Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
For two years, from the age of fifteen, every hour of my life was recorded, colour-coded, on an ‘energy chart’. Blue signified sleep and was permitted only from the hours of 10.30pm to 7.30am. Rest was green – and rest meant ‘proper rest’: lying in the dark, thinking of nothing. A quarter of each box on the chart had to be shaded in green: fifteen minutes of each hour of each day. High energy activity – eating, thinking, feeling, talking, bathing – was coloured in red, and was severely rationed: one hour, then two, then three. Low energy activity was yellow. For an activity to qualify as low energy, it had to require just enough concentration to keep me awake, but not too much that I might find it in any way interesting or engaging. Mostly, this consisted of watching films I’d seen so many times before, I could recite them.
I could write, by means of an explanation, that my life was lived according to energy charts because I had ME (or myalgic encephalomyelitis, also known – albeit controversially – as ‘chronic fatigue syndrome’). However, I want to be more specific. My life was lived according to energy charts because, when I became ill after a flu-like virus in September 2008, the clinicians at the NHS Fatigue Clinic I attended believed that children (as well as adults) could cure themselves of their ME by changing their behaviour and their beliefs about their illness. For example, by limiting when and for how long I was allowed to sleep, I was supposed to reverse my insomnia by developing better ‘sleep hygiene’. Over time, I became too ashamed to admit my failure to become more hygienic, and stopped reporting how little I’d been sleeping, the long stretches of blue on the chart a lie covering nights lying awake, so sleep-deprived I hallucinated figures at the foot of my bed.
When my symptoms worsened, the clinicians examined my energy chart to find out why. Once, the paediatrician identified the cause as an out-of-place slither of red (representing barely ten minutes of tears, because I had felt so desperately unwell) which had taken me over that day’s allowance for high energy activity. Crying, it was explained to me, required lots of energy; it was normal that I would experience ‘payback’ after indulging in such needless over-exertion. In short, I didn’t feel worse because I had an illness: I felt worse because I had failed to control my body, my emotions, my symptoms. The route to recovery, I was told, was through regaining control over – and then gradually increasing – the amount of high energy activity I was doing. But I couldn’t sustain the increases. Over a year, I built up from ten minutes at school a day, to almost full time – but, again and again and again, experienced deterioration preceded by increasingly frequent and humiliating collapses (in classrooms, in corridors, in exams). The Fatigue Clinic had told me it was a case of fake it ’til you make it, but apparently I could do neither. I couldn’t live up to expectations; I failed to make myself better.
Two scenes still stand out in my mind, from the films I watched on repeat for years – the films, drawn from my parents’ DVD collection, that qualified as low energy (‘yellow’) activity. In the first, Nicole Kidman’s character in Moulin Rouge sings on top of a giant elephant: ‘One day I’ll fly away, leave all this to yesterday…’ In the second, Meryl Streep’s Clarissa Dalloway in The Hours, closes doors and turns off lights as the voice over recites: ‘to look life in the face […] to know it, to love it, for what it is; and then, to put it away’. I rewound these scenes over and over again, fantasising of a life after ME – of flying away, putting it away. These images and metaphors of endings sustained me in a way which, in retrospect, feels poignant. There is deep trauma in becoming so unwell at such a young age – but there is deeper trauma in being made to feel that this was your own fault. I am one of a tiny percentage of people with ME who are lucky enough to recover. Still, the experience has woven itself into the fabric of my life; these are not memories that are easily unpicked or can simply be put away.
I often wonder what my fifteen-year-old self would make of the decisions I’ve made. Far from flying away, I spend my working life thinking and theorising about ME and other so-called ‘medically unexplained’ illnesses. It is the greatest privilege: I get to spend time with, and speak to, utterly brilliant people, who live with such suffering, with such grace and courage. But it is also the greatest pain. I witness this suffering with a deep sense of humility: I don’t know why I get to be on this side of the screen; our roles could, just as easily, have been reversed.
