Are ME/CFS Advocacy Organisations ‘Militant’? Patient Protest in a Medical Controversy

Around 250,000 people in the UK and one million people in the USA suffer from the illness referred to as Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) (hereafter, ‘ME/CFS’). At the mild end of the spectrum sufferers experience fatigue and curtail everyday activities; at the moderate to severe end sufferers are often left housebound, even bedbound for years, experiencing severe lethargy, light and noise sensitivity, cognitive deficits, cardiovascular complaints and chronic pain (Smith et al., 2015).
ME/CFS is poorly understood because the aetiology of the condition is not yet known. The mechanisms underpinning the disease are still open to speculation, and compared with other chronic diseases and conditions, such as cancer or multiple sclerosis, research is still in its infancy. To adopt Imre Lakatos’ terminology no progressive research programme has yet merged in ME/CFS scholarship and the direction of basic scientific research is still subject to deep debate and disagreement (Lakatos, 1970). Indeed, for nearly 40 years researchers, doctors and patients appear to have been engaged in debate (‘battle’) over the cause of the illness and the best treatment approach in the absence of clear evidence for disease pathogenesis.
ME/CFS is also widely recognized in the public sphere as a controversial illness, having received extensive coverage in the mainstream British press. In this paper, we scrutinize the nature of this debate: in particular we focus on the use of the ‘militant’ trope to characterize patient and patient organizations (hereafter ‘POs’) protest. We observe that the language and tactics deployed by prominent medical professionals in this field in response to PO actions, has scarcely received critical attention to date (bar Blease et al. 2017 and Spandler and Allen, 2017). We ask: Does the advocacy of ME/CFS POs warrant the descriptor “militant”? In a previous paper, we focused on injustices in ME/CFS related to patient-doctor communication in the medical encounter. Here, we expand on Miranda Fricker’s philosophical framework of ‘epistemic injustice’ to explain how POs have endured authoritarian and pejorative responses from the medical profession (Blease et al., 2017; Kidd and Carel, 2017).