A “Quality of Life” Threatening Illness

ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome)

Written by Natalie Wotherspoon

Imagine feeling ill but not being believed, experiencing symptoms no one can sufficiently explain and feeling lost in a healthcare system where there is a lack of consensus on how to define and categorise your diagnosis.

Myalgic Encephalopathy (ME), also known as chronic fatigue syndrome (CFS), “is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated” (NICE 2021, p.84). ME can impact on quality of life more than multiple sclerosis and certain cancers (NICE, 2021) but my research shows that ME remains belittled and stigmatised, often accompanied by accusations of malingering and an unfounded association with mental illness. The popular media has focused on the overlaps between long covid and ME (The Telegraph, The Guardian), stoking old debates over the treatment of ME and the nature of the illness (BMJ, 2021). Instead of focusing on what ME is, my research focused on how. How have people experienced their ME diagnosis? How do people live with the condition and how do they make sense of what is often a confusing, contested and debilitating illness? 

To answer these questions, my research combined historical archival research and contemporary interviews with people who had been diagnosed with ME. Looking to the past can help us to explain contemporary experiences and understandings. The stigma and psychologising of ME dominated the contemporary research findings but it was unclear why people living with ME frequently experienced their illness being associated with mental illness. There are, I argue, distinct continuities between historical and contemporary framings of fatigue dominated illness. This is not to say that historical diagnoses (neurasthenia and the Royal Free Disease) are the same as contemporary ME but they have, at times, been interpreted in similar ways. Exploring the histories of neurasthenia and the Royal Free Disease showed how the framing of these conditions shares similarities with the psychologising of ME and scepticism over the reality of the condition.

However, there is reason to be hopeful that patients might see improvements in their care. The All-Party Parliamentary Group (APPG) on ME has recently published a report calling for a cultural and medical transformation in the way that ME is treated and perceived. The report particularly emphasises the need for ME to be medically and publicly recognised as a physical illness. My research highlights how the wellbeing of patients is negatively affected by the insistence they are suffering from mental illness and/or malingering. It also considers the epistemic and ethical tensions involved in the ME diagnosis.

A Lonely Diagnosis

I have so far noted the alienation that people can feel when they are alone in the belief that their illness is real and physical, while being told otherwise. Friends often retreat and sufferers sometimes feel the need to socially withdraw from negativity. As symptoms worsen or fluctuate, the social and physical spaces patients inhabit shrink and their social connections reduce. ME takes its toll on an individual’s social life. To my knowledge, my research breaks new ground within the sociology of health and illness by explicitly addressing the loneliness and social isolation often experienced by people with CFS/ME. 

Kirsty: Yeah I’m isolated and limited. When people haven’t known what it (ME) is they have asked if it is life threatening and then I say no but it’s quality of life threatening because you have to change the way you live your life.

My findings show how the experience of loneliness is affected by the structural, and situational aspects of living with a chronic and disabling condition. Loneliness is integral to understanding how people with ME live with the condition. However, the lived experience of ME, chronic illness and disability is also important in furthering our understanding of the nuances of loneliness and social isolation.  

With generous funding from the Foundation for the Sociology of Health and Illness, I return to the University of Sheffield as the Mildred Blaxter Fellow, which will enable me to disseminate my research findings and pursue my interests in diagnosis and loneliness. I therefore look forward to seeing old faces and meeting new ones! 

References

• All-Party Parliamentary Group on Myalgic Encephalomyelitis (2022) Rethinking ME: A Report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis. Available at: https://appgme.co.uk/wp-content/uploads/2022/05/Rethinking-ME-a-report-by-the-APPG-on-ME-2022.pdf (Accessed 11 July 2022).
• British Medical Journal (2021) ‘Long Covid Has Resurfaced Tensions Over Treatment of Chronic Fatigue Syndrome’, 21 June. Available at: http://www.bmj.com/company/newsroom/long-covid-has-resurfaced-tensions-over-treatment-of-chronic-fatigue-syndrome/ (Accessed: 20 July 2022).
• National Institute for Health and Care Excellence (2021) Myalgic Encephalomyelitis (or Encephalopathy)/ Chronic Fatigue Syndrome: Diagnosis and Management. NG206. Available at: www.nice.org.uk/guidance/ng206 (Accessed: 20 July 2022).
• Norton, C. and Stone, I. (2020) ‘ME Sufferers Know Well the Effects of Long Covid’, The Guardian, 29 June. Available at: https://www.theguardian.com/world/2020/dec/29/me-sufferers-know-well-the-effects-of-long-covid (Accessed: 20 July 2022).
• Turner, H. (2021) ‘There’s Currently No Cure for Long Covid or ME – but Only One Has a Stigma Attached’, The Telegraph, 18 August. Available at: https://www.telegraph.co.uk/health-fitness/body/currently-no-cure-long-covid-one-has-stigma-attached/ (Accessed 20 July 2022).