Ziegler, Sarah, Raineri, Alessia, Nittas, Vasileios et al. · The patient · 2022 · DOI
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.
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.
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.
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 →
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