Are ME/CFS Patient Organizations “Militant”?

Patient Protest in a Medical Controversy

Abstract

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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Notes

  1. 1.

    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).

  2. 2.

    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.

  3. 3.

    Among the methodological criticisms of the PACE trial is the claim that it relies on a small number interventions which have been tested against inadequate controls—most commonly, standard medical care (GP care in the community) (Núñez et al., 2011; Twisk and Geraghty 2015; Geraghty 2016).

  4. 4.

    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).

  5. 5.

    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).

  6. 6.

    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).

  7. 7.

    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).

References

  1. #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.

  2. Åsbring, P., and A.L. Närvänen. 2002. Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research 12(2): 148–160.

    PubMed  Google Scholar 

  3. Blease, C., H. Carel, and K. Geraghty. 2017. Epistemic injustice in healthcare encounters: Evidence from chronic fatigue syndrome. Journal of Medical Ethics 43: 549–557.

    Article  Google Scholar 

  4. Blease, C., J.M. Kelley, and M. Trachsel. 2018. Informed consent in psychotherapy: Implications of evidence-based practice. Journal of Contemporary Psychotherapy 48(2): 69–78.

    Article  Google Scholar 

  5. Blease, C., S.O. Lilienfeld, and J.M. Kelley. 2016. Evidence-based practice and psychological treatments: the imperatives of informed consent. Frontiers in psychology, 7, 1170.

    Article  Google Scholar 

  6. Brown, P., and S. Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health & Illness 26(6): 679–694.

    Article  Google Scholar 

  7. Carel, H., and I.J. Kidd. 2014. Epistemic injustice in healthcare: A philosophial analysis. Medicine, Health Care and Philosophy 17(4): 529–540.

    Article  Google Scholar 

  8. 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.

  9. Clark, L.V., F. Pesola, J.M. Thomas, et al. 2017. Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): A pragmatic randomised controlled trial. The Lancet 390(10092): 363–373.

    Article  Google Scholar 

  10. Collins, H., and T. Pinch. 2008. Dr. Golem: How to think about medicine. University of Chicago Press.

  11. Fricker, M. 2007. Epistemic injustice: Power and the ethics of knowing. Oxford: Oxford University Press.

  12. 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 

  13. Geraghty, K.J. 2016. PACE-Gate: When clinical trial evidence meets open data access. Journal of Health Psychology 22(9): 1106–1112.

    Article  Google Scholar 

  14. ———. 2017. Further commentary on the PACE trial: Biased methods and unreliable outcomes. Journal of Health Psychology 22(9): 1209–1216.

    Article  Google Scholar 

  15. 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.

    Article  Google Scholar 

  16. Godlee, F. 2011. Ending the stalemate over CFS/ME. BMJ 342: d3956

    Article  Google Scholar 

  17. Green, C.R., P. Cowan, R. Elk, et al. 2015. National Institutes of Health pathways to prevention workshop: Advancing the research on myalgic encephalomyelitis / chronic fatigue syndrome. Annals of Internal Medicine 162(12): 860–865.

    Article  Google Scholar 

  18. Hawkes, N. 2011. Dangers of research into chronic fatigue syndrome. BMJ 342: d3780.

    Article  Google Scholar 

  19. Hornig, M., J.G. Montoya, N.G. Klimas, et al. 2015. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Science Advances 1(1): e1400121.

    Article  Google Scholar 

  20. Hossenbaccus, Z. and P.D. White. 2013. Views on the nature of chronic fatigue syndrome: Content analysis. JRSM Short Reports 4(1): 1–6.

    Article  Google Scholar 

  21. IOM. 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. National Academies Press. Institute of Medicine.

  22. Irwin, A. (2002). Citizen science: A study of people, expertise and sustainable development. Routledge.

  23. 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.

  24. Kidd, I.J., and H. Carel. 2017. Epistemic injustice and illness. Journal of Applied Philosophy 34(2): 172–190.

    Article  Google Scholar 

  25. 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.

