Recognition of long-COVID – a reflection

Carolyn Chew-Graham, a GP in Manchester, and Researcher at Keele University: The COVID-19 pandemic and restrictions from March 2020 brought many changes in the way people were able to contact their general practice, with an increase in ‘remote consulting’ via online or on the telephone.

During this time as a GP in a busy practice, I became aware of people who reported having suffered from what sounded like COVID-19 infection in March/April 2020 presenting with odd symptoms in late spring/summer: chest pain, shortness of breath, fatigue, headaches, skin rashes, indigestion and abdominal pains. I had no idea how to respond as this seemed to be a new phenomenon, and symptoms varied between different patients. I discussed these presentations with my colleagues and we all agreed this was something puzzling and new.

Tracy Briggs, a Clinical Academic and an expert by experience: I am what is known as a ‘long hauler’. Until March I was a busy 43-year-old, working full time as a Clinical Academic, a hands-on mum, and someone that enjoyed physical activities such as commuting to work by bike and rambling. This year I developed ‘mild’ COVID – which means I did not require hospital admission –  though I experienced 14 days of rigors, sweats, cough, burning throat and chest pain, palpitations, difficulty swallowing, and an associated 5kg weight loss. I am grateful to be alive.

A few months on, after further investigations that were all normal, I still wasn’t getting better. How was I going to return to work, look after my family, ‘be me’ when I couldn’t even hold a conversation or make a cup of tea? A friend then sent me an illuminating newspaper article titled ”Weird as hell’: the Covid-19 patients who have symptoms for months‘. I cried with relief: there are others in a similar situation who didn’t need hospital admission but had ongoing symptoms. Subsequently, I was involved in writing a newspaper article on the subject.

Carolyn: As a bit of a twitter addict, I became aware of people tweeting about their problems that had occurred after what might have been a mild infection with COVID-19. People were describing not having had access to a test for COVID, and not getting any help with their ongoing symptoms. I found the narratives distressing, and reminiscent of ones I had seen in my previous research with people with medically unexplained symptoms. It was obvious that we were witnessing a new, but very real problem.

As a researcher, I felt that there was a need for investigation in this area. So, over the summer of 2020, I put together a research team, developed the research idea with ‘experts by experience’, applied for ethics approval and then conducted the study in parallel with an evolving evidence-base. The research team have now conducted 30 interviews with people struggling with symptoms of ‘long-COVID’ – by telephone or a video-platform. The first paper was published on 14th October, and received publicity nationally and internationally.

Tracy: It has been a long seven months, on a very undulating path. I still have episodes where I end up on the floor at the top of stairs with a heart rate of 150 beats per minute, unable to breathe and with oxygen saturations of 92–94%. I am not back at work and I am able to do very little around the house. It is scary.

Living with a condition that is not yet understood has been difficult. I have tried to build my own multi-disciplinary team around me: I am very lucky to have some wonderful, supportive friends and colleagues in medicine, physiotherapy and nutrition to help me to try to move forwards. It is imperative to have a GP who listens, supports and, when appropriate, refers on. I know many fellow long haulers who have been less fortunate, with repeated medical gas-lighting and disbelief of symptoms. I myself have been told on two separate occasions that my symptoms are all a result of anxiety.

I am now a member of a group of long haul UK doctors with whom I have shared experiences and coping strategies for health, and found the occupational advice invaluable. I have had the opportunity to feed into research, including a number of important surveys of symptoms, which are crucial to increase awareness and understanding of long-COVID. I have been appointed community representative for the COVID-19 ACT-Accelerator Therapeutics Pillar, a global initiative whose aim is to save lives and reduce severe COVID-19 disease. 

Carolyn: The initial aim of my research was to raise awareness in primary care of the phenomenon of ‘long-COVID’, legitimising the concerns of patients who have these symptoms and encouraging them to consult their practice for help – including referral for investigation to exclude serious pathology, as well as providing ongoing support. We have fed the results of our study to NICE, who are developing guidance for commissioners on the services needed for people with long-COVID.

Tracy: I do not know what the future holds for me. Will I get better? Will I get back to work? Will I walk up the stairs again without thinking Ben Nevis was once easier? What will happen if I contract COVID-19 again? However, I do hope, as per a letter I signed with colleagues, that through increased understanding there will be care and compassion for all those affected by long-COVID; that clinical services that combine specialists who can provide the necessary holistic investigation and follow-up will be accessible throughout the country; that meaningful rehabilitation will be developed offering person-centred programmes. Finally, I hope that increased awareness of long-COVID will guide policy, because as the pandemic continues, if 10% of those affected by COVID 19 could develop on-going symptoms ( the medical, economic and social costs of this are potentially devastating.

Comments (2) Add yours ↓
  1. Brian Dye Lawyer

    This is a very timely reflection.

    We are dealing with a virus which, unless restrained, has an exponential growth function.

    Certainly, it manifests itself in direct and indirect excess deaths. Direct deaths are caused by the virus itself; indirect deaths are caused by the knock on effects of the virus. A good estimate of the running total of excess deaths during 2020 is kept by the statisticians at the Financial Times. Their present estimate is about 65,500 excess deaths in the UK so far this year. Here is a reference to the Twitter feed where the FT post their data:

    What, however, merely looking at excess deaths misses is that there is plainly a huge amount of people whose long term health is undermined by “long Covid”. Data on long Covid numbers of people is harder to find and substantiate. A recent publication by the Tony Blair Institute suggests the number is about 60,000 so far in 2020, based, inter alia, on some (cited) work by Professor Tim Spector.

    We know that excess deaths mainly disproportionately affect the elderly. What is very notable, however, is good recent work that shows that “long Covid”, where it strikes, does not spare young individuals, even the young who are largely without risk factors, and even those without pre-existing disease or hospitalisation, many of whom are at risk of being struck with long term significant, possibly multi, organ disease burden. I commend a recent pre-print paper below, which is tackling this subject:

    This goes, I think, to show that we can’t, as some people have suggested, just to decide to let the disease rip through the young, even if we could isolate and protect the elderly (which SAGE anyway says we can’t). If and when we were to let Covid rip through the young, we would be accepting an exponential growth in long Covid cases in young people, as well as, on SAGE’s advice, more deaths in the old. If the FT and the Tony Blair Institute are right, the overall impact, so far in 2020, of Covid, taking into account “long Covid”, is about 125,500 (65,500 + 60,000), with more to come.

    October 27, 2020 Reply
  2. Roger Kirby Professor of Urology

    In July, NHS England hailed a “ground breaking” new service with the launch of a website with information for patients on how to recover from covid following hospital discharge. It promised a second phase of the service would allow patients to be connected with health professionals for more tailored support, to be launched “later this summer”.

    But in a memo sent to professional bodies on 30 October, NHSE said the national roll-out was delayed until at least January 2021, with no date confirmed for the launch beyond that.

    Documents on the website itself said a “first cohort of patients from Leicester will begin to work through the programme” in November, with a further rollout scheduled for early December, followed by a “refresh” in January 2021 and a “full national rollout accessible across the country” at an unspecified date beyond that.

    The second phase is seen as vital for ensuring that people with covid receive personalised support to help them recover from its debilitating effects, especially as a separate face-to-face rehabilitation programme was scrapped due to costs.

    November 16, 2020 Reply

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