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The rise of the “long haulers”: how long does Covid-19 last in patients?

Sufferers are haunted by a “ghost of the virus” months after first falling ill.

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After the rainy bank holiday weekend, Members of Parliament began returning to their Westminster offices on 1 September. It had been perhaps the strangest summer recess in memory: weeks of half-price restaurant meals paid for by the Treasury, a quarantine lottery for holidaymakers, the chaos of exam results and the spectre of local lockdowns.

But for Andrew Gwynne, Labour MP for Denton and Reddish in Greater Manchester, the return to parliament served as a reminder that his own disturbing experience of Covid-19 was far from over. On 2 September, he walked into Westminster from his London flat south of the Thames for the first time since 11 March. The walk, which usually takes 20 minutes, took three-quarters of an hour.

When he arrived, he was breathless and drenched in sweat. “It’s like I’ve done the London Marathon, rather than the short walk from Pimlico,” he tells me over the phone that day, as he opened the blinds of an office he described as the Mary Celeste.

Gwynne has been suffering fatigue, aches and pains, headaches and “brain fog” on and off since he contracted Covid-19, he believes, on 5 March. Although he was never tested – his Manchester constituency postcode was not then considered at risk – Westminster was riddled with the virus at the time, and his symptoms, including a high temperature, led NHS 111 to advise him to self-isolate for two weeks in early March.

For six months, he has suffered from what is becoming known as “long Covid”, “long-haul Covid” or “post-Covid syndrome”.

“You have good days and bad days,” Gwynne says. When we spoke, he was finally having “more good days than bad”, and felt he could do “more than a few weeks ago” – yet he feared falling down the “Covid snakes and ladders” into illness once more.

“It’s so frustrating being a politician and having to rely on words and communication with the brain fog,” he says. “You can see the words, but you can’t quite reach them. You end up garbled, you end up feeling you can’t communicate. It’s awful.”

A growing list of symptoms – from lasting breathing problems to hair loss and purple toes – has been recorded by the all-party parliamentary group on coronavirus (of which Gwynne is a member), which held an evidence session on 5 August and received 662 submissions from those with ongoing Covid-related health problems.

Layla Moran, the leader of the cross-party group, describes long-haul sufferers as the “forgotten victims” of the pandemic. Moran wrote to Boris Johnson on 25 August asking him to formally recognise and step up research into the condition, and to produce guidelines on it for employers and GPs. At the time of writing, she has received no response.

“People deserve to understand: how widespread is this? What can people do about this? How protected are they and their jobs should they happen to get it?” Moran tells me. “What we keep hearing is people saying ‘this is lasting longer than I ever expected’.

“The main thing we need is guidance for employers for what to do when you have someone who has long Covid, because Universal Credit is not set up for this.”

It is hard to say how many people are suffering from longer lasting symptoms. Analysis of data from the Covid Symptom Study app – developed by researchers at King’s College London and used by more than four million people in the UK, US and Sweden to track their symptoms – suggests 12 per cent of app users report symptoms for longer than 30 days, and one in 200 app users reports symptoms for longer than 90 days.

Tim Spector, the King’s College professor leading the app project, estimates nearly 600,000 people in the UK could be affected from around four million total infections (around 350,000 people have tested positive for Covid-19 in the UK).

Experiences vary, as do potential explanations of the phenomenon: an immune system response, or the lingering presence of the virus itself. “People say you can have a ghost of a virus – that’s exactly what it felt like, this faint feeling of how I felt in March,” says Hannah*, 26, who was diagnosed with a viral upper respiratory tract infection in March, when Covid-19 tests were restricted.

Since then, she has experienced two recurrences of illness, each lasting a week, in May and July. Her symptoms included a fluctuating temperature, a sore and tight chest, and sudden lethargy.

“The message is very much: either you’re unlucky and you go into hospital and you get very, very ill, or you ride it out, like flu, and then you’re fine,” she says. “I think that is a confusing message, because I definitely thought I’d got it out of the way – but having the chest symptom again was a little bit worrying because I don’t know what that means.”

Nicholas Hart, the doctor who treated Boris Johnson in St Thomas’s Hospital, tweeted on 29 March that Covid-19 could be “this generation’s polio. Patients have mild, moderate and severe illness. Large numbers of patients will have physical, cognitive and psychological disability post critical illness that will require long-term management. We must plan ahead,” he warned.

Rachel Pope, 44, is a lecturer in prehistoric archaeology at the University of Liverpool profiled by the Covid Symptom Study in June. Five months after she first fell ill, her symptoms remain severe: bouts of fatigue that are "more like passing out, unconsciousness" and chest pain so intense she wonders if she is having a heart attack.

Although she was never tested or hospitalised for Covid-19, Pope ended up in A&E with a raised heart rate and palpitations seven weeks after she first showed symptoms, returning again two weeks later when she felt chest pain that travelled to her left arm. She began taking medication to bring down inflammation in her heart.

“I felt zombie-esque,” she tells me of that period. Early evidence has been emerging internationally about potential long-term damage caused by coronavirus to the heart, lungs and other organs.

Pope and tens of thousands of people like her in online support groups are calling for further research in the UK, as well as rehabilitation services and official recognition of the condition. Although Pope is able to work from her home in North Wales, she fears other patients may not be given enough time to convalesce.

