Medecine sciences : M/SSep 14, 2026

Long Covid patients working together to shape research and care based on their experiences

Updated Sep 15, 2026

Abstract

Patient mobilization since 2020 has significantly influenced the recognition and management of Long Covid.

Knowledge from patients' experiences has been integrated into the clinical definition of Long Covid.
Collaboration between patients, clinicians, and researchers has shaped the organization of care pathways.
Participatory research models have emerged as a result of patient advocacy in Long Covid.
There are ongoing gaps in institutional support for prevention and investment in research and care related to Long Covid.

Simplified

Since 2020 Long Covid has prompted a global mobilization of patients, who have documented their symptoms, named the condition, and created support groups. This article analyses, through two associations, #ApresJ20 and Covid Long Enfants, how knowledge derived from patients' experiences has been integrated into the clinical definition of Long Covid, the organization of care pathways, and participatory research, in collaboration with clinicians and researchers. It highlights both the decisive contribution of this mobilization to the recognition and management of Long Covid and the persistent gaps in institutional support regarding prevention and investment in research and care.

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Long Covid patients working together to shape research and care based on their experiences

Abstract

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