Skip to main content
Log in

Contesting the psychiatric framing of ME/CFS

  • Original Article
  • Published:
Social Theory & Health Aims and scope Submit manuscript

Abstract

ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate. This paper examines why framing the condition as a psychiatric issue—what we refer to as ‘psychiatrisation’—has been so heavily contested by patients and activists. We argue that this contestation is not simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law. We highlight the potentially harmful consequences of psychiatrisation which can lead to people’s experiential knowledge being discredited. This stems, in part, from a psychiatric-specific form of ‘epistemic injustice’ which can result in unhelpful, unwanted and forced treatments. This understanding helps explain why the psychiatrisation of ME/CFS has become the focus of such bitter debate and why psychiatry itself has become such a significant field of contention, for both ME/CFS patients and mental health service users/survivors. Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings, and therefore share a collective struggle for justice and legitimation. Reasons why this shared struggle has not resulted in alliances between ME and mental health activists are noted.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

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

    Google Scholar 

  • Blease, C., H. Carel, and K. Geraghty. 2016. Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome. Journal of Medicine Ethics. doi:10.1136/medethics-2016-103691.

    Google Scholar 

  • Blease, C., and K. Geraghty. 2016b. Mind the gap: Ethical failures in the treatment of chronic fatigue syndrome. BMJ blog. http://blogs.bmj.com/medical-ethics/2016/12/06/mind-the-gap-ethical-failures-in-the-treatment-of-chronic-fatigue-syndrome/. Accessed 6 Dec 2016.

  • Brindley, M. 2011. Dr Myhill is allowed to practise medicine again. http://www.meassociation.org.uk/2011/01/dr-myhill-is-allowed-to-practise-medicine-again/. Accessed 8 Jan 2011.

  • Broughton, J., S. Harris, L. Beasant, E. Crawley, and S.M. Collin. 2017. Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England. BMC Health Services Research 17: 384. doi:10.1186/s12913-017-2337-6.

    Article  Google Scholar 

  • Burstow, B., B.A. LeFrancois, and S. Diamond (eds.). 2014. Psychiatry disrupted: Theorizing resistance and crafting the (R)evolution. Montreal: McGill-Queen’s University Press.

    Google Scholar 

  • Callard, F., N. Sartorius, J. Arboleda-Flórez, P. Bartlett, H. Helmchen, H. Stuart, J. Taborda, and G. Thornicroft. 2012. Mental illness, discrimination and the law: Fighting for social justice. Chichester: Wiley.

    Book  Google Scholar 

  • Carel, H., and I.J. Kidd. 2014. Epistemic injustice in healthcare: A philosophical analysis. Medicine, Health Care and Philosophy 17: 529–540.

    Article  Google Scholar 

  • Crichton, P., H. Carel, and I.J. Kidd. 2017. Epistemic injustice in psychiatry. BJPsych Bulletin. 41 (2): 65–70.

    Article  Google Scholar 

  • Crossley, N. 2004. Not being mentally ill: Social movements, system survivors and the oppositional habitus. Anthropology and Medicine 11 (2): 161–180.

    Article  Google Scholar 

  • Crossley, N. 2006. Contesting psychiatry: Social movements in mental health. London: Routledge.

    Google Scholar 

  • David, A.S., S. Wessely, and A.J. Pelosi. 1988. Postviral fatigue syndrome: time for a new approach. BMJ 296: 696–699.

    Article  Google Scholar 

  • Dawson, J., and G. Szmukler. 2006. Fusion of mental health and incapacity legislation. British Journal of Psychiatry 188: 504–509.

    Article  Google Scholar 

  • Deale, A., and S. Wessely. 2001. Patients’ perceptions of medical care in chronic fatigue syndrome. Social Science and Medicine 52: 1859–1864.

    Article  Google Scholar 

  • Dimmock, M.E., A.A. Mirin, and L.A. Jason. 2016. Estimating the disease burden of ME/CFS in the United States and its relation to research funding. Journal of Medicine and Therapeutics 1 (1): 1–7.

    Article  Google Scholar 

  • Double, D. 2006. My tutor said to me, this talk is dangerous. Times Higher Education. https://www.timeshighereducation.com/features/my-tutor-said-to-me-this-talk-is-dangerous/202721.article. Accessed 21 Apr 2006.

  • Fitzpatrick, M. 2002. The making of a new disease. The Guardian. ‘https://www.theguardian.com/education/2002/feb/07/medicalscience.healthandwellbeing. Accessed 7 Feb 2012.

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

    Book  Google Scholar 

  • Geraghty, K.J., and A. Esmail. 2016. Chronic fatigue syndrome: Is the biopsychosocial model responsible for patient dissatisfaction and harm? British Journal of General Practice 66 (649): 437–438.

    Article  Google Scholar 

  • Goudsmit, E.M., L.A. Jason, J. Nijs, and K.E. Wallman. 2012. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: A consensus document. Disability and Rehabilitation 34 (13): 1140–1147.

    Article  Google Scholar 

  • Gilderdale, K. 2011. One Last Goodbye: Sometimes only a mother’s love can help end the pain. London: Ebury Press.

