Why we need to keep using the patient made term “Long Covid”

“Long Covid” was first used by Elisa Perego as a Twitter hashtag in May to describe her own experience of a multiphasic, cyclical condition that differed in time course and symptomatology from the bi-phasic pathway discussed in early scientific papers, which focused on hospitalized patients. Just three months later, following intense advocacy by patients across the world, this patient made term has been taken up by powerful actors, including the World Health Organization. Politicians have used it too: Matt Hancock, UK health secretary, recently explained to a parliamentary committee that “the impact of long covid can be really debilitating for a long period of time.”

“Long Covid” has clearly struck a chord. However, it’s not the only term being used to describe persistent symptoms: we’ve also seen post-acute covid-19, postcovid syndrome, and chronic covid-19. As patients and professionals, we see “Long Covid” as better able to navigate the socio-political, as well as clinical and public health challenges, posed by the pandemic in the coming months, for a number of reasons:

1 Long Covid acknowledges that cause and disease course are as yet unknown 

Long Covid emphasizes that the cause of long-term symptoms and the point at which the acute phase of covid-19 ends remain unknown. Its strength is in its non-specificity. It reflects humility by acknowledging uncertainty. Long Covid may well include several conditions that have more than one aetiology, even in one patient. It’s too early to assume that after 2–3 weeks, all patients are “post-viral.” Potential for viral persistence requires research.

2 Long Covid makes clear that “mild” covid-19 is not necessarily mild

Long Covid challenges the early division of covid-19 into mild, severe, and critical, which derived from data from China. Covid-19 was initially assumed to be a respiratory disease and classifications were largely built around pneumonia severity. There now appear to be several disease trajectories. Mild manifestations in the early stage can progress—often significantly later—to severe disease and/or sequelae. Long Covid insists that many so-called “mild” cases are not mild. It also abandons the division between hospitalized and non-hospitalized that continues to demarcate disease severity.  

3  Long Covid avoids “chronic,” “post” and “syndrome”

“Long Covid” emphasizes the only thing about which we’re currently certain: covid-19 symptoms may last a long time, even if we don’t understand duration. Crucially, Long Covid side-steps “post,” “chronic,” and “syndrome.” These can end up delegitimizing people’s suffering, making it harder to access care—especially when a syndrome or chronicity becomes associated with women and/or minoritized people. Medical anthropologists have shown how it is often structural factors, rather than physiological mechanisms, that produce and maintain illness “chronicity.” We believe that to use “chronic,” “syndrome,” and “post” at present, when so little is known about cause(s) and mechanisms of Long Covid, risks leaving those with Long Covid behind, especially if and when an effective vaccine is distributed. 

4 Long Covid draws attention to morbidity 

Long Covid helps shift attention towards morbidity as well as mortality, and allows it to be quantified. Already, hundreds of thousands globally have failed to return to baseline health—though we know little about prevalence and who is more likely to be affected. One author (Alwan) initiated the campaign to “Count Long Covid,” to remedy this and to strengthen prevention efforts through routinely collecting this morbidity measure as a metric informing pandemic response. Knowing that one might, following SARS-CoV-2 infection, develop Long Covid (a term likely harder to ignore or dismiss than, say, “Post-Covid Syndrome”) may affect how people and governments assess risk.

5 Long Covid centres disabled people 

The patient made term “Long Covid” is explicitly disability-inclusive. Many who made Long Covid—including some of us here—have experienced disability and discriminatory treatment in accessing care. We also seek to draw attention to how children and young people with no known pre-existing illness or prior disability can experience persistent symptoms. Long Covid refuses common pandemic assumptions about the unequal value of, and risks attached to, people with and without so-called “underlying health conditions.” 

Clinicians, public health practitioners, policy makers, and members of the public need a simple and powerful term that will keep front and centre the existence and seriousness of long-term symptoms, and the urgency required to measure and address them. That term, we argue, needs to acknowledge aetiological uncertainty without risking the diminishment or disregarding of people’s symptoms. Long Covid, a term from the patient grassroots that has become widely known and used in a very short space of time, fulfils those criteria. Long Covid has the best chance of keeping everyone focused on doing everything possible—socio-politically as well as clinically—to ensure that the long does not become the truly “chronic.” 

Elisa Perego is Honorary Research Associate at University College London. Her current research focuses on health and disability in present and past societies. @elisaperego78

Felicity Callard is a Professor of Human Geography at the University of Glasgow whose research focuses on health, patient/service user experiences, and medical humanities. @felicitycallard 

Laurie Stras is Research Professor of Music at the University of Huddersfield, and Professor Emerita of Music at the University of Southampton. @LaurieStras 

Barbara Melville-Jóhannesson runs a linguistics and artificial intelligence project, funded by Creative Informatics at the University of Edinburgh. @keyeri

Rachel Pope is Senior Lecturer in European Prehistory at the University of Liverpool, her research focuses on archaeological data analysis. @preshitorian

Nisreen A Alwan is an Associate Professor in Public Health at the University of Southampton and an Honorary Consultant of Public Health at University Hospital Southampton NHS Foundation Trust. @Dr2NisreenAlwan 

#LongCovid #CountLongCovid

Competing interests: All authors have experienced prolonged covid-19 symptoms, and have participated in various kinds of Long Covid advocacy.