Characterizing long COVID in an international cohort: 7 months of symptoms and their impact
Open accessPublished version of a preprint
Abstract
BACKGROUND: 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. METHODS: 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. FINDINGS: 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. INTERPRETATION: 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. FUNDING: All authors contributed to this work in a voluntary capacity. The cost of survey hosting (on Qualtrics) and publication fee was covered by AA's research grant (Wellcome Trust/Gatsby Charity via Sainsbury Wellcome center, UCL).
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Identifying subjects who are at risk of higher perceived loneliness and related psychological factors is particularly important in the context of long COVID syndrome.
“Identifying subjects who are at risk of higher perceived loneliness and related psychological factors is particularly important in the context of the so called “long COVID” syndrome [50]”
From Psychological correlates of perceived loneliness in college students before and during the COVID-19 stay-at-home period: a longitudinal study (2023) · cites this paper as [50]
The Results (Neuropsychiatric symptoms; page unavailable) report emotion-and-mood symptoms among respondents with long COVID, supporting the relevance of psychological factors. The paper does not assess perceived loneliness or identify who is at higher risk of it, so it does not support that specific rationale for identifying at-risk subjects. (LLM, conf=0.82)
Experimental — accuracy not yet measuredThese symptoms can endure up to 6-7 months and even longer.
“These symptoms can endure up to 6–7 months and even longer [[1], [2], [3], [4], [5]].”
From Female gender is associated with long COVID syndrome: a prospective cohort study (2022) · cites this paper as [3]
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- Authors
- Davis, H. E., Assaf, G. S., McCorkell, L., Wei, H., Low, R. J., Re'em, Y., Redfield, S., Austin, J. P., & Akrami, A.
- Affiliations
- Patient-Led Research Collaborative (US)
- Oregon Health & Science University (US)
- Corresponding author
- Akrami, Athena
- ORCID
- Venue
- eClinicalMedicine
- Publisher
- Elsevier BV
- Published
- 2021-08
- Volume
- 38
- Pages
- 101019
- ISSN
- 2589-5370 (ISSN-L)
- PMC
- PMC8280690
- OpenAlex
- W3184339862
- Cited by
- 2,881
- References
- 46
- Citations by year
- 2026: 299 · 2025: 492 · 2024: 594 · 2023: 692 · 2022: 617 · 2021: 186 · 2015: 1
- FWCI
- 249.99
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- EClinicalMedicine (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Wellcome Trust
- Topics
- Health Sciences › Medicine › Neurology › Long-Term Effects of COVID-19
- Health Sciences › Medicine › Infectious Diseases › COVID-19 Clinical Research Studies
- Social Sciences › Psychology › Clinical Psychology › COVID-19 and Mental Health
- Keywords
- long COVID, symptom clusters, fatigue, post-exertional malaise, cognitive impairment, symptom recurrence, work disability, loss of taste and smell, outpatients
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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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