benefits of psychological therapies (‘the PACE trial’), whereas an institute recently established at the University of East Anglia as a centre of excellence for biomedical research into ME/CFS had to be crowdsource funded by patients. This highlights the difficulties medical researchers experience in securing grants for CFS/ME research (Kitei 2014).
Some commentators have noted that less research funding is spent on conditions where patients are seen as responsible for, or contributing to, their illness, as can be seen in the underfunding of research into lung disease and liver cancer (Johnson 2015; Dimmock et al. 2016). When an illness is framed as psychological, it is people’s H. Spandler, M. Allen reactions, emotions and behaviour, rather than any underlying illness, which become the focus of scrutiny, and it is a short step from this to the assumption that people are ‘responsible’ for their illness and recovery.
In addition, critics argue that assuming ME/CFS is a psychological problem has resulted in poorly designed research studies which may have included people without the condition and excluded those severely affected by the condition from the studies (Jason et al. 1997; Jason 2012; ME Association 2015; Tuller 2015). ME activists argue that this situation has:
diminished the legitimacy and belief in the severity of the illness among physicians and allowed the psychiatrists to appropriate the condition to their own realm of influence…and put pressure on governments to apply psychiatric labels in order to reduce work claims for illness compensations (Millen 2001, p. 8).
On the other hand, the psychiatric profession has portrayed ME activists as blocking progress by campaigning against any psychological or psychiatric research investment and treatments (Smith and Wessely 2014). Some psychiatrists and medical practitioners have criticised ME activists for their ‘strident’ denial of any psychological component to their illness as ‘frankly offensive’ by ‘stigmatising mental health patients and vilifying psychiatry’ (ibid: 218).
Yet both sides of this divisive debate have found it difficult to evidence their case. Whilst ‘psychology’ is seen as an important factor in people’s recovery from many types of illnesses, the psychiatrisation of ME/CFS means that psychology is often seen as the underlying determining factor of the illness, not just an additional element in recovery (Jason 2012). This assumption has been hard to prove, or indeed disprove.
Similarly, whilst ME/CFS activists can point to some physiological abnormalities in patients (Institute of Medicine 2015), to date they have been unable to generalise from these findings. Whilst more research and better diagnostic tests may well establish a physiological basis for the condition, the evidence is presently weak. Moreover, a clear-cut division between ‘mental’ and ‘physical’ is hard to sustain in practice. It is important to note that the discipline of psychiatry has considerably more power and influence than patients’ organisations and individual sufferers, so these debates are not conducted on a level-playing field. In the meantime, people who experience contested illnesses, like ME/CFS, face a particular struggle for legitimation or, what has been referred to as, ‘epistemic justice’.