Characteristics of Long Covid: findings from a social media survey

Abstract

Many people are not recovering for months after being infected with SARS-CoV-2. Long Covid has emerged as a major public health concern that needs defining, quantifying, and describing. We aimed to explore the initial and ongoing symptoms of Long Covid following SARS-CoV-2 infection and describe its impact on daily life in people who were not admitted to hospital during the first two weeks of the illness. We co-produced a survey with people living with Long Covid. We collected the data through an online survey using convenience non-probability sampling, with the survey posted both specifically on Long Covid support groups and generally on social media. The criteria for inclusion were adults with lab-confirmed (PCR or antibody) or suspected COVID-19 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. We analysed data from 2550 participants with a median duration of illness of 7.7 months (interquartile range (IQR) 7.4-8.0). The mean age was 46.5 years (standard deviation 11 years) with 82.8% females and 79.9% of participants based in the UK. 89.5% described their health as good, very good or excellent before COVID-19. The most common initial symptoms that persisted were exhaustion, chest pressure/tightness, shortness of breath and headache. Cough, fever, and chills were common initial symptoms that became less prevalent later in the illness, whereas cognitive dysfunction and palpitations became more prevalent later in the illness. 26.5% reported lab-confirmation of infection. The biggest difference in ongoing symptoms between those who reported testing positive and those who did not was loss of smell/taste. Ongoing symptoms affected at least 3 organ systems in 83.5% of participants. Most participants described fluctuating (57.7%) or relapsing symptoms (17.6%). Physical activity, stress and sleep disturbance commonly triggered symptoms. A third (32%) reported they were unable to live alone without any assistance at six weeks from start of illness. 16.9% reported being unable to work solely due to COVID-19 illness. 66.4% reported taking time off sick (median of 60 days, IQR 20, 129). 37.0% reported loss of income due to illness, and 64.4% said they were unable to perform usual activities/duties. Acute systems clustered broadly into two groups: a majority cluster (n=2235, 88%) with cardiopulmonary predominant symptoms, and a minority cluster (n=305, 12%) with multisystem symptoms. Similarly, ongoing symptoms broadly clustered in two groups; a majority cluster (n=2243, 88.8%) exhibiting mainly cardiopulmonary, cognitive symptoms and exhaustion, and a minority cluster (n=283, 11.2%) exhibited more multisystem symptoms. Belonging to the more severe multisystem cluster was associated with more severe functional impact, lower income, younger age, being female, worse baseline health, and inadequate rest in the first two weeks of the illness, with no major differences in the cluster patterns when restricting analysis to the lab-confirmed subgroup. This is an exploratory survey of Long Covid characteristics. Whilst it is important to acknowledge that it is a non-representative population sample, it highlights the heterogeneity of persistent symptoms, and the significant functional impact of prolonged illness following confirmed or suspected SARS-CoV-2 infection. To study prevalence, predictors 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).

Chronic fatigue and post-exertional malaise in people living with long COVID

“…Many participants were also living with breathing discomfort (air hunger and increased sensations of breathing effort), were unable to be physically active, had role limitations due to physical health problems, and rated their health as much worse compared to one year ago. Overall, symptom burden was not higher in people who received laboratory confirmation of COVID-19 compared to those with only an acute illness that was reasonably attributable to infection (in line with other data [66]), and comorbidities alone do not explain long COVID symptoms.…”

“I can’t cope with multiple inputs”: Qualitative study of the lived experience of ‘brain fog’ after Covid-19

“…Our findings of persistent, debilitating neurocognitive symptoms in people with long Covid are in alignment with several retrospective cohort studies [18] and online patient surveys [4,8,57,58]. Our study adds further context to explore the functional and psychosocial impact of such symptoms, their interaction with physical symptoms, and mitigating efforts by patients.…”

“…Long Covid, a "patient-made" term [3] embraces the formally-defined conditions of postacute Covid-19 syndrome (symptoms persisting between 4 and 12 weeks) and chronic Covid-19 (symptoms beyond 12 weeks) [7]. It is highly heterogenous in nature, with sufferers reporting a wide range of often-fluctuating symptoms amongst which fatigue, breathlessness, chest pain, post-exertional malaise, autonomic nervous system disruption, and cognitive dysfunction [6,8,9] are some of the most common. Whilst the underlying pathophysiology remains unclear, persistent viraemia [10], relapse or reinfection [11] inflammatory and immune reactions [12,13] , deconditioning [14] and psychological factors [15,16] have all been proposed as contributors.…”

The teachings of Long COVID

“…It has a wide range of symptoms, but the most common are exhaustion, breathlessness, muscle aches, cognitive dysfunction, including poor memory and difficulty concentrating, headache, palpitations, dizziness and chest tightness or heaviness. The nature of the symptoms is mostly relapsing, resulting in significant dysfunction and limitations in a relatively large proportion of sufferers 6,7 .During the past year, I have been advocating for Long COVID, as well as doing research on it. I experienced it after developing COVID-19 symptoms in March 2020.…”

“…forums to raise awareness on its significance, impact, and scale. I have also worked with other people living with Long COVID to research the characteristics of the illness 7 . Through this journey, I have learnt some lessons that apply not only to Long COVID but more widely to pandemic preparedness, equality, and social justice, and how medicine and society deal with similar chronic conditions.…”