ReviewPain reports2021
Patient-Led Research Collaborative: embedding patients in the Long COVID narrative.
Review in Pain reports, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 52 papers, 2 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
52 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Between silence and solutions: a global guideline review of long COVID care and services in Australia.BMC health services research · 2026Pooled it
- Prevalence of post-COVID-19 symptoms in hospitalized and non-hospitalized COVID-19 survivors: A systematic review and meta-analysis.European journal of internal medicine · 2021Pooled it
- Article
- Immunological Mechanisms and Machine Learning Applications in Post-COVID-19 Syndrome: A Narrative Review.Microorganisms · 2026Article
- The next phase in Long COVID research: addressing the ethical challenges in trials of disease-modifying treatments.EClinicalMedicine · 2026Review
- A distinct monocyte transcriptional state links systemic immune dysregulation to pulmonary impairment in long COVID.Nature immunology · 2026Article
- Telehealth-Based Ketogenic Metabolic Therapy With Lifestyle Interventions for Post-viral Illness: A Research Brief of Patients' Experiences.Journal of patient experience · 2026Article
- Designing Nutrition Studies for Long COVID and Related Infection-Associated Chronic Illness: Qualitative Insights From a Patient-Reported Evaluation of Ketogenic Metabolic Therapy.Journal of patient experience · 2026Article
- Article
- Age-Related Changes in the Clinical Picture of Long COVID.Journal of the American Geriatrics Society · 2025Article
- Community Engagement in Long Covid Research: Process, Evaluation and Recommendations From the Long COVID and Episodic Disability Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Methodology for a COVID-19 Recovery Surveillance Study Conducted Through an Academic-State Partnership.Public health reports (Washington, D.C. : 1974) · 2025Article
- Clinical Phenotyping of Long COVID Patients Evaluated in a Specialized Neuro-COVID Clinic.Annals of clinical and translational neurology · 2025Article
- Lived experience is essential for innovation in biomedical research.Nature reviews. Nephrology · 2025Article
- Assessing the Impact of Post-COVID Clinics on 6-Month Health Care Utilization for Patients With Long COVID: A Single-Center Experience.Mayo Clinic proceedings. Innovations, quality & outcomes · 2025Article
- Prevalence and characteristics of post-acute sequelae of COVID-19 in recovered patients.Frontiers in public health · 2025Article
- Episodic disability framework in the context of Long COVID: Findings from a community-engaged international qualitative study.PloS one · 2025Article
- LISTEN: lived experiences of Long COVID: a social media analysis of mental health and supplement use.Frontiers in big data · 2025Article
- Through Their Eyes: Using Photovoice to Capture the Capacity-Building Journey of Long Covid Patient Experts.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Challenges in Receiving Care for Long COVID: A Qualitative Interview Study Among Primary Care Patients About Expectations and Experiences.Annals of family medicine · 2024Article
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
A large subset of patients with coronavirus disease 2019 (COVID-19) are experiencing symptoms well beyond the claimed 2-week recovery period for mild cases. These long-term sequelae have come to be known as Long COVID. Originating out of a dedicated online support group, a team of patients formed the Patient-Led Research Collaborative and conducted the first research on Long COVID experience and symptoms. This article discusses the history and value of patient-centric and patient-led research; the formation of Patient-Led Research Collaborative as well as key findings to date; and calls for the following: the acknowledgement of Long COVID as an illness, an accurate estimate of the prevalence of Long COVID, publicly available basic symptom management, care, and research to not be limited to those with positive polymerase chain reaction and antibody tests, and aggressive research and investigation into the pathophysiology of symptoms.
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.