15.05.2025
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Living with a nightmare
Why has long Covid gone unrecognised, untreated and dismissed as a psychosomatic illness? James Linney looks at the problems of a medical system beset with chronic underfunding and without democratic control
It is only five years on from the Covid-19 pandemic, but already memories of those times of mass hospitalisations, daily death counts, social distancing, furloughing, etc are taking on an unreal, dream-like feeling. This is perhaps exacerbated by the fact that governments across the globe are doing their best to pretend it never happened. The death of over seven million people, it would seem, does not provide enough motivation to encourage them to work cooperatively towards ensuring another such outbreak does not result in similar devastation.
Of course, in reality, Covid is still very much with us. People are still grieving the loss of loved ones; there are still significant numbers of circulating infections and the regular emergence of new variants. Thankfully, the combination of the continued effectiveness of vaccinations and the fact that newer strains result in less severe symptoms (so far) means that currently acute infections are mild and the immediate global risk remains low. But we are only a minor, more deadly mutation of the virus away from being thrust back into the horror show of 2020.
There is a group of people for whom the devastating legacy remains a living nightmare: people suffering with long Covid - it is estimated that globally as many as 400 million people are living with it.1 According a survey in the UK last year, two million people have self-reported as experiencing long Covid symptoms.2 Of these, 1.5 million state that their symptoms adversely affect their day-to-day functioning. Despite this huge number being affected, the already inadequate resources and care on offer for people living with long Covid have started to be withdrawn. A study recently found that of the 120 long Covid clinics in operation in the national health service in 2022, only 46 now remain,3 with further closures likely in the near future. Despite Labour’s promises to reinstate funding within the NHS, huge numbers of people are being abandoned, left without help and living with a chronic, severely disabling condition.
It is worth looking at how people with long Covid have been let down from the start by medical institutions and consider what this mistreatment tells us about how certain marginalised groups - and the working class in general - are still excluded from engaging meaningfully in medical science.
Symptoms
The World Health Organisation defines long Covid as “the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least two months with no other explanation”.4
Long Covid is a post-viral syndrome, in that certain symptoms persist after the initial infection and contagious phase. How it affects people varies widely. The more severe and dominant symptoms tend to be profound fatigue - which classically becomes worse following physical or mental exertion - shortness of breath and cognitive impairment. But there are many other potential symptoms, such as dizziness, palpitations, sleep disturbance, chronic pain, loss of or change in smell or taste, headaches, among many others.
Long Covid can be complicated by organ damage that occurred in the ‘acute infective’ phase, such as lung clots or damage to kidneys, heart, bowels or lung tissue. However, the degree of acute Covid infection does not always correlate well with the severity of the symptoms - meaning that some who only experienced a mild acute infection can have life-changing symptoms.
The course of the illness also varies from person to person. For most, it will have started soon after the acute infection. Some experience a few weeks of a ‘honeymoon’ period, where they feel they are improving before long Covid symptoms develop. The majority will experience several months of often severe symptoms, but will slowly recover (partially or fully). However, for some, the condition does not show much improvement, or they suffer severe relapses. Millions live with this condition without any idea if they will recover.
It is important to emphasise that, although people suffering with long Covid are described as having ‘fatigue’ and ‘brain fog’, these terms do a disservice to the severity of their suffering. Often, the fatigue means people are unable to function independently on a day-to-day basis, struggling to leave the house and relying on carers for basic tasks like shopping or self-care. The ‘brain fog’ can mean a devastating impairment of cognitive processing and memory - similar to that experienced by people with mild to moderate dementia.5 People with these symptoms are often unable to work and become increasingly reliant on family members for care. They often become very isolated, which unsurprisingly has a devastating impact on their mental health.
People with long Covid are not only having to deal with their illness and disability in the context of the recent defunding of their care: they also often have to struggle to be heard and taken seriously by the medical profession. There are still many who doubt the truth of the disease. In her recent bestselling book, The age of diagnosis, Dr Suzanne O’Sullivan, a UK-based neurologist, makes the case for long Covid being a psychosomatic illness. That is, instead of having any real biological basis, it leaves people projecting historical stress or trauma onto the diagnostic label of long Covid in order to subconsciously validate their own suffering.
O’Sullivan’s views are shared by other influential medical and mental health professionals, who prefer to believe that instead of suffering from a multi-organ, post-viral syndrome, millions of people are sharing some kind of mass hysteria - not so much making up their symptoms, but misinterpreting mental suffering as long Covid.
Suffering
Let me be clear: people who suffer from mental health conditions can experience severe physical symptoms and in no way should their suffering be seen as any less valid. In fact there is not in reality a black-and-white separation between psychiatric and biological conditions: the situation is more nuanced. For example, people with anxiety suffer both psychological and physical effects, driven by stress hormones that the body releases. But O’Sullivan’s dismissal of patient experiences is contrary to the most robust, up-to-date research. It amounts to a kind of medical gaslighting.
This distrust and disbelief by some medical professionals has a previous precedent. Another illness sharing similar symptoms with long Covid is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) - a chronic, serious debilitating illness with symptoms of extreme tiredness and cognitive impairment.
Guardian journalist George Monbiot, who himself has suffered from long Covid, was drawn by his own experience of being dismissed to write about how ME/CFS sufferers are also mistreated - a situation he called “the greatest medical scandal of the 21st century”.6 He discussed how ME/CFS sufferers were also told their condition was “all in their head”, and how this psychosocial approach became embedded in research and government policy.
