‘I’m going to get there’: they’re slowly recovering from long Covid – but how?

Florence Mutesva fell ill on the ward. A nurse for 18 years, she had been caring for patients with respiratory problems at University College London hospitals (UCLH) when her symptoms came on. Beyond feeling ropey, she was scared. It was March 2020 and people were dying as the first wave of Covid – a mysterious new disease – swept across Britain.

Mutesva signed off sick on 23 March, a date branded on the brains of many in Britain as the day the prime minister announced the nation’s first lockdown. Mutesva had little choice in the matter: the infection took hold and incapacitated her. She was coughing and struggling to breathe. She had palpitations and pains in her chest. She couldn’t get to the shower without stopping for breath.

Concerned about her condition, doctors called her back to the hospital. Mutesva tested positive for Covid and was monitored for hours, but was later sent home. “I was really worried because I live on my own,” she says. “As a nurse, when a patient has chest pains and is struggling to breathe, you get worried, it’s an emergency.”

Her family was keen to check on her, so Mutesva had them phone her at 9am each day. If she didn’t answer, they had instructions to alert the concierge. She left her front door unlocked in case they had to come for her. “I didn’t know, when I went to bed, if I was ever going to wake up,” she says.

That first bout of Covid was brutal, but it was not the end of the story. Although most people who catch the virus have a mild disease which clears up in a few weeks, Mutesva, 43, was one of those who experience long-lasting illness. The Office for National Statistics estimates that 1.8 million people in the UK are living with long Covid, with symptoms lasting more than four weeks. Nearly half, or 43%, caught the virus more than a year earlier. Typically, a fifth say their symptoms substantially limit their day-to-day activities.

NHS medical staff wearing PPE work in a corridor in a ward for Covid patients. Photograph: PA Images/Alamy

Mutesva was off for 10 weeks before she returned to work. Her sense of smell, which had abruptly vanished, had returned and she seemed to be improving: she was tired, but the chest pains were easing and she could walk to the tube station without stopping.

Rather than returning full-time straight away, Mutesva started on reduced hours. After five weeks she tried her first 12-hour shift. It did not go well. The breathlessness, palpitations and chest pains returned, and she ended up in A&E. Doctors urged her to take another week off.

It was August before Mutesva got a sense of what was wrong. Doctors at University College hospital in London had set up a long Covid clinic where tests showed her blood oxygen fell when she performed a simple exercise of repeatedly standing and sitting. Furthermore, a specific blood test suggested she might have “microclots”. It is little more than an idea at the moment, but there is some evidence that tiny blood clots may underpin some symptoms in some patients, for example by impairing the diffusion of oxygen into blood in the lungs.

Mutesva was put on a three-month course of rivaroxaban, an anticoagulant that is used to prevent and treat blood clots. “After three months I was feeling much better, all the symptoms were resolving,” Mutesva says. But when she stopped the drug, they soon came back. She restarted the treatment, which helped again, only for the symptoms to return once more when she stopped. As of July, Mutesva had taken four courses of the drug. Six weeks after the last course, her symptoms had not come back. It may be the breakthrough she has been waiting for. “I’m not 100%, but I’m 90% better,” she says.

After two years, the illness has had knock-on effects throughout Mutesva’s life. She was redeployed to a desk job and doesn’t know if she’ll ever manage her previous 12-hour nursing night shifts. The financial hit leaves her hundreds of pounds worse off each month. Her social life has suffered, andshe cannot travel back to Africa to see family as often as she used to.

Other changes are more positive. Mutesva was severely overweight before the pandemic. In the past two years, she has lost nine stone (126lb). She started walking at the weekends and also walks around the block for half an hour at lunchtime. “I’m more active intentionally,” she says. “It has helped my recovery.”

‘There’s something more going on’

Doctors at UCLH launched the long Covid clinic when they became worried at the number of Covid patients being readmitted to hospital. To find out what was going on, they called nearly all the Covid patients who had been discharged in the previous month. Nearly half sounded unwell enough for the doctors to call them back in.