    Google Scholar 

  • Hooper, R. 2006. First official UK death from chronic fatigue syndrome. New Scientist.

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

    Google Scholar 

  • Houdenhove, B.V. 2002. Listening to CFS: Why we should pay more attention to the story of the patient. Journal of Psychosomatic Research 52: 495–499.

    Article  Google Scholar 

  • Huibers, M., and S. Wessely. 2006. The act of diagnosis: Pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 36 (7): 895–900.

    Article  Google Scholar 

  • Institute of Medicine. 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: National Academies Press.

    Google Scholar 

  • Jason, L.A., J.A. Richman, F. Friedberg, L. Wagner, R.R. Taylor, and K.M. Jordan. 1997. Politics, science, and the emergence of a new disease: The case of Chronic Fatigue Syndrome. American Psychologist 52: 973–983. PMID:9301342.

    Article  Google Scholar 

  • Jason, L.A., J.A. Richman, F. Friedberg, L. Wagner, R.R. Taylor, and K.M. Jordan. 1998. More on the biopsychosocial model of chronic fatigue syndrome. American Psychologist 53: 1080–1081.

    Article  Google Scholar 

  • Jason, L.A., R.R. Taylor, et al. 2001. Attitudes regarding chronic fatigue syndrome: The importance of a name. Journal of Health Psychology 6: 61–71.

    Article  Google Scholar 

  • Jason, L.A., R.R. Taylor, and J.A. Richman. 2002. The role of science and advocacy regarding a chronic health condition: The case of chronic fatigue syndrome. In Social psychological applications to social issues: The social psychology of politics, vol. 5, ed. V. Ottati, et al., 157–172. New York: Kluwer Academic/Plenum Publishers.

    Google Scholar 

  • Jason, L.A. 2007. What’s in a name: Public policy implications of language. The Community Psychologist 40: 35–39.

    Google Scholar 

  • Jason, L.A. 2012. Small wins matter in advocacy movements: Giving voice to patients. American Journal of Community Psychology 49 (3–4): 307–316.

    Article  Google Scholar 

  • Jason, L.A., L. Nicholson, and M. Sunnquist. 2016. Patient perceptions regarding possible changes to the name and criteria for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Journal of Family Medicine & Community Health 3 (4): 1–7.

    Google Scholar 

  • Johnson, C.Y. 2015. Why the diseases that cause the most harm don’t always get the most research money. Washington Post.

  • Kidd, I.J., and H. Carel. 2016. Epistemic injustice and illness. Journal of Applied Philosophy 3 (2): 1–19.

    Google Scholar 

  • Kitei, M. 2014. Candid conversation with Dr. Ian Lipkin. CFS Central.

  • Liegghio, M. 2013. A denial of being: Psychiatrization as epistemic violence. In Mad matters: A critical reader in Canadian mad studies, ed. B. LeFrancois, R. Menzies, and G. Reaume, 122–129. Toronto, ON: Canadian Scholars’ Press.

    Google Scholar 

  • Lost Voices. 2008. Invest in ME. Great Britain: Wild Conversations Press.

    Google Scholar 

  • ME Association. 2015. ME/CFS/ME illness management survey results: No decisions about me without me. Patient Survey. May 2015.

  • Millen, N., C.L. Peterson, and R. Woodward. 1998. A sociological analysis of chronic fatigue syndrome and the impact on family support structures. International Journal of Sociology and Social Policy 18 (7/8): 127–147.

    Article  Google Scholar 

  • Millen, N. 2001. A Sociological Study of Chronic Fatigue Syndrome and the micro-politics of change in illness construction The Sociological Association of Australia Conference Health Sociology Section, Sydney University Dec 13–16th 2001.

  • Millen, N., and C. Walker. 2002. Overcoming the stigma of chronic illness: strategies for normalisation of a ‘spoiled identity’. Health Sociology Review 10: 89–97.

    Article  Google Scholar 

  • Minkowitz, T. 2015. Advancing the rights of users and survivors of psychiatry using the UN convention on the rights of people with disabilities. In Madness, distress and the politics of disablement, ed. H. Spandler, J. Anderson, and B. Sapey, 171–182. Bristol: Policy Press.

    Chapter  Google Scholar 

  • Mountstephen, A., and M. Sharpe. 1997. Chronic fatigue syndrome and occupational health. Occupational Medicine 47 (4): 217–227.

    Article  Google Scholar 

  • Munson, P. 2000. Stricken. Voices from the hidden epidemic of chronic fatigue syndrome. New York: The Haworth Press.

    Google Scholar 

  • National Institutes of Health (2016) Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).

  • NICE (2007) National Institute for Clinical Excellence: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. NHS National Institute for Health and Clinical Excellence.

  • Owen, G.S., I.C. Ster, A.S. David, G. Szmukler, P. Hayward, G. Richardson, and M. Hotopf. 2011. Regaining mental capacity for treatment decisions following psychiatric admission: A clinico-ethical study. Psychological Medicine 41: 119–128.

