STEFFI SHARMA

Wes Streeting MP

Secretary of State for Health and Social Care

39 Victoria Street London

SW1H 0EU

Dear Secretary of Health and Social Care,

I write to you with an urgency to address the needs of those suffering from myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS). Despite being recognised as a diagnostic entity for over three decades, ME/CFS remains poorly understood by the medical community. ME/CFS is profoundly debilitating for those affected, yet the pervasive lack of understanding surrounding the illness often results in prolonged challenges for patients seeking validation and adequate care within the NHS. As a medical anthropology student, I am encouraged to critically analyse the multifaceted nature of health and illness by examining power dynamics, social constructions of illness and biases within healthcare systems. I urge you to prioritise the development and implementation of a dedicated NHS protocol for ME/CFS by elucidating the reasons behind the frequent oversight of conditions such as ME/CFS and demonstrating how anthropological approaches can be leveraged to create more empathic and accessible healthcare, ensuring that people with ME/CFS genuinely feel heard and seen. 

What is ME/CFS?

ME/CFS is a complex and disabling illness characterised by overwhelming fatigue and post-exertional malaise as well as other symptoms including problems with sleep, thinking and concentration. Individuals with ME/CFS often have difficulty in doing day-to-day tasks and are frequently bed- or house-bound for long periods of time (CDC, 2023). Symptoms of ME/CFS, however, vary considerably from person to person. ME/CFS affects an estimated 250,000 people in the UK with around two times as many women affected as men. The condition can affect individuals of all ages (NICE, 2021). Despite its pervasive and debilitating nature, individuals with ME continue to have their experiences dismissed and endure ongoing neglect in care and support from the NHS. 

ME/CFS can occasionally lead to death. The severity of ME/CFS’s impact became evident to me upon encountering the tragic case of Maeve Boothby-O’Neill, the 27-year-old who died from ME/CFS in 2021. Her untimely death starkly highlighted the severe neglect in her care, support and diagnosis by the NHS. Learning about her story filled me with profound sadness and anger. How could such failures occur, that too within one of the world’s most esteemed healthcare systems? This incident prompted me to research more about this condition, unveiling the severity of ME/CFS and uncovering numerous accounts of sufferers whose experiences were utterly neglected, overlooked and disregarded by the NHS. A report by the Office for National Statistics (ONS) revealed that 62 deaths between 2017 and 2021 were partly or fully attributable to ME/CFS (ONS, 2023). Following Maeve’s death, a coroner told The Times that hospitals have “no services for severe ME patients” (Humphries, 2023). In another alarming report, it was revealed that two ME/CFS patients receiving care at an NHS hospital feared that they might “die from starvation” (Lay, 2023). These cases are not merely isolated incidents limited to local hospitals but represent a failure on a national scale, highlighting a significant systemic issue that, if left unaddressed, could lead to severe consequences, as tragically highlighted in the case of Maeve.       

A 2023 FOI report by the non-governmental organisation Action for ME revealed that thousands of ME/CFS patients continue to be failed by “shockingly poor” and “patchy provision” of NHS care with fewer than one in four NHS trusts and ICBs tracking their ME/CFS patients (Action for Me, 2023). Upon reading these reports, it is tempting to assign blame to doctors and other healthcare professionals for such failures. However, the issue extends beyond medical professionals; it stems from inadequate medical training on ME/CFS, leaving healthcare professionals ill-prepared to manage such cases. A study on medical school education on ME/CFS showed that of the 32 schools examined, only 41% taught the subject. Additionally, of the 59% of schools that did cover ME/CFS, instruction was typically delivered not by experts of the illness but rather, by multiple medical specialists. These sessions often consisted of lectures of merely an hour duration and with minimum to no exposure to patients with the illness (Muirhead et al., 2021). 

An unknown aetiology 

One reason why ME/CFS is so dismissed is because it is an “incomplete medicalised condition” with no agreed upon biomarkers, consensus on aetiology and case definition, as a result, ME/CFS is often classified as a psychosomatic condition (Rogers, 2022), perceived as being “all in the head”. The constant scepticism surrounding the legitimacy of ME/CFS means that research on the illness has been severely underfunded. This underfunding not only obstructs the possibility of achieving a consistent and comprehensive understanding of ME/CFS but also prevents researchers from finding clear biomarkers of the disease, crucial for accurate diagnosis and treatment. As a result, individuals grappling with ME/CFS face immense challenges in gaining recognition and support for this debilitating condition (Rogers, 2022). One study revealed the struggles encountered by ME/CFS patients due to the unknown aetiological nature of the illness. Many individuals recounted distressing encounters with their GPs, who frequently expressed uncertainty or lack of knowledge regarding the condition, leaving patients feeling invalidated. Shockingly, one participant reported that she had never encountered a healthcare provider who understood ME/CFS. For another participant, the relentless pursuit for a diagnosis only served to exacerbate her condition (Arroll and Senior, 2008). In February 2024, a study conducted by the National Institute of Neurological Disorders and Stroke (NINDS) was the first to demonstrate a possible link between imbalances in brain activity and fatigue, highlighting the multiple factors which could contribute to ME/CFS (Walitt et al., 2024). The study underscores the critical need for funding to support research aimed at establishing a biological basis for the illness. 