Doctors assessed patients in UCLH’s “Find and Treat” van, a mobile health clinic that travels around London providing diagnoses and care for homeless and other vulnerable people. Word soon got around. GPs called up to ask if they could send patients over. NHS staff – who were badly hit by Covid – were a good proportion of those.

The initial worry was that patients would have complications from Covid, such as inflammation in the lungs, says Dr Melissa Heightman, a specialist in respiratory medicine at UCLH. Some did, but the doctors saw a much broader range of problems. Patients had severe fatigue, breathlessness that couldn’t be explained, palpitations, chest pain, headaches, a loss of smell, dizziness. “That was very worrying given the large numbers of people who were getting infected,” Heightman says.

Because people’s symptoms varied so much, the clinic pulled together specialists from different fields to work up treatment plans. “We felt very alone at the beginning because there weren’t many of these clinics,” says Heightman. “People were saying, isn’t this just a post-viral thing? I said no, it’s worse. This isn’t just feeling tired for a couple of weeks. There’s something more going on.”

‘I still have so far to go’

Megan Willis, a dance teacher who suffers from long Covid.
Megan Willis, a dance teacher who suffers from long Covid. Photograph: Teri Pengilley/The Guardian

Megan Willis, a 34-year-old dance teacher at a secondary school in Beckenham, also caught Covid in the first wave. She had a bark of a cough and lost her sense of smell, but like many in education, tried to power through. The cough eventually cleared up and, apart from the loss of smell, Willis felt fine in the summer. But that autumn, just before half-term, it hit her. “I couldn’t breathe,” she says. “I couldn’t get out of bed.”

Willis went to hospital and was put on oxygen, but the doctors soon sent her home. Routine tests flagged up nothing untoward. “My oxygen levels were average, everything came back average. But I knew something wasn’t right,” she says. “As a dancer, you really understand your body. I was insanely fit, but they kept saying average is really good. I was really frustrated.”

Willis took a fortnight off and then worked through the winter. She felt OK for a while, though she had started gasping for breath. She pushed through 2021, but early this year her condition deteriorated. She couldn’t walk for more than five minutes. She couldn’t carry anything. She got shooting pains in her arms and legs.

In March, Willis got an appointment at the UCLH long Covid clinic. There, doctors found she had developed a breathing disorder. Her nose felt completely blocked even though scans revealed that it was fine. She was signed off work and was hit by overwhelming fatigue. She slept for nine to 10 hours a day. As a single mother, she turned to family and friends to ferry her daughter to and from school. “It was awful,” she says. “I couldn’t do a food shop, I couldn’t drive for long, I couldn’t do anything.”

The clinic arranged for Willis to have breathing physiotherapy, a 12-week course on Zoom with others whose breathing had been knocked sideways by Covid. The aim was to retrain the brain to breathe normally again, but the course had other benefits. The clinic brought a community together. “Everyone said the social side, and the mental side, were so difficult,” she says. “You look fine, but it’s an invisible disease.”

Willis was put on antihistamines – drugs used to dampen down allergic reactions – and started taking antidepressants to help with the mental toll of her life becoming so drastically limited. She joined a patient group on Facebook, is trying acupuncture and reflexology, and transformed her diet, dropping wheat, dairy, caffeine, alcohol and high-sugar foods. After a brief return to work in July, school broke up for the summer.

Willis believes she is on the mend, but the prospect of going back to full-on dance teaching in the autumn is daunting. “I’m much better than I was in March, but I still have so far to go,” she says. Her sense of smell has not come back, but it’s the physical fitness Willis misses most. “I want to get back to where I was. I can’t let go of the super-fit person I was for 25 years. Mentally, it’s like, who am I?”

