ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 3 of them syntheses that pooled it.
What it found
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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
48 citing papers in PubMed, 3 syntheses or guidelines pooled it, 95 citations in OpenAlex.
- Patient and Professional Perspectives on Long COVID: A Systematic Literature Review and Meta-Synthesis.International journal of environmental research and 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
- Living with "long COVID": A systematic review and meta-synthesis of qualitative evidence.PloS one · 2023Pooled it
- 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
- Long COVID-19 in Spain: A Phenomenological Exploration of Health, Support, and Systemic Challenges.Healthcare (Basel, Switzerland) · 2026Article
- Young People Navigating the Looping Effects of Long Covid: Exhausting Agency and the 'Ongoing After' of Pandemic.Sociology of health & illness · 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
- A qualitative analysis of lived experiences, mental health treatment needs, and psychotherapeutic applications among veterans with long COVID.Psychological services · 2026Article
- Rethinking measurement of health outcomes in Long COVID: complexities, challenges and considerations.Health and quality of life outcomes · 2026Article
- Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.Journal of patient experience · 2026Article
- 'I Do Take the Number Seriously, but I Don't Let My Moods Depend on It': Negotiating Self-Tracking Data With People Living With Long COVID in the Netherlands, Austria and Switzerland.Sociology of health & illness · 2025Article
- Patients' experiences of living with Long Covid and their beliefs about the role of psychology in their condition.Journal of health psychology · 2025Article
- Living With Persistent Respiratory Symptoms of Long COVID: Qualitative Study Among Brazilian Adults 12 Months After Acute Infection.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Challenges of Inclusion: A Population-Based Interview Study of Long Covid.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Addressing Inequalities in Long Covid Healthcare: A Mixed-Methods Study on Building Inclusive Services.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Codeveloping a Novel Intervention for People With Post-COVID Condition: The Balance-ACT Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Health and social service provider perspectives on challenges, approaches, and recommendations for treating long COVID: a qualitative study of Canadian provider experiences.BMC health services research · 2025Article
- 'We Don't Have to Prove to People How We're Feeling': Understanding the Role of Peer Support Groups in Countering Epistemic Injustices in Long COVID at a US Centre.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Exploring Long Covid Prevalence and Patient Uncertainty by Sociodemographic Characteristics Using GP Patient Survey Data.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Rethinking 'Recovery': A Comparative Qualitative Analysis of Experiences of Intensive Care With COVID and Long Covid in the United Kingdom.Health expectations : an international journal of public participation in health care and health policy · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundIn 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid.
methodsUnlike any previous pandemic in history, online Covid communities and 'citizen science' have played a leading role in advancing our understanding of Long Covid. As patient-led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19-recovery.org at the beginning of the Covid-19 pandemic between April and September 2020.
resultsThe overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life-changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option.
conclusionsLong Covid does not easily fit into the dominant evidence-based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship. PATIENT CONTRIBUTION: The research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.
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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.