Are ME/CFS Patient Organizations “Militant”? by Dr Keith Geraghty and C.Blease


Senior Member
Are ME/CFS Patient Organizations “Militant”?

Are ME/CFS Patient Organizations "Militant"?

Patient Protest in a Medical Controversy Charlotte Blease & Keith J. Geraghty

Received: 1 August 2017 /Accepted: 8 April 2018 #

Journal of Bioethical Inquiry Pty Ltd. 2018

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit "militant" social and political tendencies.

The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of "militant" patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications.

Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS. Keywords Epistemic injustice . Doctor–patient communication . Healthcare ethics. ME/CFS . Patient activism Introduction Around 250,000 people in the United Kingdom and one million people in the United States suffer from the illness referred to as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) (hereafter, ME/CFS). At the


The nature of ME/CFS is also minimized de facto by the treatment prescribed in the NICE guidelines. So it's double hit...for UK patients as they are 1) viewed as militant, and 2) believed to have a "treatable" illness by addressing hysteria. In the US, we definitely benefit from the IOM report, but many doctors remain uneducated. More leadership by the CDC in actively educating about ME/CFS could reduce this further.

The one advantage in the UK, is that the educational and top-down institutional model within the NHS, can lead to a much more rapid change in perspective across the board if the message through NICE is changed to reflect a biomedical approach. In the US, even if the CDC changed it's tune, we have a diffuse way of spreading information that is dependent on medical schools and individual health organizations incorporating the medical model into their approach.