What can we learn about recovery from Long Covid from people in Calderdale who have partially or fully recovered?

In-depth interviews were conducted with ten people who had made self-defined full or partial recoveries from long covid, and with five professionals working with people with long covid, in summer 2024. The interviewer had lived experience of Long Covid. A timeline methodology was used as a framework for talking through people’s recovery journeys in interviews. Narrative and thematic analysis was conducted.

The research drew on participatory methods. It was designed by a researcher with Long Covid, in partnership with the local peer support group. Participatory sessions to test understandings of emerging findings and co-develop recommendations were held with interviewees, members of the local support group, and local professionals in the project Steering Group.

There is no clear, accepted definition of recovery from Long Covid. Recovery  is difficult to assess clinically because the condition has multiple symptoms that vary between people and over time, and there are no definitive biomarkers for diagnosis by which recovery can be measured.

For the purposes of this research, we used interviewees’ subjective definitions of recovery – the person’s perception of their health, well-being and quality of life, and the extent to which they were able to conduct daily, work, social, physical, and leisure activities.

It was notable that people’s own perceptions of recovery differed to those of professionals. Professionals referring interviewees to the research, for example, sometimes used markers such as returning to work or being able to complete a long run as an indicator of nearly-full recovery. Individuals had more nuanced perceptions of recovery, for example explaining how a return to work could come at a high cost to their ability to exercise or engage socially, or that they were only able to run if they rested for several days before and afterwards.

Only one of the 10 people interviewed had returned to pre-long covid levels of functioning. Several had made fundamental changes to the way they lived, choosing to prioritise rest and self-care, in order to maintain a baseline level of functioning.

This was lived experience-led research conducted by a researcher with Long Covid. The research was funded by Calderdale Council and commissioned by the Long Covid Support Group Calderdale. It was guided by a Steering Group including professional and lived experience experts from the Long Covid Support Group Calderdale (LCSGC), Calderdale Council’s Public Health Team and Better Living Service, Calderdale Long Covid Clinic, Active Calderdale, Halifax Opportunities Trust and Shared Harmonies. The research was conducted in 2024/25.

We’d like to thank everyone involved in the research, including interviewees, Steering Group members and members of the Long Covid Support Group Calderdale. Special thanks to Dr Veenu Gupta and Dr Helena Holmes-McCoid for providing, respectively, peer support and supervision, and clinical supervision to the researcher.