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.
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POs are not one homogenous set of groups. In ME/CFS, there are groups representing the interests of children and families (such as the Tymes Trust), groups that represent the most severely sick (the “25% Group”) and organizations focused on promoting research into the illness (ME Research UK and InvestInME). Each group focuses on different priorities. However, we observe some commonalities across these POs: as groups involved in a health access movement (seeking equity in healthcare) and the embodied health movement (challenging the science on aetiology, diagnosis, and treatment) (Brown and Zavestoski 2004).
POs (in particular) have asserted that important data from the trial was withheld from patients and that the trial protocol had been altered mid-trial, whereby the trial authors changed an important measurement tool they used to assess improvement and recovery (the SF-36 physical function scale) (Geraghty 2017). Notably POs have consistently made representations to the U.K.’s National Institute for Clinical Care Excellence (NICE) that the evidence for the use of CBT and GET is at odds with patient surveys (Kirke 2017) and that RCTs generally recruit sufferers with milder symptoms, given sufferers who are house or bedbound are too unwell to take part in clinical trials.
It is also worth pointing out, that clinical psychologists and medical ethicists have recently challenged the standards of informed consent provided to patients undergoing psychotherapy—including cognitive behavioural therapy—for conditions or symptoms not limited to ME/CFS (Blease, Lilienfeld, and Kelley, 2016; Blease, Kelly, and Trachsel 2018; Gaab et al. 2016).
It should also be pointed out that while U.K. health authorities are in the midst of altering their recommendation that CBT and GET are appropriate treatments for the condition, in the United States the Agency for Healthcare Research and Quality (AHRQ) has recently downgraded its recommendations for CBT and GET following reviews of the evidence base by the U.S. National Institute of Health (Smith, Haney, McDonagh, et al. 2015; Green et al. 2015). Thus the picture differs between countries. In addition, a wealth of emerging biological evidence has recently been published that has begun to cast serious doubt over the accuracy of the BPS psychiatry-derived model of CFS. The U.S. Institute of Health conducted an extensive review in 2015 and stated ME/CFS is a biological illness (IOM 2015) and there is promising evidence of the relationship between brain inflammation and immune abnormalities as implicated in ME/CFS (Nakatomi, Mizuno, Ishii, et al. 2014; Hornig, Montoya, Klimas, et al. 2015).
For example, a study conducted in Sweden found that many patients experienced levels of stigmatization that were just as burdensome as the illness: “[t]hat one is not believed […] it is so hard that it is almost the worst thing” (Åsbring and Närvänen 2002). The majority of patients interviewed in this study reported feeling under suspicion by doctors or reported feeling that their moral character was interrogated (Blease et al. 2017).
An additional consequence of perceived ambiguities over the legitimacy of ME/CFS among medical professionals is the widespread failure to provide information to patients. One study found only 14.8 per cent of U.K. surgeries provided literature on the illness (and in the majority of cases this information was provided by POs) (Thomas and Smith 2005).
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Keith J. Geraghty joint first authors
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Blease, C., Geraghty, K.J. Are ME/CFS Patient Organizations “Militant”?. Bioethical Inquiry 15, 393–401 (2018). https://doi.org/10.1007/s11673-018-9866-5
- Epistemic injustice
- Doctor–patient communication
- Healthcare ethics
- Patient activism