Disability History Month - Long Covid
Echoes of Illness: What Does Long Covid Reveal about the History of Post-Viral Syndromes as Disabilities?
In March 2020, the World Health Organization declared Covid-19 a global pandemic. As the virus spread, claiming over 3 million lives in 2020 alone, a perplexing phenomenon emerged: some survivors experienced prolonged symptoms such as fatigue, brain fog, chronic pain, and breathing difficulties. Through patient activism, the condition known as 'Long Covid' was born, which is considered the first patient-driven diagnosis. While Long Covid seemed like a new phenomenon, similar post-viral symptoms have been documented in past epidemics, though they have largely faded from public consciousness.
This post will examine Long Covid as an "unknown but long-known" condition, drawing parallels to symptoms from earlier pandemics. It will also explore how medical professionals have historically used post-viral syndromes to reinforce gendered and class-based stigma, undermining sufferers' recognition as disabled. Finally, it will argue that disability studies must address its neglect of post-viral conditions to connect with other disabled groups who have fought for recognition. This will deepen our understanding of disability as a status that can be acquired through unequal exposure but also fluid, occupying contested and shifting legal ground.
Post-Viral Syndromes: ‘An Unknown and Long-Known Company’.
Covid-19 has brought post-viral syndromes into global focus, but these conditions have existed for centuries. During the Russian Flu (1889-1890), patients reported symptoms strikingly similar to Long Covid, including persistent fatigue, cardiac issues, and neurological disorders (Staub, Ballouz & Puhan, 2024). For example, in 1891, suffrage campaigner Josephine Butler described debilitating fatigue three months after contracting the flu, noting she could not read or write for more than half an hour without becoming "tired and faint" (Staub, Ballouz & Puhan, 2024:p.4). In 1895, a Swiss health survey of 700 physicians found that even mild cases had "slow and incomplete recovery" (Staub, Ballouz & Puhan, 2024:p.4). Similarly, during the 1918-1920 Spanish Flu, doctors reported "desperately slow" recoveries and chronic fatigue in some patients. Many were later diagnosed with 'neurasthenia,' described as an early form of chronic fatigue syndrome (CFS) (Staub, Ballouz & Puhan, 2024:p.5; Lian & Bondevik, 2015). In the early days of the Covid-19 pandemic, it was reported that symptoms of even "mild cases" would "come and go" (Davis, 2020). Felicity Callard (2020), a Long Covid patient and academic, argues that early pandemic reports—that described Covid-19 as a ‘mild’ or ‘severe’ infection—create a binary that undermine the experiences of people with Long Covid who do not recover.
Several epidemics in the 2000s, including Swine Flu and Ebola, left a proportion of survivors with post-viral syndromes, which should have signalled the potential emergence of Long Covid (Staub, Ballouz & Puhan, 2024). A notable example is the SARS-CoV epidemic (2002-2003), a cousin of Covid-19. A four-year study found that nearly 40% of SARS survivors reported persistent chronic fatigue, and 27% were later diagnosed with chronic fatigue syndrome (CFS) (Lam, 2009).
Post-viral illness has been a recurring theme throughout history, and its patterns are not hard to identify (Staub, Ballouz & Puhan, 2024). Early in the Covid-19 pandemic, experts like Dr. Anthony Fauci predicted post-viral disabilities, drawing on evidence from SARS (ME Action, 2024). Medical historians, including Mark Honigsbaum and Lakshmi Krishnan, noted similarities between the neurological disorders from the Russian Flu and Long Covid (Staub, Ballouz & Puhan, 2024). Yet, as the Covid-19 Inquiry reveals, the UK government failed to apply lessons learned from past epidemics like SARS (London School of Hygiene and Tropical Medicine, 2024).
Evans (2024) argues that there is a loss of collective memory of post-viral disabilities, partly due to a decline in influenza outbreaks that hindered public awareness. Despite this, evidence from earlier epidemics clearly indicated the risk of post-viral syndromes. Evans also suggests that seeing death as the primary pandemic harm obscures the long-term threat of disability. Like ‘shell shock’ evolving into ‘post-traumatic stress disorder,’ post-viral symptoms have often been repackaged into new diagnostic categories with little recognition of their historical roots (Evans, 2024).
Medical Misogyny and the History of Chronic Fatigue
The late 19th-century diagnosis of neurasthenia, often seen as an early form of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), medicalized "exhaustion" by turning it from a common experience into a formal diagnosis (Lian & Bondevik, 2015). Neurasthenia exemplifies how medicine often presents "value-neutral" biological explanations without considering the historical and cultural factors shaping diagnoses (Lian & Bondevik, 2015). This section explores how post-viral syndromes, including neurasthenia, ME/CFS, and Long Covid, are politicized and influenced by gendered and class-based assumptions about sufferers.
