Insight: The Scots who are living with nightmare of ‘long Covid’
“My wife is writing something down for me in case I forget,” he says at one point. He hallucinates too. “I see bugs that aren’t there,” he says.
At the beginning of the year, Hollingworth was a healthy young civil servant, who walked to the office every day. A few days before lockdown, he started experiencing the classic coronavirus symptoms: a fever, then a cough. It was unpleasant, but he wasn’t desperately ill. He rode it out for a fortnight, then returned to work.
A week later, however, Hollingworth suffered a relapse, and this time the symptoms were worse: increased breathlessness, fatigue, brain fog. Unsure what was happening, he struggled on before finally accepting it was impossible. “People were relying on me,” he says. “It was difficult to say: ‘I have forgotten all this’ or ‘I will need this written down’.”
Now he sleeps 12 hours at night and naps during the day. “I am not recovering,” he says. “In fact, I have never felt worse. I am trying to get into a routine and claw back any good hours of the day, but I have no idea when I will get back to work. I can’t guarantee when I’ll be awake; or how I will feel from one day to the next.”
Hollingworth is one of more than 60,000 people in the UK suffering from a range of post-coronavirus complications which, together, have come to be known as Long Covid.
Everything about Long Covid is terrifying. First there’s its prevalence. Tim Spector, a professor of genetic epidemiology at King’s College London, who is leading the Covid Symptom Study app, has estimated that between 10 and 20 per cent of all those who contract Covid-19 will suffer ongoing complications lasting three months or more.
Then there is the severity and range of the symptoms, which are respiratory, cardiological, dermatological and neurological, and include rashes, toe blisters, blood clotting and palpitations. Some of the worst affected have seizures, ischemia, kidney failure and even strokes. Such life-changing symptoms, with no timetable for recovery, may also bring on anxiety and depression.
Finally, there is the fact scientists understand so little about it. Researchers have suggested the symptoms may be caused by the immune system trying to fight residual pockets of the virus, or damage caused by the virus. Or it may be caused by the immune system continuing to fight the virus when it is no longer there. But even if any of these hypotheses are correct, they don’t have any idea how to prevent it.
With no experience to draw on, GPs don’t know what to do if blood and other tests prove inconclusive. One told Hollingworth to take plenty of Vitamin C and go for a walk. But even those who have been proactive are at loss.
“I have a huge list of different symptoms that have come and gone, but trying to tell a doctor all that in a five-minute phone call is difficult,” he says. “They tend to home in on the thing that sounds most important.
“I was sent to hospital a fortnight ago when my heart was out of rhythm, but I had a CT scan and an ECG – and they ruled out any major damage. So I feel for the doctors – it’s not like they can say: ‘We need to do this or that.” Hollingworth’s GP has put him on antidepressants which he doesn’t think he needs. “What I really need is some support so I can live more normally.”
Lack of information
In the early days of the pandemic, most of the attention was on the sharp end of the crisis: the people on ventilators in ICU; the mounting death toll. This was understandable. The result, however, was that a particular narrative took hold. Covid-19 was life-threatening to those who were old or had underlying health conditions; but not to the young, fit and healthy, who were unlikely to be affected.
Professor Debby Bogaert, a specialist in infectious diseases, is one of a growing number of medical experts who worry this false picture has bred a complacency amongst a younger demographic who believe they are unlikely to be affected.
“I think not having this information out there is unhelpful,” says Bogaert, who is still suffering respiratory problems after her own brush with Covid in March. “Everyone is corona-fatigued and some people are wondering why they should do things for the community that are not in their own benefit.
“But people should understand that even if they have no comorbidities, there is a risk of them being ill for a long time. That, yes, they need to do things for the sake of the community, but they are also acting in their own interests as well.”
“Part of the problem is that much of the current research, including the UK-wide PHOSP-COVID study, is concentrated on those who were admitted to hospital. Yet a significant proportion of those with long-term complications have remained at home throughout.