I do this work because I am still sustained, as I was as a teenager, by images of endings, and by the possibility of a different, brighter future. I hold onto hope that, one day, health research will be done differently: that we will change our approach to illnesses, like ME, for which we don’t (yet) have biomarkers; and that we will look at, and learn from, our mistakes. The story of ME is both a natural and a man-made disaster: a perfect storm – perhaps a gene-environment interaction – triggering a disease (Genetics Delivery Team et al, 2025), and subsequent failures within health research to approach this disease, and those who live with it, with curiosity and compassion. The Fatigue Clinic I attended as a teenager treated me as they did because they were following guidance that was informed by the conclusions of research studies and the claims made in journal articles. These articles, for example, proposed that ME was a ‘real but reversible condition that the patient may influence by practical self-help’ – and advised clinicians that, while they should emphasise ‘the patient’s role in recovery, care must be taken to avoid implying that the patient is to blame for becoming ill’ (we were, of course, to blame for staying ill) (Sharpe, 1997, p. 360). There was no robust evidence to support this claim, and the author of this article admitted that this was a ‘pragmatic approach without theoretical foundation’ (National Archives, FD 23/4553). While I was being encouraged by clinicians to reverse my symptoms by challenging my unhelpful beliefs and addressing my fear-avoidance behaviour, proponents of this model were acknowledging that there was no ‘solid proof’ that a patient’s beliefs and behaviours interacted so as to perpetuate their symptoms (Deary et al, 2007, p. 788). ‘This is not’, as George Monbiot wrote last year, ‘how science should work. Beliefs should be based on evidence.’
There is a different way to do health research. This is the promise that I see in the medical humanities, and that I have witnessed at Durham University’s Institute for Medical Humanities, as both a doctoral and postdoctoral researcher. The medical humanities offers a new vision for health research, which holds lived experience at the heart of the research process. What makes this vision so compelling – and, I believe, so urgently necessary – is in its commitment to move beyond assumptions, theories, and belief systems and to ground discovery in what people who live with illnesses experience and express. By attending to these experiences, and by making visible and palpable the symptoms and suffering, we can get closer to understanding what a disease might be and how we can better support those who live with it. The medical humanities draws upon creative and critical methods from the arts, humanities and social sciences – methods that encourage us to sit with uncertainty and (as Jen Brea put it) to approach the great vastness of all that we do not know ‘with a sense of wonder’ (Brea, 2017). It holds that we can improve health policy and practice by illuminating experiences that are hidden: marginalised, unacknowledged, or invisible. Fundamentally, it models an approach to health research that recognises the expertise of those with lived experience, and that responds to suffering with care and compassion – something which, as all of us who live and have lived with ME know, has the power to be profoundly transformative.
About the author
Dr Katharine Cheston is Mildred Blaxter postdoctoral fellow in the Department of Sociology and Institute for Medical Humanities, Durham University. Since March 2025, she has worked with Action for ME to redesign their Big Survey, as part of a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities. You can find more information about Action for ME’s research work on their website. The Big Survey will launch at 11am on Monday 13 October; you can sign up to be sent a link to the survey, as soon as it opens.
Acknowledgements
Katharine’s current programme of postdoctoral work is supported by the Foundation for the Sociology of Health and Illness. The Big Survey work has been supported by the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities, Durham University which has been funded by Wellcome under grant reference 226798/Z/22/Z.
References
Brea, Jennifer, ‘What happens when you have a disease doctors can’t diagnose’, TED, 17 January 2017 https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose [accessed 25 Sept 2025].
Deary, Vincent, Trudie Chalder, and Michael Sharpe, ‘The Cognitive Behavioural Model of Medically Unexplained Symptoms: A Theoretical and Empirical Review’, Clinical Psychology Review, 27.7 (2007), pp. 781–97.
Genetics Delivery Team et al, ‘Initial Findings from the DecodeME Genome-Wide Association Study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’, preprint, Genetic and Genomic Medicine, 8 August 2025.
Monbiot, George, ‘“You Don’t Want to Get Better”: The Outdated Treatment of ME/CFS Patients Is a National Scandal’, The Guardian, 12 March 2024 https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services [accessed 25 Sept 2025].
The National Archives, Kew, ‘Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies’, 1988-1997, Ref: FD 23/4553.
Sharpe, Michael, ‘Cognitive Behavior Therapy for Functional Somatic Complaints’, Psychosomatics, 38.4 (1997), pp. 356–62.
