Preprint Challenges of visibility and inclusion in Long COVID: a population-based interview study, 2025, Emily Cooper et al

Abstract
Introduction: People with Long Covid report a wide range of symptoms and inconsistent responses when seeking clinical diagnosis and support. Much of the qualitative research on Long Covid has been based on people attending specialist clinical services or who have accessed support groups. We describe the varied ways in which a diverse group of people in a community sample experience, recognise and manage persistent symptoms following COVID-19.

Methods: Qualitative interview study nested within the large, community-based REal-time Assessment of Community Transmission (REACT) study in England. Participants reporting persistent symptoms following COVID-19 were asked for consent to be contacted about a follow-up interview. We then purposively sampled by age, gender, ethnicity and symptom severity and conducted 60 interviews. Analysis was carried out using a reflexive thematic analysis approach.

Results: Participants were an ethnically diverse group aged between 18 and 80 years who reported symptoms following COVID-19 for between a few months and more than two years. Many had not accessed clinical care or specific Long Covid support, and some did not identify with the category of long covid, rendering their experiences largely invisible. Participants highlighted the ways in which they self-manage symptoms within this context, and the varied burden of coping with ongoing health problems.

Conclusion: This diverse sample of people with Long Covid report a range of challenges managing this emerging and contested condition, with uncertainty affecting their own understanding and the validation they receive from professionals, family and friends. These challenges intersect with others such as racism, and are compounded by a lack of specific resources for Long Covid as well as over-stretched health services in the UK. Nevertheless, people show resilience in their self-management, seeking information and support from a range of sources.
LINK

 

I mean, yes, sure, but what does this add that we didn't 1) know 5 years ago and 2) patients have repeatedly said millions of times? If the first 100 studies showing that haven't made a dent, it's really past time to revisit a system that just keeps cranking them out. Even if it's a good study. We've known this stuff literally for decades. Why not expand on that? Follow up? Go deeper? It's always pilot/phase 1 level studies that generally explore in vague generalities. Nothing is being built on top of it. It's like laying down 5000 foundations when not a single house has been built, but continuing to focus only on the foundations.

Also: medrxiv? Neat. Hadn't noticed it before. Open source is the future of academia.