Are ME/CFS Patient Organizations “Militant”?
- 152 Downloads
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.
KeywordsEpistemic injustice Doctor–patient communication Healthcare ethics ME/CFS Patient activism
- #ME Action 2016. Progress in ME/CFS patient advocacy: Overcoming the militant meme & why we must keep evolving. #ME Action, February 24. http://www.meaction.net/2016/02/24/progress-in-mecfs-patient-advocacy-overcoming-the-militant-meme-why-we-must-keep-evolving/.Accessed October 20, 2017.
- Carel, H., and I.J. Kidd. 2014. Epistemic injustice in healthcare: A philosophial analysis. Medicine, Health Care and Philosophy 17(4): 529–540.Google Scholar
- Chew-Graham, C., C. Dowrick, A. Wearden, et al. 2010. Making the diagnosis of chronic fatigue syndrome/myalgic encephalitis in primary care: A qualitative study. BMC Family Practice 11(2): 16.Google Scholar
- Collins, H., and T. Pinch. 2008. Dr. Golem: How to think about medicine. University of Chicago Press.Google Scholar
- Fricker, M. 2007. Epistemic injustice: Power and the ethics of knowing. Oxford: Oxford University Press.Google Scholar
- Gaab, J., C. Blease, C. Locher, and H. Gerger. 2016). Go open: A plea for transparency in psychotherapy. Psychology of Consciousness: Theory, Research, and Practice 3(2): 175.Google Scholar
- ———. 2017. Further commentary on the PACE trial: Biased methods and unreliable outcomes. Journal of Health Psychology 22(9): 1209–1216.Google Scholar
- Geraghty, K.J., and C. Blease. 2018. Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent. Journal of Health Psychology 23(1): 127–138.Google Scholar
- IOM. 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. National Academies Press. Institute of Medicine.Google Scholar
- Irwin, A. (2002). Citizen science: A study of people, expertise and sustainable development. Routledge.Google Scholar
- Kennedy, B., D. Stephenson, and N. Watson. 2016. First-Tier Tribunal, Information Rights. Appeal Number: ΕΑ/2015/0269. 20: 12–18. http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen% 20Mary% 20University% 20of% 20London% 20EA-2015-0269. Accessed October 20, 2017.
- Kidd, I.J., and H. Carel. 2017. Epistemic injustice and illness. Journal of Applied Philosophy 34(2): 172–190.Google Scholar
- Kindlon, T. 2015. Elements of rehabilitative strategies associated with negative outcomes in CFS/ME: The need for further investigations. Disability and Rehabilitation 37(5): 466–467.Google Scholar
- Kindlon, T. 2017. Do graded activity therapies cause harm in chronic fatigue syndrome? Journal of Health Psychology 22(9): 1146–1154.Google Scholar
- Lakatos, I. 1970. Falsification and the methodology of scientific research programmes. In Criticism and the growth of knowledge, edited by I. Lakatos and S. Musgrave, 91–195. Cambridge: Cambridge University Press.Google Scholar
- Marsh, S. 2011. Doctor’s hate mail is sent by the people he tried to cure. The Times, August 6.Google Scholar
- McEvedy, C.P., and A.W. Beard. 1970. Royal Free epidemic of 1955: A reconsideration. British Medical Journal 1(5687): 7–11.Google Scholar
- McKie, R. 2011. Chronic fatigue syndrome researchers face death threats. The Observer, August 20. https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis. Accessed 21 June 2018.
- Najman, J.M., D. Klein, and C. Munro. 1982. Patient characteristics negatively stereotyped by doctors. Social Science & Medicine 16: 1781–1782.Google Scholar
- NICE. 2018. NICE announces next steps in updating its guidlines on ME/CFS. February 18. https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs. Accessed 21 June 2018.
- Núñez, M., J. Fernández-Solà, E. Nuñez, J. M. Fernández-Huerta, T. Godás-Sieso, and E. Gomez-Gil. 2011. Health-related quality of life in patients with chronic fatigue syndrome: Group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clinical Rheumatology 30(3): 381–389.Google Scholar
- Pemberton, M. 2011. Protestors have got it all wrong about ME. The Times, August 29.Google Scholar
- Raine, S., S. Carter, T. Sensky, et al. 2004. General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: Qualitative study. British Medical Journal 328: 1354.Google Scholar
- Spandler, H., and M. Allen. 2017. Contesting the psychiatric framing of ME/CFS. Social Theory & Health 16(2): 127–141.Google Scholar
- Stenhoff, A.L., S. Sadreddini, S. Peters, et al. 2015. Understanding medical students’ views on chronic fatigue syndrome: A qualitative study. Journal of Health Psychology 20(2): 198–209.Google Scholar
- Steven, I.D., B. McGrath, F. Quereshi, et al. 2000. General practitioners’ beliefs, attitudes, and reported actions towards chronic fatigue syndrome. Australian Family Physician 29: 80–85Google Scholar
- Thomas, M.A., and A.P. Smith. 2005. Primary healthcare provision and chronic fatigue syndrome: A survey of patients’ and general practitioners’ beliefs. BMC Family Practice 6(1): 49.Google Scholar
- Twisk, F., and K.J. Geraghty. 2015. Deviant cellular and physiological responses to exercise in myalgic encephalomyelitis and chronic fatigue syndrome. JJ Physiology 1(2): 1–6.Google Scholar
- Van Hoof, E. 2009. The doctor–patient relationship in chronic fatigue syndrome: Survey of patient perspectives. Quality in Primary Care 17(4): 263–270.Google Scholar
- Ward, T., K. Hogan, V. Stuart, et al. 2008. The experiences of counselling for persons with ME. Counselling and Psychotherapy Research 8(2): 73–79.Google Scholar
- Wilshire, C., T. Kindlon, A. Matthees, and S. McGrath. 2017. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomedicine, Health & Behavior 5(1): 43–56.Google Scholar