“How ill you become in the first two weeks of contracting Covid-19 is related to whether you are in a high risk group, or have comorbidities, but the likelihood of suffering long-term problems seems completely detached from this,” Bogaert says. “What we are seeing is that many of those with complications were really active – they were runners or cyclists or yoga instructors.”
Bogaert’s appeal for a shift in the narrative is echoed by Lesley Macniven, campaigner and moderator of LongCovid.org, one of several Facebook groups to have shot up in the absence of professional medical support.
LongCovid.org campaigns for recognition, research and rehab, as well as liaising with experts in various fields.
There is a lot of trial and error involved. For example, through menopause expert, Louise Newson, the group discovered some women on HRT found hormone-related symptoms were alleviated by using extra gel.
“We are learning by sharing experiences,” says Macniven, who, like Hollingworth, fell ill in March, and still suffers from breathlessness and fatigue. It can be reassuring for members to swap notes; for example Macniven and Hollingworth both discovered their hair was falling out in clumps at roughly the same time. “It’s scary but good to know your symptoms are not unique to you,” Hollingworth says.
Macniven wants the UK and Scottish governments to properly acknowledge the scale of the Long Covid problem, and tap into the group’s learning, so it can help shape future policy-making.
“Decisions are being made on a balance of risk assessments based on health versus the economy,” she says, “ but so far this group of people [community-based Long Covid sufferers] have been completely omitted.”
Both in terms of symptoms and the tendency to be overlooked, Long Covid has much in common with other post-viral conditions, such as ME or Chronic Fatigue Syndrome (CFS). Patients in those communities spent decades being dismissed by medical professionals who regarded their illness as psychosomatic, before finally gaining recognition.
Their campaign has paved the way for Long Covid sufferers, who – as an identifiable cohort – are already at an advantage. Unlike those with ME, they all contracted the same virus at roughly the same time, and so their symptoms and trajectories can be easily compared.
Long Covid sufferers also benefit from the fact that many doctors and other medical professionals are themselves suffering from post-Covid complications, who have become powerful advocates for the cause.
Take Amy Small, for example. Small, 39, is a GP in Prestonpans, who has been running a fever ever since she, her husband and her two sons, aged four and six, became ill in April. Among other things, she has developed postural tachycardia syndrome (PoTS), an abnormal increase in heart rate that occurs after sitting up or standing. “If I go up the stairs, my heart rate will shoot up to 140 and my arms and legs will ache,” she says.
Even short periods of exertion exhaust her and she suffers brain fog. Recently, a walk to the school gates alongside other parents, followed by a short bus trip, left her shattered for days.
“Long Covid is largely invisible,” she says. “It is causing invisible disabilities and it is not easy for other people to fathom. But I think: ‘Fine, we didn’t die from Covid, but neither my husband nor I are able to work at the moment.’ There are lots of people out there who are losing their jobs because of this, or who are going back to work despite being unwell because they can’t afford not to.”
Last month, she and Bogaert were among 39 medical professionals to sign an open letter to the BMJ calling for more scientific studies and surveillance, to include those not admitted to hospital.
“The effects of the virus should be studied in the way that any other disease would be, with thorough attention paid to epidemiology, pathophysiology and management,” the letter said. “We still know very little about Covid-19, but we do know that we cannot fight what we do not measure.”
Talking to Scotland on Sunday, Small highlighted the need for more research and resources. “We are hearing of more and more people getting diagnoses of myocarditis, which is inflammation of the heart muscle, and yet the only test that can diagnose it is a cardiac MRI and most people don’t have access to that,” she says. “We also need a lot more neurological research to find out what’s going on with our brains.”
All those I interviewed, including Small, also called for greater and more holistic support for those suffering long-term complications
“The good thing is GPs are starting to pick up on the fact there is such a thing called Long Covid,” says Bogaert.
“But there’s still a limit on what they can do for patients. If you have a very specific symptom like lung problems, they can refer you to a pulmonologist. If you have heart issues, they can refer you to the cardiologist. But the pulmonologist or the cardiologist will look at an ultrasound or an ECG and, if it’s clear, they will say: ‘there’s nothing more I can do for you’.”
