Nearly 75 researchers, physicians, caregivers, patients and representatives from patient associations participated in this meeting, either in person or via videoconference.
The meeting was organized by Claire Desnos, Cecilia Ramirez, and Dominique Zeliszewski (Communication/Scientific Mediation team), Morgane Bomsel (Team Leader at Institut Cochin), and Dominique Salmon (AP-HP, Alfred Fournier Institute). Two other researchers, Jérôme Estaquier (Inserm U1124, Université Paris Cité) and Nicolas Vodovar (CARE, Lariboisière Hospital), were present to answer questions.
After the presentation of the symposium's main scientific points, several patient associations took turns speaking briefly. This meeting brought together numerous patient associations affected by various conditions: Apres J20, Action Covid Long Les Oubliés du Covid, France Lyme, ESPOIRS, Winslow Santé Publique, Long Covid Belgium, Association Covid Long Enfants, AFEMISE, and Covid Long Solidarité.
Two hours of scientific questions and discussion followed, fulfilling our objective of sharing information and listening, judging by the numerous testimonials and exchanges in the videoconference chat, on social media, and by the questions from the audience.
Dialogue between patients, associations, clinicians, and researchers is essential to move forward together more quickly toward a better understanding of pathologies related to post-acute infectious syndromes, and toward the development of appropriate care and treatments in a longer term.