Initially, neurasthenia was seen as a disease of the "bright intellect," associated with overwork and intellectual activity, particularly among men (Lian & Bondevik, 2015:p.924). it was even considered a "badge of honour," reflecting superior sensibility in the professional classes (Lian & Bondevik, 2015:p.931). However, as physical explanations gave way to psychological ones, neurasthenia became feminised, with women disproportionately diagnosed because of their increasing participation in the workforce. This shift framed neurasthenia as a sign of personal failure rather than a societal consequence (Lian & Bondevik, 2015). As a result, the diagnosis became stigmatized, especially among women, who were blamed for not coping with the pressures of work and life (Lian & Bondevik, 2015).
The history of ME/CFS mirrors this shift. In 1955, a condition with similar symptoms—chronic fatigue and cognitive impairment—was identified in an outbreak at the Royal Free Hospital in London (Wessely, 1991). Initially treated as an organic disease, it was later reinterpreted as "hysteria" in the 1970s, partly due to the high prevalence of women among those affected. This framing continues today, with patients often labelled as "ambitious perfectionists" with poor coping skills (Anderson et al., 2012). CFS and ME are often used interchangeably due to disagreements about whether CFS is less stigmatising and more inclusive than ME (Wessely, 1991). A similar dynamic exists with disagreements in the naming of post-viral symptoms from Covid-19, where "Long Covid" coined by patients contrasts with the World Health Organization's term "Post-Covid-19 Syndrome" (Al-Aly, 2021).
Long Covid sufferers today report widespread disbelief from medical professionals, who question the reality of their symptoms (Ireson et al., 2022). This echoes the historical dismissal of women's health complaints, particularly those lacking clear physical evidence, and is tied to the enduring legacy of "hysteria" (Löwy, 2021). In an ironic repeat of past debates between mind and body, medical professionals continue to debate the origins of Long Covid, often repurposing individualistic arguments in ways that are deeply gendered and classed. Amid rising sickness absence in the UK, politicians criticize a "sick note culture" of "lazy" workers, overlooking the burden borne by key workers, many of whom contracted Covid-19 and developed post-viral disabilities (Inman, 2023; Mahase, 2024).
What Happens When ‘Us’ Expands? Disability Studies and Long Covid.
You might ask: what does disability have to do with post-viral illness? The answer is that many post-viral conditions, like Long Covid, meet the legal definition of disability under the Equality Act 2010, which includes physical and/or mental impairments lasting over a year and significantly impacting daily activities (United Kingdom Government, 2023). The Office for National Statistics (2023) reports that 1.2 million people in the UK have Long Covid for over a year, and 689,000 for over two years. Long Covid severely affects daily functioning (Nielsen et al., 2022), and recent studies show it impairs quality of life more than some advanced cancers (Hall, 2023). Yet, despite this, Long Covid is still not officially classified as a disability, unlike conditions like cancer, HIV, or multiple sclerosis (Geddes, 2022).
Long Covid, as one of the most researched health conditions in history, highlights how the concept of ‘disability’ itself is fluid and political. It shows that disability can be ‘acquired’ through unequal exposure to social and political conditions, such as the pandemic’s disproportionate impact on key workers. Long Covid also reveals the contested nature of disability: symptoms like post-exertional malaise are unpredictable and non-linear, and some people with Long Covid (Long Haulers) may not identify as disabled, especially when their symptoms are invisible or transient (Evans, 2024).
The emergence of Long Covid as a patient-driven diagnosis is a powerful example of advocacy. Through online platforms, Long Haulers campaigned for “research, recognition, and rehabilitation,” and medical professionals, using their biomedical knowledge to help bring Long Covid into the medical mainstream much faster than ME/CFS (Callard & Perego, 2021; Roth & Gadebusch-Bondio, 2022). This activism echoes the long-standing struggles of other disabled groups, like those with ME/CFS and HIV, for recognition. The disability studies movement, with its "nothing about us without us" ethos, emphasizes the need for disabled communities to be central in shaping policies that affect them (Evans, 2024).
Yet, as Katie Eyer asks, what happens when the “us” expands to include post-viral syndromes? What does it mean for disability politics and culture if these conditions are recognized as disabilities? The answer is unclear, but what’s certain is that the ongoing struggle for recognition is itself disabling for Long Covid sufferers. Additionally, failing to acknowledge the patterns of previous post-viral syndromes risks exacerbating disability in future pandemics. Recognizing post-viral conditions as disabilities could shift the focus of pandemic preparedness and advocacy toward more inclusive responses (Evans, 2024). For too long, chronic exhaustion has been re-labelled under different diagnostic terms—neurasthenia, CFS/ME, and now Long Covid. While these conditions arise from different infections, they share commonalities that should unite us in recognizing post-viral disability as a pressing issue across history.
References
Al-Aly, Z. (2021) The WHO is letting down long Covid patients. . 2021. The Guardian .
Anderson, V.R., Jason, L.A., Hlavaty, L.E., Porter, N. & Cudia, J. (2012) A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient education and counseling. 86 (2), 147–155. doi:10.1016/j.pec.2011.04.016.
