Knowing Long COVID: Epistemic Barriers to Recognition and Care
Marc Jamoulle, Martin Spanoghe, Bram Rolus, Paul Thielemans, Daniel WidmerObjective
This study explored the epistemic barriers affecting the recognition and care of Long COVID. It sought to understand how uncertainty is produced, distributed, and navigated among clinicians, researchers, and patients, and how these dynamics shape care pathways and patient experiences.
Methods
We conducted a qualitative analysis grounded in more than 400 accounts of clinical encounters, alongside more than 100 patient testimonies collected through the
Results
Clinical uncertainty was unevenly distributed among clinicians, researchers, and patients. From the patient perspective, these asymmetries frequently manifested as symptom minimisation, psychosocial reframing, delayed investigation, and fragmented care. Persistent gaps in recognition and care were linked to epistemic injustice and gender bias, alongside limitations associated with positivist medical training models. In response, patients increasingly drew on biomedical evidence and collective forms of lay knowledge, fostering the emergence of “expert patients”.
Conclusion
Long COVID may be understood as a “total social fact,” revealing structural vulnerabilities within and beyond healthcare systems. More integrated, reflexive, and relational models of care are needed to improve recognition and management while reducing iatrogenic risk. The findings identify actionable pathways towards more epistemically responsible, coordinated, and patient-attuned care.