What she and the other signatories to the BMJ letter want are multidisciplinary clinics where instead of being treated by one specialist, patients can be treated in the round. “We need a multi-disciplinary clinic, so we can say to every patient: these are the best tests to carry out, this is the best approach to treatment, and this is the best [programme of] rehabilitation.”
In Scotland, the service that comes closest to what Bogaert describes is NHS Tayside’s Covid-19 Assessment Rehabilitation and Support (CARES). Run by occupational therapists it offers advice on managing breathlessness and fatigue, but can also connect patients with dieticians or psychologists, or provide referrals to cardiologists or pulmonologists.
CARES is also linked with NHS Tayside’s Covid clinic, which was set up for patients who had been in ICU or a hospital ward, but is now starting to see some of those who spent the early period of their illness in the community. The service has seen 95 patients so far, but is already over-subscribed, with a waiting list of 35, and a steady flow of new referrals.
“We expected the service to be mostly short-term interventions – giving advice and with one or two contacts, but it has turned out to be something very different,” says Gillian Crighton, integrated manager, physiotherapy and occupational therapy. “Many of the people referred to us have significant problems requiring long-term support,”
Occupational therapist Vicky Fyffe, who helped set the service up, says the patients they are seeing are struggling with breathlessness, cardiac problems, hair loss, anxiety and low mood. “Covid has changed their lives so it has been important to look at their problems holistically,” she says. “For a lot of people it’s about trying to get back to the way they were before. We are not there yet, but we are moving in the right direction.”
Callum O’Dwyer, 28, is one Long Covid sufferer who is moving in the right direction. He was a runner before he became ill with Covid-19 in March, but spent several months completely incapacitated.
Like the others, he spent the initial illness at home and went back to work as a mechanical engineer, but then he suffered a relapse so severe he was, at times, unable to lift the water bottle beside his bed.
“My body was hit by this aftershock,” he says. “The fever, cough and chills were gone, but my body was so weak and feeble. I was tired and worn out all the time.”
Worried he might still be infectious, he stayed alone in his flat, eating ready meals and rationing his showers. Eventually he realised he couldn’t cope alone and moved back in with his parents where he remains today.
“I had shortness of breath and heart issues,” he says. Sometimes I would be lying down for half an hour and I would feel weird so I would check my pulse and it would be up at 130. I also had issues with my stomach massive acid reflux and a constant burning sensation as well as brain fog. I experienced mild visual hallucinations and I couldn’t read because the words kept jumping around the page.”
Staying at his parents allowed him to rest and, in the past few months, he has been making steady progress. His GP gave him some breathing exercises which allowed him to start taking short walks, increasing the distance over the days and weeks.
He is still waiting for a heart scan and other tests and is doing DIY physio to boost his core strength as sitting upright for hours at a time is still difficult. But you can hear the relief in his voice when he talks about being back at work a few hours a day.
The toll this has taken on O’Dwyer and those around him is huge. It has impacted his physical and mental health, his parents and his employer. Imagine this magnified by tens – perhaps hundreds – of thousands of people across the UK. Unchecked, it has the potential to place a huge burden on the NHS and the economy. Every case of Long Covid sends ripples out into the wider community. What happens if a substantial number of doctors or nurses are out of commission for months at a time just as infection rates are rising?
O’Dwyer was able to rest because he could move back to his parents. But how would those caring for young children or elderly parents cope? And what about those with precarious jobs or unsympathetic employers?
“If the best treatment we have for Long Covid is rest then you need to be able to let people do that,” O’Dwyer says. “Maybe [the government] needs to think about improving statutory sick pay or introducing a furlough scheme, specifically for people suffering long-term effects.”
He worries Long Covid will continue to be low on the priority list compared with, say, finding a vaccine, and that sufferers are going to have to fight hard to make sure they are not forgotten.
“Though I am feeling a lot more positive than I have been in the past, this has led me to some very dark places,” he says.
“I understand that if people don’t feel that recovery is forthcoming – or they rush it and push themselves backwards – they may begin to feel like a prisoner in their own body, and that is horrible.
“Without support, your world might become the four walls you are resting in.”
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