Long COVID: between a syndromic framework and an etiological imperative

  Author : Solenn TANGUY, for Winslow Santé Publique

Six years after the start of the COVID-19 pandemic, long COVID remains one of the major blind spots in the public health response, and we, as a patient advocacy group, have long lamented the limited, or even counterproductive role of the humanities and social sciences in addressing the pandemic: by focusing excessively on the authoritarian aspects and socially destructive effects of preventive measures, while neglecting the long-term medical consequences of the infection, humanities and social sciences have often seemed to echo COVID-skeptical interpretations, without daring to follow them through to their logical conclusion. In this context, the focus on long COVID by science historian Ilana Löwy, who offers an analysis of the social experiences associated with long COVID, is welcome [articleILowy].

However, while we share some of the concerns raised in this article – particularly the need to combat stigma and medical mistreatment of patients – we diverge with several points that we consider major. Indeed, the article departs from the dominant portrayal of the pandemic as a fleeting public health crisis by considering its long-term effects on previously healthy individuals. However, this effort to break away from the mainstream image of COVID-19 seems to us, unfortunately, to be incomplete.

The definition of Long Covid underpinning Ilana Löwy’s article stems from prior media and institutional representations that it does not question, and which we believe contradict three essential points: an etiologically informed definition of Long Covid, a health policy that reacts on a day-to-day basis to the pandemic, and, more broadly, an interdisciplinary curiosity regarding scientific knowledge on the delayed effects of the virus.

Our aim is to shed light on these discrepancies and to highlight some of the key challenges faced by patients with long COVID.

Syndromic and Etiological Approaches

A first point concerns how the relationship between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome is viewed: According to the author, “some researchers believe that a significant proportion of patients with long COVID suffer from myalgic encephalomyelitis/chronic fatigue syndrome, while others argue that the two conditions are virtually identical.”

The struggles waged by affected individuals to raise awareness of the severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are, of course, very important. However, solidarity gains nothing from confusion. To present Long Covid as similar to ME/CFS is, first and foremost, to conflate two distinct modes of defining diseases. Myalgic encephalomyelitis/chronic fatigue syndrome is a neurological disorder diagnosed based on a syndromic approach: a cluster of symptoms – including chronic fatigue and post-exertional malaise – that may have multiple causes (infectious or otherwise). Long COVID, on the other hand, is based on an etiological definition: it refers to all the chronic consequences of infection with an identified pathogen, SARS-CoV-2. These two frameworks and terms are not interchangeable. Defining a disease by a syndrome does not have the same practical implications as defining it by a specific infectious cause with certain pathogenic effects. The syndromic approach is more focused on the day-to-day, personal management of patients’ symptoms. The etiological approach considers clinical cases without separating them from the public health issues associated with pathogen circulation, and necessitates both individual and collective management of the risks of complications and affected organ deterioration.

From the earliest months of the pandemic, patient communities have played a crucial role in documenting the manifestations of long COVID and in establishing it as a multisystemic disease affecting multiple organs and physiological systems [2]. This characterization is not merely descriptive: it is the result of a collective effort to generate knowledge led by the patients themselves. As Elisa Perego has shown, this process has led to the recognition of long COVID as a distinct clinical entity involving specific cardiovascular, neurological, immune, or metabolic complications [3]. Since then, research has consistently confirmed this. In fact, patients most often present with a combination of various overlapping symptoms of long COVID: kidney involvement, cardiorespiratory problems, and post-exertional malaise, for example. Separating them in this way would not make sense for these cases, since the underlying cause is the same and the associated symptoms and treatments overlap. This is all the more important given that certain diseases or symptoms triggered by the infection, such as post-COVID diabetes [4, 5] (though this also applies to many other pathological manifestations such as Postural Orthostatic Tachycardia Syndrome [POTS], chronic myocarditis [6], and Antiphospholipid Syndrome, among others), exhibit marked pathophysiological differences compared to forms not associated with SARS-CoV-2 and require specific therapeutic strategies.