    Article  Google Scholar 

  • Page, L., and S. Wessely. 2003. Medically unexplained symptoms: Exacerbating factors in the doctor-patient encounter. The Journal of the Royal Society of Medicine 96: 223–227.

    Article  Google Scholar 

  • Petrie, Keith, and S. Wessely. 2002. Modern worries, new technology, and medicine Editorial. British Medical Journal 324: 690–691.

    Article  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.

    Article  Google Scholar 

  • Richman, J.A., and L.A. Jason. 2001. Gender biases underlying the social construction of illness states: The case of chronic fatigue syndrome. Current Sociology 49: 15–29.

    Article  Google Scholar 

  • Roberts, E., S. Wessely, T. Chalder, et al. 2016. Mortality of people with chronic fatigue syndrome: A retrospective cohort study in England and Wales. The Lancet 2016 (387): 1638–1643.

    Article  Google Scholar 

  • Romme, M.A.J., S.D. Escher, J. Dillon, D. Corstens, and M. Morris. 2009. Living with voices: 50 stories of recovery. Herefordshire: PCCS Books.

    Google Scholar 

  • Scheff, T.J. 1966. Being mentally ill: A sociological theory. Chicago: Aldine.

    Google Scholar 

  • Shepherd, C. 2015. It’s time for doctors to apologise to their ME patients 07 Dec 2015 ME-patients.html.

  • Showalter, E. 1997. Hystories: Hysterical epidemics and modern media. New York: Columbia University Press.

    Google Scholar 

  • Smith, C., and S. Wessely. 2014. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. Journal of Neurology, Neurosurgery & Psychiatry 85: 214–219.

    Article  Google Scholar 

  • Spandler, H., and T. Calton. 2009. Psychosis and human rights: Conflicts in mental health policy and practice. Social Policy and Society 8 (2): 245–256.

    Article  Google Scholar 

  • Spandler, H. 2014. The problem of psychiatric diagnosis. In Approved Mental Health Practice: Essential themes for students and practitioners, ed. S. Matthews, P. O’Hare, and J. Hemmington, 66–85. Palgrave Macmillan.

  • Spandler, H., J. Anderson, and B. Sapey. 2015. Madness, distress and the politics of disablement. Bristol: Policy Press.

    Book  Google Scholar 

  • Spandler, H. 2016. Healing the rifts between mental health workers and psychiatric survivors. http://blogs.lse.ac.uk/businessreview/2016/11/21/healing-the-rifts-between-mental-health-workers-and-psychiatric-survivors/. Accessed 21 Nov 2015.

  • Spandler, H., and M. Mckeown. 2017. Exploring the case for truth and reconciliation in mental health services. Mental Health Review Journal 22 (2): 83–84.

    Article  Google Scholar 

  • Steven, I.D., B. McGrath, et al. 2000. General practitioners’ beliefs, attitudes and reported actions towards chronic fatigue syndrome. Australian Family Physician 29: 80–85.

    Google Scholar 

  • Szmukler, G. 2004. Mental health legislation is discriminating and stigmatising. In Every family in the land, ed. A. Crisp. London: The Royal Society of Medicine Press.

    Google Scholar 

  • Torres-Harding, S.R., T.A. Latta, M.G. Njoku, and L.A. Jason. 2005. Chronic fatigue syndrome: Community psychologists confronting controversy 38: 11–13.

  • Tuller, D. 2015. Trial by error the troubling case of the Pace chronic fatigue syndrome study. http://www.meassociation.org.uk/2015/10/trial-by-error-the-troubling-case-of-the-pace-chronic-fatigue-syndrome-study-final-instalment-23-october-2015/.

  • Travers, M.K., and J. Lawler. 2008. Self within a climate of contention: Experiences of chronic fatigue syndrome. Social Science and Medicine 66 (2): 315–326.

    Article  Google Scholar 

  • Walker, M.J. 2003. Skewed: Psychiatric hegemony and the manufacture of mental illness in multiple chemical sensitivity, gulf war syndrome, myalgic encephalomyelitis and chronic fatigue syndrome. London: Slingshot Publications.

    Google Scholar 

  • Wallcraft, J., and D. Shulkes. 2012. Can psychiatry apologise for crimes against humanity? Open Mind: 12–13.

  • Wardrope, A. 2015. Medicalization and epistemic injustice. Medical Health Care Philosophy 18: 341–352.

    Article  Google Scholar 

  • Whitehead, L.C. 2006. Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis. Social Science & Medicine 62 (9): 2236–2245.

    Article  Google Scholar 

  • Wright, N. 2016. ME affects four times as many women as men. Is that why we’re still disbelieved? The Guardian. https://www.theguardian.com/commentisfree/2016/sep/27/me-affects-four-times-women-men-chronic-fatigue-syndrome. Accessed 27 Sept 2016.

Download references

Acknowledgements

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Helen Spandler PhD.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Spandler, H., Allen, M. Contesting the psychiatric framing of ME/CFS. Soc Theory Health 16, 127–141 (2018). https://doi.org/10.1057/s41285-017-0047-0

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1057/s41285-017-0047-0

Keywords

Navigation