The contested meaning of "long COVID" - Patients, doctors, and the politics of subjective evidence.
Roth, Phillip H, Gadebusch-Bondio, Mariacarla·Social science & medicine (1982)·2022
This study examines how patients created and spread the term "long COVID" by sharing their personal experiences online, which eventually led doctors and health officials to recognize it as a real condition. The researchers compare this process to how ME/CFS patients have struggled for recognition over decades, showing that social media and patient voices can shape how medicine understands and responds to complex illnesses.