One of the Institute of Mental Health’s leading clinical psychologists has helped to launch a new UK investigation into the evidence and impact of ongoing effects of COVID19. The findings reflect current research evidence and understanding of the long-term effects of ongoing, or ‘long’, COVID. Roshan das Nair (Professor of Clinical Psychology & Neuropsychology, University of Nottingham) contributed to the National Institute for Health Research’s (NIHR) ‘Living with COVID’ review, alongside a panel of UK experts.

‘Living with COVID’ draws on the most up-to-date expert consensus and published evidence, as well as the lived experience of both post-hospitalised and non-hospitalised COVID-19 patients, to better understand the impact of ongoing effects of COVID19, how health and social care services should respond, and what future research questions might be.

The review’s findings include:

• Ongoing COVID may not be one syndrome but possibly up to four different syndromes.
• A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system.
• A working diagnosis recognised by healthcare services, employers and government agencies would facilitate patient access to much needed support and provide the basis for planning appropriate services.
• There are powerful stories that ongoing COVID symptoms are experienced by people of all ages, and people from all backgrounds. We cannot assume that groups who are at low risk of life threatening disease and death during acute infections are also at low risk of ongoing COVID.

Symptoms - what the research so far tells us

The review finds that, while we are at an early stage of understanding the disease, a number of small surveys are reporting remarkably similar findings, with a wide range of recurring symptoms experienced by both post-hospitalised and non-hospitalised COVID-19 patients. These affect the respiratory system, the brain, cardiovascular system and heart, the kidneys, the gut, the liver and even skin. They can range in intensity and duration and do not necessarily present in a linear or sequential manner.

Such a wide range of symptoms creates diagnostic uncertainty, with the review suggesting that ongoing COVID may in fact be due to a number of different syndromes such as Post Intensive Care syndrome, Post Viral Fatigue syndrome and Long Term COVID syndrome and permanent organ damage, which some patients may be experiencing simultaneously.

The absence of a definition may impact the ability of patients to have their symptoms and experiences properly recognised and treated by healthcare services, which can in turn have a further psychological impact, especially for non-hospitalised patients who were never formally diagnosed.

Professor das Nair commented on the importance of recognising the long-term effects of the pandemic:

“It’s been a privilege to have worked with this expert steering group to better understand the issues around the long-term impact of COVID-19 (‘long-COVID’), because we know that people are reporting a myriad of long-lasting symptoms following COVID-19 infection, which need to be addressed quickly.

“We need to act now, with the best evidence we have, using what we’ve learnt from other health conditions and adapting them for use for COVID-19 groups, and coming up with creative, nimble, multidisciplinary services that support the whole person and not just treat individual symptoms.”

Dr. Elaine Maxwell, review author, Content Lead for the National Institute for Health Research’s Centre for Engagement and Dissemination said:

“This review highlights the detrimental physical and psychological impact that ongoing COVID is having on many people’s lives, and how healthcare services have at times struggled to manage these new and fluctuating patterns of symptoms and problems.

“Our aim is that healthcare services and staff will use this review to better understand the experiences patients have to deal with, and provide them with the access to treatment, care and support they need.  

“While research is at an early stage, listening to the testimony of people living with the ongoing effects of Covid19 provides rich insights into where we should focus future research, as well as the services we should be commissioning now.”

The review found that, with one or two exceptions, much of the commissioned research into COVID-19 so far looks at a single symptom or physiological system rather than the whole experience. The challenge now is to design research that integrates reported lived experience needs with clinical models of care, and which recognise the social and psychological consequences of ongoing COVID.

Read the full ‘Living with COVID19’ review via the NIHR Centre for Engagement and Dissemination.