Contested Illness and Alternative Expertise Networks in Global Health: Post-COVID Syndrome in Brazil

Contested illnesses such as long COVID or post-COVID syndrome create heightened uncertainty for patients as they navigate diagnosis and treatment. To lessen this uncertainty, patients in the United States and Europe have relied on patient activism and patient-led research to seek recognition from medical, scientific and political institutions. However, patients in other countries rely on different sets of strategies. Drawing on a survey (n = 144) and interviews (n = 32) of patients with post-COVID syndrome recruited via social media in Brazil, we found common experiences of psychologisation and dismissal of patient experiences. To combat this dismissal, some patients turned to each other online. However, patient groups showed a preference for advice from credentialled experts rather than asserting the embodied expertise of patients. Similarly, in the construction of alternative expertise networks, patients continued to rely on credentialled experts in the private healthcare system and from foreign and nonstate experts. We discuss how these alternative expertise networks may diminish the possibility of collective mobilisation and how those who are more socioeconomically disadvantaged and under-represented in our study will likely endure additional challenges.