“There’ll be an extraordinary number of people out there forced to go back to shift work, to 9 to 5s in offices, who aren’t up to it,” she warns. “Employers really need to be looking at a phased return to work and reasonable adjustments.”

Two government agencies, the National Institute for Health Research and UK Research and Innovation, announced £8.4m of funding in June for a 10,000-patient study into the long-term physical and mental health impacts of coronavirus on patients who were hospitalised by the disease.

There is less research, however, into the long-term impact on those who contracted the virus in the community, whose cases were considered too mild to be hospitalised, or who fell ill but missed out on the opportunity to be tested at all. A poll in June by the Longfonds lung foundation in the Netherlands found that of 1,622 people surveyed (91 per cent who had never been hospitalised and 43 per cent who had never been diagnosed) more than nine in ten were having problems with simple daily activities almost three months after their first symptoms showed.

“Given there’s a massive community burden in this country of people who never actually went to hospital, I think it’s probably going to be affecting a lot more people than we think,” says David Arnold, a respiratory doctor and researcher at North Bristol NHS Trust, and lead researcher in one of the few first studies of Covid-19 patients’ ongoing symptoms in the UK.

The study's preliminary findings, published on 14 August, found three-quarters of a group of patients (81 in 110) who received care in hospital for Covid-19 were still suffering ongoing symptoms three months later.

These patients were tracked serially after leaving hospital, asked about their symptoms and quality of life with questionnaires, and given chest X-rays, breathing and exercise tests.

“The main overriding symptoms at our follow-up for those patients were shortness of breath in around 40 per cent, extreme fatigue in around 40 per cent, but also things like headaches, muscle aches, a lot of insomnia, and then things slightly harder to describe: a lot of people described a brain fog, or just a difficulty concentrating, tummy pains and things like that.”

Having identified a problem, Arnold says, there now needs to be more research around care and treatment for patients with persistent symptoms – along with further studies of non-hospitalised Covid-19 patients.

Rehabilitation and exercise programmes could be trialled in future, he suggests, and he has offered each of the patients in his study a psychological referral. “There probably is a large psychological impact to having coronavirus and when you’re recovering from a condition and you hear about that condition very frequently on the news or on social media,” he says.

Some sufferers have reported depression and other mental health problems after contracting Covid-19, and the psychological impact of lockdown and life generally in the midst of a pandemic has been widely reported.

“One of the things I keep having is that I can’t stop crying,” says Gerry Brakus, 48, my colleague and the New Statesman’s creative editor, who has been suffering from bouts of long Covid since she took time off work to self-isolate with suspected Covid-19 in March.

“This total weariness and tearfulness, and it’s triggered by absolutely nothing. It feels physical, like my heart hurts when I’m crying. It’s quite intense,” she says. “I wonder, am I depressed because of what we’re going through, with everything that’s happening? But I’m generally quite an upbeat person, so my feeling is that it’s probably this long-haul Covid thing.”

A few weeks after she felt she had recovered from the flu-like symptoms of Covid-19, Brakus developed tinnitus for about a week, and has since been prescribed an inhaler for her intermittent shortness of breath.

“I feel completely fine, and then I crash again and feel really breathless, and wake up with the most incredibly tight chest. I feel like I can’t breathe, and this achiness in my bones is just insane,” she says. “The lingering tiredness [after two weeks] was terrible, and also I felt really low, incredibly depressed.”

After both the SARS and MERS pandemics, studies found ongoing problems for survivors similar to those Covid-19 “long haulers” are currently reporting, writes Peter Wark, a public health professor at the University of Newcastle, in The Conversation. Wark says clinical trials are now recruiting in the UK, Europe and US to discover more about Covid-19’s enduring symptoms.

“There’s obviously a slowness in picking this up as a research effort, and I think that’s probably something to do with the fact that it’s very difficult to run clinics at this time,” says Arnold.

“Calling people back into hospital when you’re trying to do social distancing, trying to pick up the massive backlog of clinics that were cancelled during the pandemic is very difficult – that’s probably why we’re one of the few papers out there at the moment. So then trying to set up treatment trials and things like that is even more difficult.”

The NHS has launched its first phase of an online rehabilitation service called “Your Covid Recovery”, which is currently an online bank of resources for people suffering in the aftermath of the virus.

The second phase – trialled in Leicester – aims to provide personalised support packages, featuring a face-to-face assessment and nurses and physiotherapists assessing patients’ specific needs. Yet this part of the service, described as “due to launch later this summer” after its announcement on 5 July, has yet to appear. NHS England declined to provide further detail on the record in addition to information already available on its website.

Back in the House of Commons, Andrew Gwynne and other MPs are pushing for the government to get to grips with Covid-19’s long-term impact before a second wave hits – during a week in which there appears to have been a jump in UK cases.

“There will be more and more people, as the economy switches back on, who just will not physically be able to go back to work,” warns Gwynne. “I’ve got a relatively light-ish job, deskbound or bobbing in the chamber and speaking. If I were a manual labourer or worked on the bins or as a fireman or in the NHS, there are days when I would not physically be able to work.”

*Name has been changed on request of anonymity.

Anoosh Chakelian is the New Statesman’s Britain editor.