“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.

 

[Snow Leopard]

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

LongCOVID wasn't supposed to be a diagnosis, it was supposed to be an umbrella term, while more specific diagnoses were supposed to be discovered, rather than "PASC" etc.

 

[Yann04]

LongCOVID wasn't supposed to be a diagnosis, it was supposed to be an umbrella term, while more specific diagnoses were supposed to be discovered, rather than "PASC" etc.

I sort of like “Post-COVID Conditions” (PCC). I think it’s more effective at getting that across though it’s a bit of a mouthful,

Yet pwLC here in Switzerland often say they have a “Post-COVID” which works just as well as a “Long COVID”. (And has the extra bonus of not subtly implying viral persistence, as “long” COVID might suggest the person still has the COVID virus.)

 

[Jonathan Edwards]

LongCOVID wasn't supposed to be a diagnosis,

Maybe tell that to Mr Shiozaki.

 

[Mij]

Myalgic encephalomyelitis doesn't describe my illness. I was fine with PVFS/CFS when I was diagnosed. It's my own personal experience though, and it was understood that I was recovering from a viral infection during that time period.

 

[rvallee]

Ultimately, Long COVID exposes the limits of traditional diagnostic paradigms and underscores the need for interdisciplinary

No, it doesn't. The institutions of medicine failed and they need to own this failure and reform, or rather they have to be made to do that, because they will never do it voluntarily. There was nothing stopping them from being a force for good here, and there still isn't, but instead they chose to deny everything and do nothing about it.

It's fully baked into the reality of how medicine constituted itself over the last century or so and how it actually works that there are hard problems, and this is just a very hard one. They've had everything they need to work on this competently for decades, and they instead chose to cover it up, lie about it and then cover that up, too.

All of this is reinforced by the fact that despite all the past tense used in the paper, all the tenses apply here, including future tense. As a choice. They want biopsychosocial, they got biopsychosocial, this is what biopsychosocial does. It fails, systematically. As a choice.

LongCOVID wasn't supposed to be a diagnosis, it was supposed to be an umbrella term, while more specific diagnoses were supposed to be discovered, rather than "PASC" etc.

Always was. The idea was always that medicine would take it from there and do competent, expert work. That they refused and failed to do so doesn't change the fact. That they can't even do half as well in 6 years as a community of amateurs with no resources did in a year is only an indictment on the profession, not the concept.

All of this was known. The profession chose to fight it. They're still fighting it. It doesn't expose flaws in how medicine works, it exposes failure in people, in institutions, in accountability, where they choose to make decisions in ways that can't work, and refuse to do work in ways that do.

Imagine seeing this:

A particularly influential narrative was provided by Paul Garner, Professor at the Liverpool School of Tropical Medicine, through a series of letters published in the BMJ [18–21]. Garner described prolonged, cyclical waves of exhaustion, neurological symptoms, dysautonomia, gastrointestinal disturbances, emotional lability, and cognitive impairment extending well beyond the expected recovery period. His account, widely disseminated in both medical and mainstream media [22], played a pivotal role in legitimizing patient reports of persistent symptoms and drawing attention to a growing population whose illness course fell outside existing clinical frameworks.

With zero awareness that he has completely turned since and has been a toxic force for the denial and gaslighting side. It also played no such role, though that was the hope and why his advocacy was highlighted by the community.

There are good bits in the text, but somehow it manages to present the biopsychosocial model, literally the failure, as a good thing. Good grief.

There's also the deep irony that despite LC being (more likely one of) the first illness to be named by patients, most professionals refuse to use or recognize it, often prefer alternative terms that explicitly hide the shame of the profession's failure.