Callard, F. (2020) Very, very mild: Covid-19 symptoms and illness classification |. 8 May 2020. Somatosphere . http://somatosphere.net/2020/mild-covid.html/?format=pdf [Accessed: 2 May 2022].
Callard, F. & Perego, E. (2021) How and why patients made Long Covid. Social Science and Medicine. 268. doi:10.1016/J.SOCSCIMED.2020.113426.
Davis, N. (2020) Lingering and painful: the long and unclear road to coronavirus recovery. 1 May 2020. The Guardian. https://www.theguardian.com/world/2020/may/01/lingering-and-painful-long-and-unclear-road-to-coronavirus-recovery-long-lasting-symptoms [Accessed: 7 November 2024].
Evans, N.G. (2024) Long Covid and Disability: Navigating the Future. In: J.M. Reynolds & M.E. Gary (eds.). Disability Justice in Public Health Emergencies. Routledge. p.
Geddes, L. (2022) Alarm after EHRC says long Covid should not be treated as disability. 9 May 2022. the Guardian . https://www.theguardian.com/society/2022/may/09/alarm-after-ehrc-says-long-covid-should-not-be-treated-as-disability [Accessed: 15 May 2022].
Hall, R. (2023) Long Covid can impair quality of life more than advanced cancers, study says. 8 May 2023. The Guardian. https://www.theguardian.com/society/2023/jun/08/long-covid-impact-quality-of-life-cancer-study [Accessed: 12 November 2024].
Inman, P. (2023) Number of workers taking sick leave hits 10-year high. 26 September 2023. The Guardian. https://www.theguardian.com/money/2023/sep/26/number-of-workers-taking-sick-leave-hits-10-year-high [Accessed: 8 November 2024].
Ireson, J., Taylor, A., Richardson, E., Greenfield, B. & Jones, G. (2022) Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community. Health Expectations. 25 (4), 1753–1765. doi:10.1111/hex.13518.
Lam, M.H.-B. (2009) Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors. Archives of Internal Medicine. 169 (22), 2142. doi:10.1001/archinternmed.2009.384.
Lian, O.S. & Bondevik, H. (2015) Medical constructions of long-term exhaustion, past and present. Sociology of Health & Illness. 37 (6), 920–935. doi:10.1111/1467-9566.12249.
London School of Hygiene and Tropical Medicine (2024) Expert Comment – First report from the UK COVID-19 Inquiry published. 19 July 2024. https://www.lshtm.ac.uk/research/centres/centre-epidemic-preparedness-and-response/news/427401/expert-comment-first-report-uk-covid-19-inquiry-published [Accessed: 6 November 2024].
Löwy, I. (2021) Long Covid, chronic fatigue syndrome and women: the shadow of hysteria. 25 May 2021. Somatosphere. http://somatosphere.net/2021/long-covid.html/ [Accessed: 3 May 2022].
Mahase, E. (2024) Sunak is accused of “harmful” rhetoric amid plans to remove sick note responsibility from GPs. BMJ. q914. doi:10.1136/bmj.q914.
ME Action (2024) Long Covid & ME: Understanding the Connection. 2024. https://www.meaction.net/long-covid-me-understanding-the-connection/ [Accessed: 7 November 2024].
Nielsen, T.B., Leth, S., Pedersen, M., Harbo, H.D., Nielsen, C.V., Laursen, C.H., Schiøttz-Christensen, B. & Oestergaard, L.G. (2022) Mental Fatigue, Activities of Daily Living, Sick Leave and Functional Status among Patients with Long COVID: A Cross-Sectional Study. International Journal of Environmental Research and Public Health. 19 (22), 14739. doi:10.3390/ijerph192214739.
Office for National Statistics (ONS) (2023) Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 2 February 2023. 2 February 2023. Office for National Statistics. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/2february2023 [Accessed: 1 November 2023].
Roth, P.H. & Gadebusch-Bondio, M. (2022) The contested meaning of “long COVID” – Patients, doctors, and the politics of subjective evidence. Social Science & Medicine. 292, 114619. doi:10.1016/J.SOCSCIMED.2021.114619.
Staub, K., Ballouz, T. & Puhan, M. (2024) An Unwanted but Long-Known Company: Post-Viral Symptoms in the Context of Past Pandemics in Switzerland (and Beyond). Public Health Reviews. 45. doi:10.3389/phrs.2024.1606966.
United Kingdom Government (2023) Definition of disability under the Equality Act 2010. 2023. Gov.UK. https://www.gov.uk/definition-of-disability-under-equality-act-2010#:~:text=You%27re%20disabled%20under%20the,to%20do%20normal%20daily%20activities. [Accessed: 1 November 2023].
Wessely, S. (1991) History of postviral fatigue syndrome. British Medical Bulletin. 47 (4), 919–941. doi:10.1093/oxfordjournals.bmb.a072521.