Contesting the psychiatric framing of ME/CFS

Abstract

ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate. This paper specifically 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 isn't 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 ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model

“…Essentially, the CBM asserts that certain predisposing factors increase the risk of developing ME/CFS, then a precipitating factor or event, such as an infection, initiates the illness and later a host of psycho-social factors are involved in maintenance of ME/CFS. We find that this model narrative is contested by most patients (Spandler and Allen, 2017) – a clear warning light. In addition, research evidence continues to refute the model.…”

The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al

“…Another argument alluded to by Wilshire et al for rejecting the findings of the PACE trial is that they imply that CFS or ME is psychiatric or psychological in nature (an illness designation still strongly stigmatised in our society) rather than purely biomedical [ 24 ]. However understandable this view may be, we believe it to be mistaken.…”

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified

“…This may be true for patients with a range of mental health complaints, but it is not a transferable argument for patients with medically unexplained symptoms. ME/CFS patients for instance, reject psychiatric framing of the illness [25] and many perceive cognitive behavioural therapies to be both unhelpful and harmful [41,56,67]. Such facts should not be ignored by IAPT supporters.…”

“…The CB model of MUS is identical to the CB model of chronic fatigue syndrome [24] -we note that the MUS treatment model is derived from theory and research in ME/CFS. Yet, Deary et al fail to mention the widespread opposition of ME/CFS patients and advocacy groups to this treatment model and the psychological framing of the illness [25,26]. This we view as a bias, promotion of CBT as a treatment for MUS without discussion of negative patient feedback or critical literature.…”