Long Covid: ‘Is this now me forever?’

One night in early March, I had a fever that reminded me of being a child. My pyjama top stuck to me with sweat, my joints ached and, at some point, the walls looked like they were breathing. The next morning I started coughing and didn’t stop. It was pre-lockdown and, taking pity on me (I live alone in London), a friend in the countryside offered to be nurse. En route, in Paddington Station, I longed to curl up like a cat beside the warmth of the Upper Crust stall. One morning, my friend told me she’d poked her head round the door throughout the night to check I hadn’t coughed my aorta up into the bed.

Back in London, as lockdown began, unpredictable spells of fatigue started to hit me. Was it Covid? I had no idea; only NHS staff were being tested then. But it didn’t feel like chest infections I’d known. There was a crushing feeling in my chest for weeks, as if my ribs were a pair of bellows being squeezed. Adding to the fun, I’m asthmatic. On two occasions, things felt hairy and I called 111. Each time I was summoned to A&E and given a nebuliser and steroids, which helped dramatically. But March became April, became May and the fatigue remained. Some days, it felt like a possession. I’d walk the dog in the morning then fall asleep on the sofa until 3pm. Eight months on, I still have mild, irregular breathlessness and chest tightness. I have been upgraded to a steroid inhaler that, generously, keeps giving me oral thrush. My GP thinks I may have long Covid.

Long Covid is not medically definitive, but a term that describes a portion of the population struggling with symptoms for weeks or months after being infected with Covid-19, and not just those who were seriously ill. In fact, there is no evidence that links severity of infection and ongoing symptoms like fatigue. Data from the app-based Covid-19 symptom study, being conducted in real time by the genetic epidemiology team at King’s College London (KCL), showed that up to 60,000 people had reported having symptoms for more than three months. Fatigue is the most common, but breathlessness, chest tightness, brain fog, gastrointestinal issues, joint pain, headaches and vertigo are among other reported manifestations, ranging from mild to debilitating. For many, the psychological effects are profound.

What is causing so many people to be knocked sideways like this? Preliminary data from the first study to assess the long-term impact of Covid-19 on multiple organ health in “low-risk” individuals (those who are relatively young and healthy) with ongoing symptoms shows 70% of the first 200 screened patients have impairments in one or more organs, including the heart, lungs, pancreas and liver, four months after they were first ill.

More data is needed, but an emerging theory regarding the ongoing fatigue people are experiencing is that long Covid could be a post-viral syndrome akin to chronic fatigue syndrome (CFS). In fact, Professor Frances Williams, who is part of the genetic epidemiology team at KCL overseeing the app study, and who has been researching CFS for decades, believes Covid-19 may “finally unlock the black box of chronic fatigue, which is, truly, one of the last frontiers in medicine.”

Lee Bowen has made a career from his lungs. As an opera singer, harnessing the power of his breath is a daily practice. For the past eight months, his chest has not felt like a site of power but one of trauma. Throughout March, Bowen, 49, from Caerphilly, says he felt “chesty and fluey” with a cough and progressive, disabling fatigue. “I was walking to the shop one day and wanted to lie on the pavement and go to sleep,” he says. The cough persisted. One evening in late March, Bowen was so unwell he called 111. He was sent to A&E, where x-rays showed his lungs “were in good shape”, but he wasn’t tested for Covid. Bowen cannot be certain he had the virus, but his GP feels his symptoms are Covid-related. Six months after his cough started, he still has “bizarre and unpredictable” fatigue as well as “brain fog” that stops him being able to read. “I see the words, but they don’t go in,” he says. Blood tests ruled out any serious problems, which led to Bowen’s GP diagnosing post-viral fatigue or long Covid. “It is hard,” he says. “Very hard.”

Bowen is one of 30,000 members of the Long Covid Support Group on Facebook. Many members report feeling unseen and desperate. Some are bed-bound, broke because they can’t work and, in some cases, facing homelessness. The National Institute for Health and Care Excellence (Nice) and the Scottish Intercollegiate Guidelines Network (Sign) are now working with the Royal College of GPs (RCGP) to draw up guidelines to help those with long-term complications in both primary and secondary care. Understandably, many feel this official recognition has taken too long and that, with earlier intervention, their outcome might have been very different.

Professor Martin Marshall, chair of the RCGP, tells me that the college had “long been calling for the development of guidance to support healthcare professionals to deliver the most appropriate care and treatments to patients suffering with long Covid,” which he describes as “a dreadful condition”. Like all other aspects of Covid-19, he explains that, although we are starting to understand more, we “need to see more research so that GPs can deliver the most appropriate care and support in the community”. A network of 40 specialist NHS long Covid clinics are now opening, which will come as good news for people who have previously been rejected from oversubscribed services.

