When the first cases of Covid-19 were reported from Wuhan, China in late 2019, few of us were ready for what would happen next. Even when it reached the UK, eventually resulting in lockdowns, the long-term impact was inconceivable. Emptying office desks and turning dining rooms and spare bedrooms into makeshift workplaces felt like little more than a minor inconvenience, or even a bonus for some who no longer had to face a long commute.
That we would still be ‘living with Covid’ three years later wasn’t something most of us even imagined. And although pubs, theatres and – yes, offices – are open again, the world still hasn’t quite settled down. Many families have been devastated by losses, particularly in the first wave before the development of vaccinations, and for an estimated 1.9 million people in the UK (March 2023), or 65 million around the world, the virus and its physical impacts are still present, in the form of long Covid.
Symptoms and support
Covid is a multisystem and, importantly, a vascular illness. It reaches all parts of the body and as a result there are over 200 documented symptoms, of which the most common are fatigue, post-exertional malaise, difficulty concentrating and shortness of breath and pain.
Long Covid Support is a charity that works with patients and their direct carers, offering a peer support group that is one of the largest of its type in the world. Natalie Rogers, from the charity, explains: “Long Covid can be difficult to diagnose, and some people might not realise their symptoms could be linked to prior Covid-19 infection. The picture nationally is that GPs and other health care practitioners are overstretched and have inconsistent understanding of long Covid. A recent joint survey by Long Covid Support and the TUC found that one in seven UK workers with long Covid have lost their jobs and two thirds have experienced unfair treatment at work.”
Dr Mark Faghy, Associate Professor of Respiratory Physiology at the University of Derby, has been carrying out research into long Covid since 2020. This followed his previous research work with the Royal Derby and Burton NHS Trust and the University of Nottingham Hospital Trust into acute respiratory infection.
He explains: “We were working with pneumonia patients after they had been discharged from the hospital, trying to understand the kind of long-lasting symptoms they were experiencing. With over 100,000 annual hospital admissions, there’s a common post-viral complication which means that around 50% of them go back to their GP for a second course of antibiotics or get readmitted to the hospital, and more than 60% report symptoms that affect their daily activities for up to a year.”
Repurposing research
Dr Faghy’s research project had just finished when the first Covid cases were reported in the UK and the country went into lockdown. Months of frustration ensued, during which he kept in touch with consultants at the hospital – and from April 2020 they started to identify patients who, two or three months after the initial infection, were reporting that their symptoms hadn’t gone away or that they had complications.
“We moved quickly to repurpose our previous work with pneumonia patients to see if we could understand the symptoms, their severity and how they changed over time," comments Dr Faghy.
Although other studies were taking place, the one led by Dr Faghy and his team was unique in having regular contact with the patients – bi-weekly telephone consultations or appointments: “We were seeing a really undulating or episodic symptom profile so patients would report on one visit that they were feeling better, and then on another one that they’d gone backwards completely.”
Powerful impact
Among the ways that Dr Faghy gained insight into the patients’ symptoms was the introduction of patient diaries: “These proved powerful in terms of recording how it was impacting patients, physically, mentally and emotionally – even socially. People were reporting breakdowns in relationships and friendships they’d had for their whole life.” You can read more about the study on the BMJ's website.
One of the patients who has taken part in the research was actor Emma Samms MBE, who we talked to in issue 15 of the magazine. She said:
“When Mark and his team at the University of Derby reached out to me, it was immediately apparent that their unique approach to investigating the complex and diverse symptoms of long Covid would suitably value patients’ own experiences, which gives me confidence that their work will be of great benefit to many sufferers around the world.”
Lindsay Skipper has also taken part in Dr Faghy’s studies. The busy mum of two worked part-time as a physiotherapist, ran a weekly mother and baby singing and sign language group, and exercised five times a week.
Three years after she contracted Covid-19, her life has changed beyond recognition. “I can only walk very short distances,” she says. “At best that’s 200 metres once a day. I can’t cook, pick things up from the floor, or lift anything heavy.”
These are just some of the many ways that long Covid has impacted on Lindsay’s life – her once excellent memory has gone and she struggles to multi-task, while cognitive issues and damage to her voice mean she can’t make long phone calls. “I am losing my ability to remember what feeling well felt like,” she says.
Lived patient experience is central to Mark’s research and is an approach that is advocated by Long Covid Support, as Natalie explains: “It is imperative that patients are at the heart of research, working as equal partners with scientists, and that learnings are shared between all chronic post-viral conditions. Patients have specialised knowledge of their disease and will have to live with the consequences of research.”
Hope for the future
Patients are central to a new project that has just started – working with its partners, the University will be exploring the use of anti-viral medications to treat long Covid symptoms. Dr Faghy explains: “One of the mechanisms that has been postulated for long Covid is viral persistence. Once the infectious phase has happened, you retain some of the virus – viral reservoirs have been found in the brain and the gut. Anti-viral medications are licensed in the UK and globally for reducing the severity of acute infection following Covid-19 but to date there is little research that has investigated their use with long Covid patients.
"We’re working with a team of partners from University Hospitals of Derby and Burton NHS Foundation Trust, the University of Exeter, and the Royal Devon University Healthcare NHS Foundation Trust on a trial to determine whether antiviral medications over a short period of time in people that have confirmed long Covid is sufficient to reduce the size of these viral reservoirs and also reduce the severity of symptoms.”
This is only the second antiviral trial anywhere in the world to be funded, and the first in the UK and Europe. The stage two trial will take place over the next 12 months, and if successful, could lead to an international randomised control trial.
Recently Dr Faghy’s work has included another patient group – children and young people, through the Long Covid Kids charity. “We don’t know the long-term effects on children and young people at the moment. The biggest thing for them is getting recognition. There were some public health messages during the pandemic that suggested that children can’t get Covid. We know that’s not the case, they’re just as likely to get a Covid infection as adults, in some cases more likely because they’re frequently around people.”
Dr Faghy attended a Westminster health forum along with Long Covid Kids earlier this year: “One of the questions that we raised was, what’s the impact on the child’s education? Twenty per cent haven’t been able to return to school full-time or are having to be home-schooled. So one in five adults, 30 years from now, might not have the skills, knowledge or education to fill those roles that we need in society.”
Sammie McFarland, CEO and Founder of Long Covid Kids, has recently been made a Royal Voluntary Service Coronation Champion in recognition of her work. She adds: “Long Covid Kids are delighted to have developed a collaborative partnership with the University of Derby to help us achieve our vision: recognition, support and recovery options for long Covid and related illnesses in children and young people. Long Covid is a complex health condition that requires treatment options. The broader impacts on children and their family units are only just coming to light; the health and education experiences of children and families need to be at the forefront of service and policy development to support the best possible chance of recovery.”
For Dr Faghy, the key to solving the mystery of long Covid and finding treatments, is to better understand this very complex condition – something that has implications for other long-standing health conditions too. “We are part of multiple national and international networks that are working together to understand this. There have been lots of chronic conditions, including long Covid, where there just isn’t sufficient understanding – when people are looking at it they’re doing so through one lens when they should be looking at the bigger picture. We’re on a long road – and the way we’ll get there is by working together.”
Find out more about Dr Mark Faghy and his research.
Written by Heather Turley
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