Megan Willis: ‘I can’t let go of the super-fit person I was for 25 years.’
Megan Willis: ‘I can’t let go of the super-fit person I was for 25 years.’ Photograph: Teri Pengilley/The Guardian

Surveys by the Office for National Statistics find that long Covid is more commonly reported by females, the middle-aged and people living in more deprived areas. It is more prevalent among health and social care workers and those in education. People with pre-existing conditions are also at greater risk. But long Covid clinics aren’t seeing all these people. While 70% are female at the UCLH clinic, and many are in the higher-risk age band, very few have co-morbidities. The doctors do not have many patients from deprived backgrounds.

Heightman suspects that GPs find it harder to identify long Covid in patients with multiple health problems, because other conditions muddy the waters. If a doctor knows a patient was fit and well before Covid, but a month later is struggling with fatigue, it is easier to refer them straight to the clinic. Patients from more deprived areas might struggle even to see a GP, then explain what is wrong – especially if there’s a language barrier – and get the right care.

“We are definitely seeing a selected cohort,” Heightman says. “The people we see are very unwell, but they are people who have managed to explain their symptoms and get a referral.” Work is now under way to reach into communities to find those in need of help.

‘I seemed to be in this zombie state’

Yvonne Shield, 58, also caught Covid as the UK entered its first lockdown. The health charity worker had a busy social life and went to the gym three or four times a week for spin classes, body combat and personal training. But Covid hit her hard. Her chest and lungs hurt and she struggled to breathe. She had a continuous headache, severe fatigue, and her hair began to fall out.

After a phone consultation with her GP, Shield was prescribed antibiotics for pneumonia, but her symptoms didn’t improve. “I seemed to be in this zombie state of being very unwell for a long time, but not so unwell that I needed to be hospitalised,” she says.

Yvonne Shield suffers from Long Covid.
Yvonne Shield: ‘I seemed to be in this zombie state of being very unwell for a long time.’ Photograph: Teri Pengilley/The Guardian

Shield was furloughed for 18 months. Beyond feeling overwhelmingly tired, she had brain fog and couldn’t think as clearly as before. She did very little around the house and made only simple meals. She spent a lot of time sitting down, and could feel her fitness ebbing away and her joints seizing up. “People told me I had to go out for walks and build myself back, but it had almost the reverse effect. I’d sleep for two hours to get over a 20-minute walk. I had to learn how to pace myself.”

Shield took the breathing physio course through the long Covid clinic, which helped her to breathe more deeply again. But doctors found she had developed asthma. They prescribed an inhaler which Shield says “transformed” her life. “My symptoms improved,” she says. “They weren’t eradicated, but they improved incredibly, and it helped the fatigue as well.”

The asthma may be with her for life, but Shield feels she is gradually getting better. “My journey is one of improvement, but it is a lot slower and a lot more frustrating that I imagined it would be,” she says. “I’m probably at 70% because I can’t do what I used to do. It’s slow, but I’m going to get there.”

There is no clinical test for long Covid. Instead, patients undergo an assessment that aims to rule out other causes and then identify the components of their illness. Some symptoms can be treated with medicines: the headaches, palpitations and dizziness. Others, such as breathlessness, can be improved with breathing physiotherapy. Many patients need psychological support for the substantial mental challenge long Covid can present.

One of the most common aspects of long Covid, however, is proving harder to treat: fatigue. Patients seem to fall into two groups: some have suffered a severe loss of fitness and benefit from support to gradually recover their physical fitness. But there are others who, whenever they try to be active, find all their symptoms worsen.

“One of the most important research questions for us is why do some people get this horrible post-exertional symptom exacerbation and others don’t?” says Heightman. It means there is no single recipe for treating patients. The approach must be tailored to each individual.

‘I started losing motivation’

Krunal Patel, 24, was in his penultimate year at medical school in October 2020 when he went out with friends for drinks and dinner. At the bar, the drinks seemed weak but he thought little of it. When they moved on to a Chinese restaurant, he became more concerned. The food tasted incredibly bland. Worried that he might have Covid and spread the virus, he called it a night and went back to his flat. There, he tried some Haribo sweets and found them tasteless. He found a bulb of garlic but couldn’t smell it. “I didn’t feel unwell,” he says, “but I thought this must be Covid.”