Amy Durant, 31, a digital publisher from Surrey, was recently rejected from a long Covid clinic. She was very unwell in March (“fever, aches and delirium”) and, throughout April, started to feel as if “something was crushing my chest.” She was seen by paramedics one evening, who were reassured by her vital signs and didn’t take her to hospital. This was encouraging, but a positive antibodies test and a CT scan (“which took six months to get”) identified damage to the airways in her lungs, and have left her feeling less hopeful. “I have no idea if this is permanent. Before this, I ran 15km a week on the Surrey Hills. Now, I have mornings where I turn the kettle on and have to go back to bed. I need some help.”

For those who have survived being seriously unwell with Covid-19, a protracted recovery is common. Life after such severe illness and the treatments required, such as intubation or mechanical ventilation in intensive care, is slow, basic and often very frustrating. Damage to the lungs and heart, and muscle atrophy, can leave previously healthy, spirited people feeling like a hologram of who they once were.

Nigel Heal, a semi-retired Welsh Ambulance Services NHS Trust manager, spent 12 days in intensive care in April. He describes his life now as being in “biometric opposition” to before he fell ill. “I’m normally up in the mornings at 5am, at my desk early and full of enthusiasm,” he explains. When Heal, 62, first returned home after hospital, he couldn’t move without shortness of breath or an increased heart rate. “Then it became muscle and joint pain. The fatigue has been constant, but so damn variable. I never know how the day will go when I wake up. Everyday tasks need pacing. Eight weeks ago, I was talking to my line manager about a phased return to work, but woke up the next day and felt dreadful.”

Heal is “slowly making progress” with the hospital rehab programme he attends with his partner, Rob, who was admitted to intensive care with Covid a week before he was. The couple were, at one point, “back-to-back in side wards”, but couldn’t communicate because they were bound by machinery and Heal forgot to give Rob his phone. Heal is thankful they’re on the recovery journey together – “my good day might be his bad day and we can look after each other” – but has thought at times: “Is this going to be us forever now?”

There is a gentle dejection in his voice. “I’m a happy person, but I can’t lie – this has been incredibly difficult.” An important part of Heal’s emotional recovery has been filling the gaps in his recollection of the hospital stay. “I had false memories,” he says. “I thought I was only on a ventilator for a few nights, but later found one of my selfies of me on a ventilator during the days. I submitted a subject access request for my medical notes and was able to join the dots. I saw that I really was in dire straits.”

Even people who were mildly ill with Covid-19 have been left with ongoing health issues. This can create a deep psychological wound. “A lot of people feel isolated and unsupported,” says Professor Williams. “This is why we are trying to provide useful, well-validated information on our website and feed the data into government.” From the beginning, the Welsh and Scottish governments were keen to engage. “It has been more difficult with ours,” she notes, pointedly. “We have used what we have learned to pressure the government into changing the list of ‘official’ symptoms. For example, they were reluctant to include loss of taste and sense of smell, despite it being a very obvious symptom cluster in our data.”

Williams explains that as-yet- unpublished data from the app (with 4.3m users at the time of writing) suggests “about 9-12% of people are still symptomatic at four weeks after illness onset,” with more women being affected than men. This provides an incredibly valuable, but not exhaustive, insight into how the virus is behaving among the UK’s population of 66m. But many people won’t have used the app, will not have been tested at the time of infection and are unable to access antibody testing – currently only available on the NHS for certain people who work in primary care, social care or education. (At an average cost of between £70 and £100, private services are too expensive for many.) So it’s impossible to know how many people could have long Covid. The underlying mechanisms are also shrouded in mystery, but theories are emerging.

The uniqueness of the way Covid-19 attacks the host seems to be making people more unwell than with other viruses, as well as causing lingering and evolving symptoms. One theory is that the virus has been eradicated from most of the body, but is lingering in small clusters. For example, if someone has long-term diarrhoea, the virus may still be “hiding” in the gut. The virus may also affect organ function and cause scarring; most obviously in the lungs if a person developed pneumonia. (Long-term impaired lung function has been seen after Sars and Mers infections, both types of coronavirus.) Novel effects have been observed in the blood of some people who have been hospitalised, too, including abnormal clotting and damage to blood vessels. The most widely agreed-on theory is that long Covid could be the result of the body maintaining an immune response longer than it needs to.

“The symptoms of long Covid are similar to other post-viral syndromes,” says Marshall. For example, some people who have had glandular fever will have fatigue that lasts for months. Williams agrees: “A likely scenario is that someone with long Covid has an immune system that has gone into overdrive.”

When the body is fighting a pathogen, chemicals called cytokines are released by white blood cells. This creates an inflammatory response, including swelling and increased blood flow to the area that marks the infection’s location and attracts more white blood cells. This causes those awful flu feelings: fever, aching limbs and exhaustion. The immune response is turned off once the infection has been fought but, for some people, the switch stays on, causing ongoing fatigue and other symptoms. Williams’s theory is that genetics inform the kind of exaggerated immune response people with long Covid may be having. Chronic fatigue syndrome is rooted in the same theory.