Non-recognition and de-legitimisation 

The lack of a clear biological basis as well as the refusal to recognise ME/CFS as a ‘real’ illness denies ME/CFS sufferers their social value as both people and patients – this non-recognition of ME/CFS patients and of the ME/CFS illness generates their delegitimisation in social space (Gimeno Torrent, 2022). Delegitimisation, as defined by Kleinman (1992), is the systematic disconfirmation of one’s perceptions and definitions of illness (Kleinman, 1992). Delegitimisation stands as one of the most frequent complaints voiced by ME/CFS sufferers, exacerbating their already profound suffering (Ware, 1992). In a study examining the lived experiences of individuals with ME/CFS, participants recalled delegitimising experiences with GPs who offered minimal support and often dismissed their symptoms, attributing it to tiredness or a lack of stamina – individuals stated that this made them feel as though their problems were trivial.  Participants described persistent debates and struggles to obtain a formal diagnosis, likening their experience to a constant “battle” for recognition. These delegitimising experiences extended beyond the medical settings, with sufferers experiencing rejection even from close family and friends. Such experiences are as great a burden for sufferers as the illness itself, contributing to a decreased self-esteem and sense of self (Dickson et al., 2007). 

While it is crucial to conduct research aiming to establish a biological basis for ME/CFS to combat stigma and enhance understanding, it is essential to recognise that solely relying on the presence of a biological marker may exclude individuals whose symptoms cannot be explained by biomarkers. 

Importance of lived experience

Biomedicine tends to categorise and treat symptoms as either physical or mental (Scheper-Hughes and Lock, 1987). Within this framework, illnesses are those whose presence can be traced, confirmed through their observable physiological manifestations. Conditions not traceable to an abnormality of the body are attributed to the mind and because of the primacy of matter, are seen as ‘not real’ (Ware, 2007). The narrow category of biomedicine often results in healthcare professionals failing to understand the descriptions of symptoms provided by ME/CFS sufferers, leading to frequent dismissals and misguided advice that can be unhelpful and/or outright detrimental to their well-being. A study examining the lived experiences of ME/CFS sufferers uncovered the numerous challenges they face in articulating their symptoms to healthcare professionals due to the multiple and frequently overlapping nature of these symptoms. Descriptions often revolved around sensations feeling “wrong” and “weird”, an inexplicable sort of tiredness that was not “normal”. For example, one individual expressed feeling “tired, exhausted, muscles were hurting. Felt poisoned, more than ill, horrible feeling all over” (2021, p.6). Another participant reflected, “In hindsight, it wasn’t a normal type of feeling, I just didn’t have the words or assertiveness to convince anyone” (2021, p.6). For these individuals, the common advice from healthcare professionals was to engage in exercise and maintain activity levels, a course of action that the sufferers reported would usually exacerbate their symptoms (Strassheim et al., 2021). Cohn (1999) argues that while sufferers recognise the validity of biomedical ideas, they also reject them for failing to acknowledge their subjective experience. Cohn suggests that an approach which focuses on the lived experiences of ME/CFS patients challenges biomedical claims to knowledge and she insists that the only claim to reality of an illness such as ME/CFS has to be based on the experience itself (Cohn, 1999). Understanding the experience of ME sufferers requires an exploration of their local worlds and social contexts, as these factors significantly shape their encounters with the illness. Ware (2007) argues that it is crucial to conceptualise ME/CFS in a framework which connects these local social worlds with the distress and bodily sensations experienced by individuals affected by the illness. Her study on the experiences of ME/CFS sufferers in the United States highlighted that many individuals reported leading extremely hectic lives before the onset of ME/CFS. They described themselves as “workaholics”, juggling multiple responsibilities simultaneously and leading an exhausting lifestyle. One individual recalls his life prior to the onset of ME/CFS: “I was working probably 60 hours a week and some weeks a lot more. There wasn’t enough time to get everything done” (2007, p.64). Other individuals reported similar lifestyles characterised by overworking and limited personal time. The author argues that local worlds mirror broader socio-cultural processes, suggesting that individuals who develop ME/CFS may become trapped by social norms which normalise exhaustion as a way of life. By connecting local contexts to the illness, many individuals chose to adopt healthier lifestyles, prioritising personal well-being, rest and relaxation. This study highlights the importance of prioritising social worlds in understanding ME. The condition may reflect an embodied manifestation of distress, a very real illness mediated by local life worlds (Ware, 2007). 

What’s next?

The interim delivery plan for ME/CFS by the government’s Department of Health and Social Care (DHSC) acknowledges several crucial issues related to research, attitudes and education surrounding the illness, proposing several improvements (DHSC, 2023). However, the plan has some limitations as it fails to address significant areas. 

