What a difference a year makes. We now know so much more—and in some ways, so much less—than we did then about living with covid-19 and its aftermath. A year ago, we may have made assumptions about a severe acute infection with predictable recovery tail, if longer for some people than others. But we now know that around one in ten of those with the virus will experience instead a “rollercoaster” of fluctuating and complex symptoms, with periods of recovery and relapse over many months. Those who go on to develop long covid are difficult to predict, not linked to severity of disease at the start. Symptoms might include, but not be limited to brain fog, anxiety, breathlessness, fatigue, muscle pain, palpitations and chest heaviness.  We still know very little about the clusters and patterns of these symptoms and what this might mean for ongoing treatment and monitoring.  

A report out this week by Elaine Maxwell and colleagues at NIHR sets out the state of knowledge on long covid. It focuses on recent published research framed around questions of the nature and causes of long covid and approaches to treatment. This evidence (complementing formal guidelines) was considered by a group with expertise of different kinds. This included people living with long covid as well as those working in fields of rehabilitation, respiratory, psychology, occupational therapy, community nursing, and acute medicine. Making sense of this emerging evidence together, they established what was known as well as gaps in current knowledge. It provides a useful roadmap for patients and professionals—if only to chart the known unknowns.

This exercise was accompanied by a survey of more than 3000 people with long covid. This provided a touchpoint running alongside formal evidence to illustrate and highlight issues. This included limits in ability to work reported by 80% of respondents and ability to care for family impaired in just under a third. This dipstick of lived experience echoed themes from the limited number of in-depth qualitative research studies to date. That includes the shame and stigma reported by people, many without confirmed infections given early policy on covid testing, and problems in accessing and navigating services.

What we call long covid may be better described as a number of syndromes, all requiring different responses and management. As a multisystem disease it highlights problems in fragmented services and pathways. More than sixty long covid clinics have now been set up by NHS England, taking referrals from GPs for people presenting with symptoms which can be assessed by multidisciplinary teams. It will be interesting to see how these work—an evaluation of the perhaps parallel system of memory clinics showed considerable variation in how these were staffed and what was provided in terms of post-assessment treatment and support.

There are many important areas of uncertainty where more research is needed, including evaluation of new service models.  The report identifies other gaps, including learning from other parallel conditions (while keeping an open mind on the distinct and emerging trajectory of this disease) and the need for people with lived experience to be equal partners in identifying future research needs.  

We are making progress. Last month, four major new research studies were announced by NIHR and UKRI. These include ambitious programmes to chart the natural history and patterns of disease, risk factors, and responses with platforms for developing and testing new treatments and services, including digital support. One focuses particularly on children and young people. Studies use a variety of approaches from population-based intelligence to linked data and prospective cohorts. This substantive research should advance our understanding of long covid.   

All studies will engage people with lived experience in shaping research and outputs. If we have learned one thing over this year, it is to listen to the patient. One interesting paper shows how people with long covid “collectively made” the condition, that is named and described the constellation of persistent and unstable symptoms, challenging early assumptions about the nature of the illness. People with long covid used social media to give voice and support to a community and prompting policy and service action. Framing the problem is an important first step—perhaps similar to the drive to shape the narrative of clinical frailty as a condition which can be recognised, treated and potentially prevented. Kingdon argued that “policy windows” open when there is a well-defined narrative around a problem. People with long covid have pushed that window open and further research and growing clinical knowledge will provide more light in days to come.

Tara Lamont is senior scientific adviser (Evidence Use) at the Wessex Institute, University of Southampton.

Competing interests: TL was part of the steering group on this report.