From chatting to friends who had caught the virus before, Patel suspected his senses would be disrupted for three weeks or so. But two months later, nothing had changed. Social media was full of random “treatments” that he’d previously dismissed for lack of evidence, but he started trying them out, figuring he had nothing to lose. They made no difference.

The NHS recommends smell training for some patients, so Patel ordered a kit and began the programme that December. The training involves smelling a fixed set of four scents every day and focusing on the sensory experience. He learned that he could still experience certain tastes: sweet, sour, salty and so on, but his sense of smell was shot. He kept a daily log to track his progress, but after a month found he had nothing to write. “There wasn’t anything happening and I started losing motivation,” he says. “I thought, is it not going to come back?”

Dr Clair Vandersteen wafts a tube of odors under the nose of a blindfolded patient in a hospital in Nice, France, to better understand COVID-19-related anosmia.
Dr Clair Vandersteen wafts a tube of odors under the nose of a blindfolded patient in a hospital in Nice, France, to better understand Covid-related anosmia. Photograph: John Leicester/AP

The loss of smell was more than an annoyance. Patel’s mood slumped and his motivation to eat waned. “I ended up changing my diet around quite a lot. I’d only eat food if it had a complex flavour profile. I’d double up on the spices. All soup tasted the same. Anything with a single texture was boring. Even milk chocolate was boring,” he says.

When exam time came, Patel found he was force-feeding himself one meal a day to keep his energy levels up.

The loss of smell came with risks, too. When Patel accidentally left the gas on at his parents’ house, he had no idea until his mum rushed over to turn it off.

Other details surprised him. Surgery had never particularly appealed to him, in part because electrocautery – a process that uses a hot wire to destroy abnormal tissue and seal blood vessels – produces such an awful smell. “It’s really unpleasant, but I couldn’t smell it any more,” he says. “And now weirdly, I’ve become more interested in pursuing surgery.”

Patel soon heard about an anosmia clinic at University College hospital for people who had lost their sense of smell and taste. Doctors found that Patel’s sense of smell was about 10% of what it should be. They suggested a course of steroids. The drug had a swift impact, though it wasn’t what Patel expected. Flavours and scents became more apparent, but seemed to be mixed up. Before taking the steroid, he enjoyed the flavour of watermelon and clementines, but those flavours faded. At the same time, coffee started to smell horrible. “It’s still the most unpleasant scent I can smell. It’s like I’m hypersensitive to it,” he says.

Patel was discharged from the anosmia clinic last summer and says his sense of smell remained much the same for months. But in April this year, he started picking up more scents when people were cooking, and detecting more flavours in dishes he’d given up on. “That’s where I am now. I’ve gone from thinking it’ll come back, to feeling it’s stagnated, to feeling maybe there’s more to this process of recovery yet.”

‘As long as Covid is around, long Covid will be around’

Heightman says a major priority now is to “stabilise” the services that have been pulled together. Soon, research will start feeding into treatments. UCLH and UCL are leading the Stimulate-ICP trial, one of the most important clinical studies of long Covid to date, involving patients, doctors, researchers and industry. It will test medicines, diagnostics and digital tools for rehabilitation to see which can make a difference. There may be some important benefits with repurposed medicines, but that is for the trial to find out.

“I think as long as Covid is around, long Covid will be around,” says Heightman. “We have to be prepared for this to be an ongoing need.”

For patients, long Covid can be horribly frustrating as well as debilitating. Social media and news reports often promote what sound like breakthrough therapies, but there is no simple cure for long Covid, not least because it is probably more than one condition. The key for doctors is to build patients’ confidence that they can improve if they actively engage in recovery plans.

“I see people making really important recoveries,” Heightman says. “Some people get better steadily with time and other people have a more rocky road, but there are hardly any patients we’ve been looking after for a year or more who aren’t hugely better than when we first met them. We expect you to get better with time, and the right support.”.

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