Background Long Covid (LC) is a health condition that develops following SARSCoV2 infection, predominantly presenting with multiple multi-system symptoms that commonly fluctuate in intensity, and often resulting in functional disability limiting day-to-day activities. Because of the episodic nature of LC in some of those experiencing it, recovery is not straightforward to define. We aimed to characterise recovery from LC.

Methods Data from a one-year follow-up of people who participated in an online survey originally conducted in November 2020 were used. Respondents were adults with self-reported LC following confirmed (antigen or antibody) or suspected COVID-19 who were not hospitalised in the first two weeks of illness. The baseline survey recruited mostly from online support groups using convenience non-probability sampling. Both the baseline and follow-up surveys were co-produced with people living with LC including how to phrase the recovery questions.

Results 1153 participants responded to the follow-up survey in November 2021 (52%). The mean age was 47.7 years (standard deviation 10.6) with 84% females, 82.5% UK-based, 77.5% university-qualified and 90% reporting good to excellent health before SARSCoV2 infection.

86% of participants reported being ill for 18 months or more. 68.8% (n=792) stated that they are still experiencing LC symptoms and 4.7% (n=54) considered themselves fully recovered. 28% reported feeling the potential for relapse including 6% (n=3/54) of those who considered themselves recovered. Amongst those still experiencing symptoms, 39.7% (n=314) felt ‘stable’ but with a lower level of health/activity and 3.5% (n=28) felt ‘stable’ and close to pre-infection level of health/activity. Among those reporting not experiencing symptoms or feeling recovered (assumed to be between relapses), 15.5% (n=178) and 6.9% (n=79) felt ‘stable’ at lower level and close to pre-infection level respectively.

59% of participants reported never having a symptom-free day. 48.6% reported having received a diagnosis of LC with a further 28.1% reporting their doctor suspected LC. 42% reported having received a new diagnosis other than LC since COVID-19. 33.2% reported LC affected their ability to care for themselves, 19.3% care for children, 51.4% personal relationships, and 61.1% their work with 6.4% (n=74) losing and 11.7% (n=135) resigning or leaving their job.

Conclusion This study highlights the prolonged and commonly disabling nature of LC as well as the heterogeneity of life impact and recovery patterns. Research is needed in a representative population sample to further characterise recovery, associated episodic disability and potential adaptations to manage illness and avoid triggering relapse or symptom exacerbation.