E3 PreliminaryModerate confidencePEM not requiredMethods-PaperPeer-reviewedReviewed
Standard · 3 min
Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID.
Ziegler, Sarah, Raineri, Alessia, Nittas, Vasileios et al. · The patient · 2022 · DOI
Quick Summary
This study asked people with Long COVID what research questions matter most to them. Researchers created a group of 28 people with Long COVID and ME/CFS, plus a larger working group of over 240 people, who together identified 68 research questions and ranked which ones were most important. The top five priorities were: finding better treatments and rehabilitation, ensuring continuous care between doctors, improving access to healthcare, training healthcare providers to understand Long COVID, and studying Long COVID in children and teens.
Why It Matters
This study directly centers the voices of people with Long COVID and ME/CFS in defining what research should be funded and pursued, rather than relying solely on clinician or researcher priorities. By identifying concrete, patient-prioritized research gaps—particularly around treatment, healthcare access, and professional training—this work can guide resource allocation toward studies that address the most urgent unmet needs of affected communities.
Observed Findings
Sixty-eight research questions were generated and categorized into four domains with 14 subcategories.
Importance ratings ranged from 3.41 (sex-specific diagnostics) to 4.86 (medical treatment questions), indicating moderate-to-high relevance overall.
The five highest-priority topics were: treatment/rehabilitation/chronic care management, care continuity interfaces, healthcare structure availability, professional awareness/knowledge, and Long COVID prevalence in children/adolescents.
241 respondents completed the online evaluation (85.5% Long COVID, 14.5% ME/CFS, 7.1% relatives).
Inferred Conclusions
Patient-centered priorities differ from existing research agendas, emphasizing treatment, care coordination, and healthcare access over other research domains.
Multidisciplinary patient engagement (through Board and Working Group) is feasible and produces actionable research priorities.
The iterative citizen science methodology is transferable to other chronic disease research agendas.
Healthcare system-level barriers and professional knowledge gaps are as important to patients as biomedical research questions.
Remaining Questions
How do the priorities of this engaged citizen science cohort compare to priorities of Long COVID patients not involved in structured research processes?
What This Study Does Not Prove
This study does not test any treatments, establish causation, or provide clinical evidence. It does not prove which research questions are most scientifically tractable or feasible to answer; patient priority does not necessarily reflect answerability. The findings reflect the priorities of the specific participants engaged and may not represent all Long COVID or ME/CFS populations globally.
Tags
Phenotype:PediatricLong COVID Overlap
Method Flag:Exploratory OnlyMixed CohortWeak Case Definition
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
Contribute
Private, reviewed by a human. Not a public comment thread.
Which of the five prioritized topics are most feasible to address in near-term research, and what are the resource requirements?
How should researcher and funder communities operationalize these patient priorities into funded studies, and what mechanisms exist to measure responsiveness?
Do research priorities differ meaningfully between Long COVID and ME/CFS subgroups, or across demographic categories?