“Long COVID”: The First Illness in History Named by Patients, 2026, Shiozaki

[forestglip]

“Long COVID”: The First Illness in History Named by Patients

Mari Shiozaki

Abstract
The COVID‑19 pandemic created a large population of individuals who continued to experience debilitating symptoms long after the acute infection had resolved. This chapter examines the emergence of Long COVID as both a biomedical condition and a patient‑defined illness category, illustrating how individuals with persistent symptoms challenged clinical assumptions tied to observable pathology.

Fatigue, cognitive impairment, autonomic dysfunction, and multisystem complaints often appeared despite normal test results, positioning Long COVID within a broader history of contested conditions such as ME/CFS. Patients frequently encountered dismissal or psychological attribution, experiences many described as medical gaslighting.

Digital communities became central in documenting symptoms, producing patient‑led research, and naming the condition “Long COVID,” a term later adopted by health institutions alongside biomedical labels such as PASC. By integrating patient narratives with emerging clinical and neurobiological evidence, advocacy reshaped public discourse and compelled agencies to develop guidelines, clinics, and research programs.

Ultimately, Long COVID exposes the limits of traditional diagnostic paradigms and underscores the need for interdisciplinary, patient-centered models of care that bridge biomedical science and social context. It offers critical lessons for how illness is recognized, contested, and legitimized in contemporary society.

Web | DOI | IntechOpen | Peer-reviewed book chapter | Open Access

 

[forestglip]

Titles of sections:

1. Introduction
2. Acute COVID-19 and the emergence of persistent illness
3. Patient narratives and early recognition
4. Patient support groups and digital communities
5. Naming Long COVID
6. Medical gaslighting in the context of Long COVID
7. Patient voices in treatment and research
8. Social and cultural implications
9. Conclusion

 

[Hutan]

Ultimately, Long COVID exposes the limits of traditional diagnostic paradigms and underscores the need for interdisciplinary, patient-centered models of care that bridge biomedical science and social context. It offers critical lessons for how illness is recognized, contested, and legitimized in contemporary society.

Hmm. Except that Long COVID is defined in a way that makes it unhelpfully broad; the existence of this term makes a major contribution to the muddle. And, it seems to offer people with ME/CFS-like disease from 2020 onwards a way to avoid the perceived stigma of accepting an ME/CFS diagnosis. The rise of the name Long COVID has effectively siphoned both patients and effective advocates away from the ME/CFS community.

I think I could make a pretty good argument that the name 'Long COVID' and its adoption by researchers has actually not been helpful, and certainly the ongoing acceptance of the very broad definition is having a materially negative effect on the effectiveness of research into post-infection conditions.

 

[Jonathan Edwards]

I think I could make a pretty good argument that the name 'Long COVID' and its adoption by researchers has actually not been helpful, and certainly the ongoing acceptance of the very broad definition is having a materially negative effect on the effectiveness of research into post-infection conditions.

Indeed. In fact 'Long Covid' is a typical example of the muddled thinking behind traditional 'diagnosis'.

 

[Peter T]

Hmm. Except that Long COVID is defined in a way that makes it unhelpfully broad; the existence of this term makes a major contribution to the muddle. And, it seems to offer people with ME/CFS-like disease from 2020 onwards a way to avoid the perceived stigma of accepting an ME/CFS diagnosis. The rise of the name Long COVID has effectively siphoned both patients and effective advocates away from the ME/CFS community.

I think I could make a pretty good argument that the name 'Long COVID' and its adoption by researchers has actually not been helpful, and certainly the ongoing acceptance of the very broad definition is having a materially negative effect on the effectiveness of research into post-infection conditions.

To state what ought to be obvious, Long Covid may be a useful conversational heuristic, but as already said its use clinically and in research is unhelpful. It is likely to be very heterogeneous, to subsume very different issues that may require different management strategies. It is likely to be a mixed bag of
- post intensive care syndrome
- damage to potentially lungs, cardio vascular systems, CNS, etc. arising during the acute infection
- short term post viral effects
- Covid triggered ME/CFS

Some of these will potentially relate to the severity of the acute infection, whereas any consequent ME/CFS may be independent of the severity of the triggering infection. We do not know yet how many with the label Long Covid experience multiple different aspects or tend to display single components. We do not know what aspects may display spontaneous improvement, what may respond to targeted intervention or what will continue to be chronic/ongoing as with ME/CFS. Long Covid research by assuming heterogeneity and by largely ignoring the potential ME/CFS component means we have few useful descriptions or conclusions, despite the volume of research undertaken.

What is frustrating is that so many researchers have ignored the lessons that ought to have been learned from decades of poor research into post infectious conditions in general and more specifically ME/CFS and ignored the early warnings from the ME/CFS community.