    Article  Google Scholar 

  26. Kindlon, T. 2017. Do graded activity therapies cause harm in chronic fatigue syndrome? Journal of Health Psychology 22(9): 1146–1154.

    Article  Google Scholar 

  27. Kirke, K.D. 2017. PACE investigators’ response is misleading regarding patient survey results. Journal of Health Psychology 22(9): 1168–1176.

    Article  Google Scholar 

  28. 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.

  29. Marsh, S. 2011. Doctor’s hate mail is sent by the people he tried to cure. The Times, August 6.

  30. McEvedy, C.P., and A.W. Beard. 1970. Royal Free epidemic of 1955: A reconsideration. British Medical Journal 1(5687): 7–11.

    CAS  Article  Google Scholar 

  31. 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.

  32. Najman, J.M., D. Klein, and C. Munro. 1982. Patient characteristics negatively stereotyped by doctors. Social Science & Medicine 16: 1781–1782.

    CAS  Article  Google Scholar 

  33. Nakatomi, Y., K. Mizuno, A. Ishii, et al. 2014. Neuroinflammation in patients with chronic fatigue syndrome/myalgic encephalomyelitis: An 11C-(R)-PK11195 PET study. Journal of Nuclear Medicine 55(6): 945–950.

    CAS  Article  Google Scholar 

  34. 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.

  35. 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.

    Article  Google Scholar 

  36. Pemberton, M. 2011. Protestors have got it all wrong about ME. The Times, August 29.

  37. Petrie, K.J., and J. Weinman. 2017. The PACE trial: It’s time to broaden perceptions and move on. Journal of Health Psychology 22(9): 1198–1200.

    Article  Google Scholar 

  38. 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.

    Article  Google Scholar 

  39. Ramsay, A.M. 1957. Encephalomyelitis in north west London. The Lancet 270(7007): 1196–1200.

    Article  Google Scholar 

  40. Sharpe, M.C., L.C. Archard, J.E. Banatvala, et al. 1991. A report—chronic fatigue syndrome: Guidelines for research. Journal of the Royal Society of Medicine 84(2): 118–121.

    CAS  Article  Google Scholar 

  41. Smith, M.E.B., E. Haney, M. McDonagh, et al. 2015. Treatment of myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review for a National Institutes of Health Pathways to Prevention workshop. Annals of Internal Medicine 162(12): 841–850.

    Article  Google Scholar 

  42. Spandler, H., and M. Allen. 2017. Contesting the psychiatric framing of ME/CFS. Social Theory & Health 16(2): 127–141.

    Article  Google Scholar 

  43. 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.

    Article  Google Scholar 

  44. 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: 80–85

  45. Surawy, C., A. Hackmann, K. Hawton, et al. 1995. Chronic fatigue syndrome: A cognitive approach. Behaviour Research and Therapy 33(5): 535–544.

    CAS  Article  Google Scholar 

  46. 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.

  47. 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.

  48. Van Hoof, E. 2009. The doctor–patient relationship in chronic fatigue syndrome: Survey of patient perspectives. Quality in Primary Care 17(4): 263–270.

  49. 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.

    Article  Google Scholar 

  50. Wessely, S. 1996. Chronic fatigue syndrome. Summary of a report of a joint committee of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. Journal of the Royal College of Physicians of London 30(6): 497–504.

    CAS  PubMed  Google Scholar 

  51. Wessely, S., A. David, S. Butler, et al. 1989. Management of chronic (post-viral) fatigue syndrome. The Journal of the Royal College of General Practitioners 39(318): 26–29.

    CAS  PubMed  PubMed Central  Google Scholar 

  52. White, P.D., K.A. Goldsmith, A.L. Johnson, et al. 2011. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): A randomised trial. The Lancet 377(9768): 823–836.

    CAS  Article  Google Scholar 

  53. 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 

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Correspondence to Charlotte Blease.

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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

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Keywords

  • Epistemic injustice
  • Doctor–patient communication
  • Healthcare ethics
  • ME/CFS
  • Patient activism