Patients who experience long Covid have reported more than 200 symptoms across 10 organ systems*, in the largest international study of ‘long-haulers’ to date, led by UCL scientists together with a patient-led research collaborative.
A significant number of patients with COVID-19 experience prolonged symptoms, known as Long COVID. Few systematic studies have investigated this population, particularly in outpatient settings. Hence, relatively little is known about symptom makeup and severity, expected clinical course, impact on daily functioning, and return to baseline health.
We conducted an online survey of people with suspected and confirmed COVID-19, distributed via COVID-19 support groups (e.g. Body Politic, Long COVID Support Group, Long Haul COVID Fighters) and social media (e.g. Twitter, Facebook). Data were collected from September 6, 2020 to November 25, 2020. We analyzed responses from 3762 participants with confirmed (diagnostic/antibody positive; 1020) or suspected (diagnostic/antibody negative or untested; 2742) COVID-19, from 56 countries, with illness lasting over 28 days and onset prior to June 2020. We estimated the prevalence of 203 symptoms in 10 organ systems and traced 66 symptoms over seven months. We measured the impact on life, work, and return to baseline health.
For the majority of respondents (>91%), the time to recovery exceeded 35 weeks. During their illness, participants experienced an average of 55.9+/- 25.5 (mean+/-STD) symptoms, across an average of 9.1 organ systems. The most frequent symptoms after month 6 were fatigue, post-exertional malaise, and cognitive dysfunction. Symptoms varied in their prevalence over time, and we identified three symptom clusters, each with a characteristic temporal profile. 85.9% of participants (95% CI, 84.8% to 87.0%) experienced relapses, primarily triggered by exercise, physical or mental activity, and stress. 86.7% (85.6% to 92.5%) of unrecovered respondents were experiencing fatigue at the time of survey, compared to 44.7% (38.5% to 50.5%) of recovered respondents. 1700 respondents (45.2%) required a reduced work schedule compared to pre-illness, and an additional 839 (22.3%) were not working at the time of survey due to illness. Cognitive dysfunction or memory issues were common across all age groups (~88%). Except for loss of smell and taste, the prevalence and trajectory of all symptoms were similar between groups with confirmed and suspected COVID-19.
Patients with Long COVID report prolonged, multisystem involvement and significant disability. By seven months, many patients have not yet recovered (mainly from systemic and neurological/cognitive symptoms), have not returned to previous levels of work, and continue to experience significant symptom burden.
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Fig. 2Symptom prevalence estimates (non-neuropsychiatric symptoms). Bars represent the percentage of respondents who experienced each symptom at any point in their illness. Symptoms are categorized by the affected organ systems. When all rows in a given panel use the same denominator, the first row, labeled “All,” indicates the percentage of respondents who experienced any symptoms in that category. Error bars are bootstrap 95% confidence intervals. In Fig. 2b, Sexual dysfunction is broken up into male (Sexual dysfunction – M) and female (Sexual dysfunction – F). “Cis M” refers to cisgender males, “Cis F” refers to cisgender females, and cisgender females are further broken down by age group: “Cis F <40″ indicates cisgender females age 39 or younger, “Cis F in 40s” indicates cisgender females age 40 to 49, and “Cis F >49″ indicates cisgender females age 50 or older.