Symptom patterns and triggers of Long Covid: findings from a longitudinal online survey

BACKGROUND: Long Covid (LC) is a multi-system often disabling condition that develops following a SARSCoV2 infection. We aimed to characterise the pattern and triggers of LC symptoms. METHODS: Data from a one-year follow-up of an online survey originally conducted in November 2020 were used. Respondents were adults with LC following confirmed or probable COVID-19 who were not hospitalised in the first two weeks of illness. The baseline survey recruited mostly from support groups using convenience non-probability sampling. The content of both the baseline and follow-up surveys was co-produced with people living with LC. RESULTS: 1153 participants described their current health in the 1-year follow-up survey in November 2021 (530 with established clinical diagnosis of LC). The mean age was 47.7 years (standard deviation 10.6) with 84% females, 83% UK-based, 78% university-qualified and 90% reporting good to excellent health before SARSCoV2 infection. Only 5% of participants reported full recovery, and 45% reported a constant pattern of illness compared to 17% at baseline. Out of 637 participants reporting fluctuating or relapsing pattern, 40% reported that their illness was usually triggered by an identifiable factor. A further 30% reported that their illness generally followed a set/cyclical pattern but was occasionally triggered by something, and 10% reported that they had been unable to identify a trigger. Common triggers were physical activity (44%), stress (40%), cognitive effort (27%), social effort (25%), and work (22%). 96% of participants reported getting vaccinated, with 22% reporting improvement, 17% worsening, and 50% no change in illness after vaccination. CONCLUSIONS: Needing to avoid activities that trigger symptoms means that individuals will have to adapt life routines. This has the potential to widen health inequalities and increase hardship in individuals whose life circumstances and job types may not allow them to make necessary adaptations. KEY MESSAGES: • Symptoms pattern in Long Covid can be constant or fluctuating/relapsing triggered by certain activities. • Having LC often means adapting daily activities to reduce the chance of triggering symptoms.