Shortcomings of the delivery plan: 

• It is not clear whether the e-learning modules on ME/CFS would be compulsory during medical school training – if not, they should be (Johnston, 2023). Additionally, the plan states that direct patient experience of ME/CFS in medical schools should be encouraged by NHS England – again, this should not be merely encouraged, but rather made a compulsory aspect of medical training. 
• There is no acknowledgment of the severe consequences of medical professionals’ poor knowledge on ME/CFS, as seen in the case of Maeve Boothby-O’Neill (Johnston, 2023). These more severe consequences need to be acknowledged to prevent such incidents from occurring in the future. 
• Underfunding, one of the main problems surrounding ME/CFS, is largely overlooked – blame is placed on the researchers and the research community rather than a lack of central funding on the disease. There is no strategy of how to keep researchers in the field nor is there any dedicated funding to encourage researchers to specialise in ME/CFS research (ME Research UK, 2023). The problem of central underfunding needs to be foremost addressed if we aim to bolster research efforts on ME/CFS.
• ME/CFS patients’ lived experiences in shaping illness experiences and outcomes are dismissed – the plan over prioritises biomedical approaches to ME/CFS. More priority needs to be given to patients’ lived experiences of living with ME. As evidenced, these experiences are shaped by social contexts. 
• There is no mention of women and/or minority groups and how factors such as gender, race, class and disability status intersect to shape experiences of illness. Recognising intersectionality is crucial to addressing disparities and tailoring support services. 

It is imperative to address these limitations as the next step forward.

Yours sincerely, 

Steffi Sharma

References

(2023a) Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales: 2017 to 2021. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/adhocs/1139mentionsofpostviralfatiguesyndromebenignmyalgicencephalomyelitisdeathsregisteredinenglandandwales2017to2021. 

(2023b) My full reality: the interim delivery plan on ME/CFS. Available at: https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan/my-full-reality-the-interim-delivery-plan-on-mecfs#research-2. 

(2023c) My full reality: the interim delivery plan on ME/CFS – Our response part 2. Available at: https://www.meresearch.org.uk/interim-delivery-plan-our-response-2/.

Action for ME (2023) FOI Report reveals shocking lack of specialist care. Available at: https://www.actionforme.org.uk/news/foi-report-highlights-shocking-lack-of-specialist-care/. 

Arroll MA and Senior V (2008) ‘Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: An interpretative phenomenological analysis’. Psychology & Health 23(4): 443-458.

Centres for Disease Control and Prevention (2023) What is ME/CFS?. Available at: https://www.cdc.gov/me-cfs/about/index.html.

Cohn S (1999) ‘Taking time to smell the roses: Accounts of people with chronic fatigue syndrome and their struggle for legitimisation’. Anthropology & Medicine 6(2): 195-215.

Dickson A, Knussen C and Flowers P (2007) ‘Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome’. Psychology & Health 22(7): 851-867.

Gimeno Torrent X (2022) ‘The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study’. Health Care for Women International 43(1-3): 5-41.

Humphries W (2023) Hospitals have no services for most severe ME cases, coroner told. Available at: https://www.thetimes.com/uk/healthcare/article/hospitals-have-no-services-for-most-severe-me-cases-coroner-told-j3q7v7k9p#:~:text=Hospitals%20have%20no%20services%20for%20most%20severe%20ME%20cases%2C%20coroner%20told,-Times%20journalist%20seeks&text=The%20NHS’s%20inability%20to%20care,chief%20has%20told%20an%20inquest. 

Johnston K (2023) Response to the government’s interim plan for ME/CFS. Available at: https://mecfs-med-ed.org/2023/09/09/response-to-the-governments-interim-plan-for-me-cfs/. 

Lay K (2023) ME patients ‘risk dying of starvation’ under NHS care. Available at: https://www.thetimes.co.uk/article/me-patients-risk-dying-of-starvation-under-nhs-care-kkdwjbkl2#:~:text=The%20families%20of%20two%20women,University%20Healthcare%20NHS%20Foundation%20Trust.

Muirhead N, Muirhead J, Lavery G, et al. (2021) ‘Medical School Education on Myalgic Encephalomyelitis’. Medicina (Kaunas) 57(6).

National Institute for Health and Care Excellence (2021) Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. Available at: https://www.nice.org.uk/guidance/ng206/chapter/Context.

Rogers EL (2022) ‘Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS’. Medical Anthropology Quarterly 36(3): 412-428.

Scheper-Hughes N and Lock MM (1987) ‘The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology’. Medical Anthropology Quarterly 1(1): 6-41.

Strassheim V, Newton JL and Collins T (2021) ‘Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’. Healthcare (Basel) 9(2).

Walitt B, Singh K, LaMunion SR, et al. (2024) ‘Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome’. Nature Communications 15(1): 907.

Ware NC (1992) ‘Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome’. Medical Anthropology Quarterly 6(4): 347-361.

Ware NC (2007) ‘Society, Mind and Body in Chronic Fatigue Syndrome: An Anthropological View’. Ciba Foundation Symposium 173 ‐ Chronic Fatigue Syndrome. pp.62-83.

Image: Blue ribbon for ME/CFS awareness, Designed by Freepik