One prominent study expounding these views was the 2011 PACE trial, which concluded that ME/CFS sufferers should be treated with graded exercise therapy (GET) and cognitive behavioural therapy.7 It was later revealed that the study’s methodology was profoundly flawed, and its conclusions biased. GET, it turns out, is actually very harmful for people with ME/CFS, and its recommendation has now been withdrawn. But the damage had already been done - in the loss of patient trust and the persistent belief that ME/CFS sufferers simply need to change their attitude, exercise more and generally pull up their socks.
The PACE trial was partly funded by the Department for Work and Pensions, and it is no coincidence that one of its legacies is the idea that people with chronic illnesses are ‘harmed’ by being offered financial support and should be encouraged to ‘get back to work’.
Now, the same group of influential professionals is trying to reframe long Covid as purely psychosomatic and therefore equally undeserving of long-term support or benefits. One such person is Michael Sharpe, professor of psychological medicine at the University of Oxford and founder of a long Covid clinic, who has claimed that long Covid could be triggered in psychologically vulnerable people simply by reading about it. For insurance companies, which benefit from long Covid not being recognised as a chronic disabling illness, this is just what they were looking for.
History
To understand how we got here, it helps to consider how long Covid originated and its journey to gradual recognition.
‘Long Covid’ was first used by Elisa Perego, an academic from Lombardy, Italy - an early Covid-19 hotspot - who tweeted the phrase in May 2020 to describe her persisting symptoms. That term was quickly picked up and shared by a growing social media community with similar experiences.
This grassroots patient-led movement has historical precedents. In 1975, in Lyme, Connecticut, USA, people started developing severe neurological symptoms. After years of being dismissed by doctors, patient-driven research revealed the cause to be Borrelia burgdorferi, a tick-borne virus - now known as Lyme disease.
The dismissal of patient experience is often justified because it is not seen as ‘proper’ science. While patient reports are not the same as double-blind, randomised controlled trials, they should not be dismissed. When large numbers of people report unexplained symptoms, doctors and researchers should take their concerns seriously.
Early in the pandemic, the number of people reporting symptoms beyond the expected two weeks made it hard to ignore. Many of them were medical professionals themselves, exposed on the front lines. Even so, the medical and research response has been slow. Long Covid does not have a single diagnostic test. Specialist investigations exist, but are expensive and not widely available. Its symptoms are often vague and variable, making diagnosis difficult and delayed.
Modern healthcare systems are not well set up to deal with patients with complex problems. Even before the NHS’s current staffing and funding crisis, most GPs had only 10 minutes per consultation - barely enough time to address straightforward issues, let alone multifaceted physical and mental health conditions.
Another reason for resisting the recognition of long Covid as a distinct disease is the lack of a clear underlying cause. Several theories are under investigation: persistent viral proteins, latent viral reactivation, autoimmune responses and chronic inflammation. All of these may help explain the multi-systemic symptoms and the lack of a ‘one size fits all’ treatment.
New tests, such as functional MRIs and immunological assays, may help in diagnosis. These have given weight to the evidence that there are real biological, pathological processes occurring: studies have identified that people with long Covid were twice as likely to have these viral remnants in their blood as people with no lingering symptoms,8 that there are persisting inflammatory processes in the brain9 and that people with long Covid show evidence of mitochondrial dysfunction.10
But effective treatments remain elusive. For now, symptom management is the focus, and the most beneficial approach for many patients remains simple: being listened to, supported and allowed time to rest. Doctors can struggle with uncertainty. Faced with illnesses they cannot fix, some may reject patients’ experiences rather than admit gaps in their knowledge. This tendency - disbelieving patients and causing further harm - is a systemic issue.
Historically, medicine emerged from the petty bourgeoisie and was built to protect privilege. Until the 1960s, being comfortably well-off, white and male was a virtual requirement to become a doctor. This bred a culture rife with chauvinism, racism and disdain for the working class, who were often treated with condescension or disregard.
Of course, modern medicine has evolved. The NHS now includes a diverse workforce, with many health professionals striving to provide compassionate, evidence-based care under immense pressure. It may not be controlled by the working class, but it is sustained by their efforts and it is all the better for it.
Still, long Covid shows how certain legacies persist. More troublingly, it exposes neoliberal efforts to reframe illness as individual failure of resilience. If chronic disability can be reclassified as psychosomatic, government can deny the social, financial and medical support sufferers need. This fits conveniently with Starmer’s recent repugnant disability benefit cuts.
Though medical science has progressed, the working class remains largely excluded from shaping its priorities. As a result, profit often comes before patient care. The only way to stop this cycle of harm is for the working class to take democratic control of health services and medical research - so everyone, from doctor to patient, can work together to alleviate suffering, not generate profit.
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www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/selfreportedcoronaviruscovid19infectionsandassociatedsymptomsenglandandscotland/november2023tomarch2024.↩︎
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www.who.int/europe/news-room/fact-sheets/item/post-Covid-19-condition.↩︎
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research.uky.edu/news/uk-researchers-find-alzheimers-brain-changes-long-covid-patients.↩︎
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www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services.↩︎
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www.nih.gov/many-people-long-Covid-have-signs-persistent-sars-cov-2-proteins-new-findings-show.↩︎