Characteristics of long COVID: findings from a social media survey

ABSTRACT

BackgroundMany people are not recovering for months after being infected with COVID-19. Long Covid (LC) is a major public health problem that needs defining, quantifying and describing. We aimed to explore and develop understanding of LC symptoms following mild/moderate COVID-19 infection and describe its impact on daily life.MethodsThe survey was co-produced with people living with LC. Data was collected through an online social media survey mostly from online support groups using convenience non-probability sampling. The criteria for inclusion were adults with lab-confirmed or suspected COVID-19 infection managed in the community (non-hospitalised) in the first two weeks of illness. We used agglomerative hierarchical clustering to identify specific symptom clusters, and their demographic, and functional correlates.ResultsData from 2550 participants with a median duration of illness of 7.7 months (interquartile range (IQR) 7.4–8.0) was analysed. The mean age was 46.5 years (standard deviation 11 years) with 82.8% females and 79.9% UK-based. 90% reported good, very good or excellent health prior to infection. Most participants described fluctuating (57.7%) or relapsing LC symptoms (17.6%). The most common initial symptoms that continued were exhaustion, headache, chest pressure/tightness and breathlessness. Cough, fever and chills were prevalent initial symptoms that became less so as the illness progressed. Cognitive dysfunction and palpitations became more common beyond the acute phase. 26.5% reported lab-confirmation of infection (NAAT or antibody). The biggest difference in symptoms between those who reported testing positive and those who did not was loss of smell/taste. Physical activity, stress and sleep disturbance were the most common symptom triggers. A third (32%) reported they were unable to live alone without any assistance at six weeks from start of illness. 66.4% reported taking time off sick, (median 60 days, IQR 20, 129). 37% reported loss of income due to illness. Eighty four percent of participants reported ongoing symptoms affecting at least three organ systems. There were two main ongoing symptoms clusters;the majority cluster (88.7%) exhibited mainly chest, cognitive symptoms and exhaustion, and the minority cluster (11.3%) exhibited multi-system symptoms which had persisted from the start. The multi-system cluster reported more severe functional impact.ConclusionThis is an exploratory survey of LC characteristics. Whilst it is a non-representative sample, it highlights the heterogeneity of persistent symptoms, and the significant functional impact. To better characterise ongoing illness and prognosis, research is needed in a representative population-sample using standardised case definitions (to include those not lab-confirmed in the first pandemic wave).