In 2018, the largest study to date on the causes of CFS suggested that the condition may begin as a result of an exaggerated immune response. CFS is often diagnosed when fatigue and other prolonged symptoms cannot be medically explained, but a “trigger” illness or event is commonly identified. The complex nature of CFS means that improved medical testing is only part of the picture for providing better help for those living with it. Exploring the emotional component is integral, because CFS is often informed by a person’s underlying mental health and past experiences. Fatigue is compounded by catastrophic thinking. Patience, empathy and validation, then, are key to any successful care pathway, particularly in light of the well-established link between CFS and those who have experienced childhood trauma. The precise underpinnings of this link are not fullyunderstood, but it’s clear.

Dr Jonathon Tomlinson is a GP in east London, caring for one of the most socio-economically deprived communities in London. His key interest is “medically unexplained” symptoms. Tomlinson believes that a vulnerability to developing long Covid may be rooted in trauma. “The evidence so far is unsurprising. If someone has a history of mental distress and develops long-term symptoms after infection, they may have less resilience. The symptoms may be much more anxiety-provoking, which in turn makes the symptoms worse.”

For both doctor and patient, it may be impossible to distinguish between the symptoms of a fight-or-flight system at full tilt (breathlessness, dizziness, nausea, diarrhoea and increased heart-rate are classic) and those of a post-viral syndrome. But these conversations should be collaborative.

“Individualised, empathetic care is going to be key,” says Tomlinson. “We have to think about the heterogeneity of long Covid.” What does this mean? “Well, like most GPs I have a handful of patients with ongoing problems, but they are all so different. One man barely speaks English and has been very frightened by his symptoms. His experience is different to a middle-class white British woman who is able to find community in a Facebook group. Her experience is different to a single mother of three kids from a BAME community, who may be completely exhausted, but doesn’t have the time to engage with any referrals I could provide. None is ‘better’ than the other, but applying broad strokes to people’s experiences is unfair.”

Validation – a key aspect of helping those with CFS – may not be found for everyone in ongoing testing. “My experience is that people who have been very ill in hospital will have stuff found, like lung scarring, blood clots or pericardial effusions [fluid around the heart]. People who weren’t that sick rarely have things found,” says Tomlinson. Two of his GP colleagues with ongoing post-viral symptoms were both referred to a post-Covid clinic. One was found to have pericardial effusion; the other nothing. Both doctors felt many of the tests were invasive and unnecessary.

“As GPs we are fairly parsimonious with tests. When you know the system, you know when someone is just doing every test they possibly can.” Why? To cover their backs? “Yes, but also to justify the funding.”

Understandably, some people may be reassured that a doctor is doing everything they can to get to the bottom of their symptoms. But there is also a risk that continued investigation could lead to more incidental findings that, however benign, may increase emotional distress in those with complex backgrounds.

“In some cases, you’re made sick by medicine,” says Tomlinson, who also identifies the risk of “long Covid-ising” people’s symptoms and missing the normal stuff (“GPs get three calls a day about dizziness; how can you possibly say it’s long Covid or Ménière’s disease?”) But there is also a risk in putting everything down to anxiety and delaying important diagnostic tests. “Really getting to know someone and their history is fundamental.”

“We really do need specialists to look at people,” says Durant, who feels “too much conversation among non-medical professionals” is dangerous. I agree. Finding online communities can be validating, informative and reduce feelings of isolation. But they can also become places of conflict that may influence already vulnerable people to undergo superfluous testing that reinforces a “disease” mindset and reduces feelings of autonomy. As with CFS, the problem lies in the lack of widespread individualised, holistic care.

That long Covid is more common in women – as is CFS – speaks to a stark truth: the persistent dismissal so many women with chronic symptoms feel from medical professionals – It’s your anxiety, madam! It’s the menopause! – makes them feel worse. If we are in pain and not listened to by someone we thought might be able to help, we turn that pain further inwards, where it stretches a claw into other parts of our being. On this point, Williams believes the lessons from Covid-19 could help inject more empathy into medical training: “If we don’t sort it out in the next couple of years, we’ll have failed.”

If long Covid can be understood through the framework of CFS, medical investigation is important, but a psychologically informed approach that does not treat the symptoms as the entire story is crucial in helping people understand and manage how they feel. As Williams says: “What most people need more than anything is somebody with the time to really listen to them.”

Writing this piece and hearing the stories of others has made me realise how at sea I have felt in my own body this year. I steadily lost trust in my corporeal strength, but am now rebuilding it – something that only began to feel possible when I confronted the shame of the loneliness I have felt. I’ve never found it easy to say, “I’m struggling,” but clearly the pain hasn’t just been in my lungs. Emotion lives in the body. My thought patterns have affected my breathing and vice versa.

I have been referred to a long Covid clinic for some further tests, but wonder if this whole experience hasn’t also been a stark lesson in what removing regular human connection, and the opportunity to be heard, can do to a soul.