ArticleSocial science & medicine (1982)2021
How and why patients made Long Covid.
Article in Social science & medicine (1982), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 437 papers, 6 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
437 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Pooled it
- Definitions and symptoms of the post-COVID syndrome: an updated systematic umbrella review.European archives of psychiatry and clinical neuroscience · 2025Pooled it
- The prolonged health sequelae "of the COVID-19 pandemic" in sub-Saharan Africa: a systematic review and meta-analysis.Frontiers in public health · 2025Pooled it
- Psychosocial Aspects of the Lived Experience of Long COVID: A Systematic Review and Thematic Synthesis of Qualitative Studies.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Post-COVID syndrome prevalence: a systematic review and meta-analysis.BMC public health · 2024Pooled it
- What is the impact of long-term COVID-19 on workers in healthcare settings? A rapid systematic review of current evidence.PloS one · 2024Pooled it
- Cost-Effectiveness of a Personalised Self-Management Intervention for People Living With Long Covid: The LISTEN Randomised Controlled Trial.Health expectations : an international journal of public participation in health care and health policy · 2025Trial
- Personalisation at the Core of Success: Process Evaluation of the LISTEN Randomised Controlled Trial Evaluating a Personalised Self-Management Support Intervention for People Living With Long Covid.Health expectations : an international journal of public participation in health care and health policy · 2025Trial
- Effects of a symptom-titrated exercise program on fatigue and quality of life in people with post-COVID condition - a randomized controlled trial.Scientific reports · 2024Trial
- Management of long COVID-19 in children and adolescents: from diagnosis to therapeutically approaches.Annals of medicine · 2026Review
- Effect of Long COVID-19: Self-Reported Questionnaires and Objective Olfactory and Gustatory Evaluations.Diseases (Basel, Switzerland) · 2026Article
- Contested illness and communication: Positioning long Covid in online discussion forums.Journal of health psychology · 2026Article
- A mixed-methods study comparing clinical and patient-reported perspectives on long COVID: insights from electronic health records and narrative journal entries.BMC infectious diseases · 2026Observational
- Post-Acute Sequelae of COVID-19 (PASC) in Hospitalized and Ambulatory Patients: A Comparative Study.Journal of clinical medicine · 2026Article
- Spike RBD drives sustained Parkinson's disease progression via microglia-neuron crosstalk-mediated RTP801 upregulation.Journal of advanced research · 2026Article
- Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID.Communications medicine · 2026Article
- Co-Creating Publicly Available Resources to Increase Awareness of and Support for Long Covid Among Ethnic Minority Communities.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Consortium-Based Patient and Public Involvement and Engagement for Long COVID Research: A Pirit-Focused Impact Evaluation of the PHOSP-COVID Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Vital yet Fragile: Informal Networks of Support Among Young People Navigating Long Covid.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Considerations for epidemiological studies investigating emerging post-acute infection syndromes: Long Covid as a case study.EClinicalMedicine · 2026Review
377 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
Patients collectively made Long Covid - and cognate term 'Long-haul Covid' - in the first months of the pandemic. Patients, many with initially 'mild' illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than laid out in initial reports from Wuhan. Long Covid has a strong claim to be the first illness created through patients finding one another on Twitter: it moved from patients, through various media, to formal clinical and policy channels in just a few months. This initial mapping of Long Covid - by two patients with this illness - focuses on actors in the UK and USA and demonstrates how patients marshalled epistemic authority. Patient knowledge needs to be incorporated into how COVID-19 is conceptualised, researched, and treated.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.