Treating long COVID as a pre-existing syndrome resulting from various causes therefore amounts to disregarding this etiological and multisystemic dimension. This confuses two entirely different ways of categorizing patients, hinders the adoption of biomarkers and specific therapeutic strategies for preventing complications (such as those related to the thrombo-inflammatory aspect, for example), and excludes a majority of Long Covid patients from their own condition; furthermore, this aligns neither with the initial definition of the disease nor with the knowledge accumulated since.

A pandemic that has not ended

We also diverge regarding the temporality of long COVID. Ilana Löwy’s article presents this condition as a residual consequence of a pandemic that is now over. Yet, people with long COVID continue to wage a dual struggle: for the emergence of research commensurate with the delayed effects of the infection, and against an epidemic that has never truly ended. Les malades continuent de vivre dans un contexte de circulation persistante du SARS-CoV-2 et sont, comme tout le monde, soumis à des réinfections. However, a body of converging research shows that reinfection can lead to new cases of long COVID or worsen existing conditions [7]. The cumulative, and more or less silent damage caused by repeated SARS-CoV-2 infections constitutes a public health issue, echoed by various European learned societies, particularly those specializing in cardiology [8, 9] and neurology [10] : Today’s children are growing up with repeated SARS-CoV-2 infections, which carry risks (cardiovascular, renal, etc.), even at a very young age, as shown by the RECOVER study, recently published in The Lancet [11].

The history of long COVID cannot, therefore, be separated from that of the virus’s spread. The movement surrounding long COVID is precisely about rejecting the gradual trivialization of the infection and the downplaying of its long-term effects. Separating long COVID from the current dynamics of the pandemic thus amounts to obscuring a central aspect of the diverse movements and expressions of solidarity that have emerged among patients from very different backgrounds. It also contributes to hiding prevention challenges, as well as the accumulated knowledge about the link between long COVID and the pathogen that causes it.

Scientific knowledge: diversity of organ involvement, patient profiles, and Public Health challenges

The idea that long COVID is primarily an “invisible illness”, one without objectively measurable biological signs, gives us pause. Media reports often focus on a specific patient profile: that of a young, previously healthy individual whose life has been brutally upended by the infection. The adoption of this ‘image d’Épinal’ (a simplistic, idealized image) has deleterious consequences. It ignores and excludes a large portion of patients from the debate: first, those with objectively confirmed clinical or organic signs (cardiac, pulmonary, renal, vascular, or inflammatory abnormalities); and also those whose signs are poorly detected, insufficiently investigated, or interpreted through the lens of other diagnoses.
Epidemiological studies also show that people who already have chronic conditions are at higher risk of developing long COVID and of experiencing severe consequences from it [12, 13]. Thus, this passage on disease definition: « …some of which include « medically visible » pathological manifestations, that is, detectable through objective tests, such as pulmonary insufficiency or cardiovascular problems […] observed more frequently in individuals hospitalized for severe COVID-19, or in people with fragile health”» which is then contrasted with « “classic” cases of long COVID », reminds us of the harmful dichotomy between the “vulnerable” on one side, and the presumed invulnerability of the majority of people on the other. Vulnerability isn’t binary (you’re either vulnerable or you’re not), it’s a continuum (you’re more or less vulnerable), along which we seek to build solidarity. The focus on previously healthy patients renders invisible a significant portion of those affected: people already living with chronic conditions, as well as precarious or disadvantaged populations. Those who, unseen, die from severe organ complications related to their long COVID; it’s worth noting that in 2023 in the United States, the CDC (Centers of Disease Control and Prevention) recorded  5,000 deaths attributed to long COVID, which, according to these health authorities, was likely a significant underestimate. This also overlooks those who, lacking access to scientific information or dedicated support networks, remain unaware that their health issues may be linked to long COVID, even though epidemiological data clearly document these consequences. We therefore regret that the article contributes to the overexposure of a typical patient profile, which narrows the scope of the broader definitions of Long Covid co-developed by patients and experts. We also observe this phenomenon in media coverage of Long Covid deaths, which receive far less media attention when they are “natural” than when they result from suicide.

If these patient profiles remain marginalized, it is due both to the normalization of the illness and to structural ableism: the additional suffering of individuals who are already ill or disabled is considered less significant or less worthy of attention, whether from a medical or public perspective. This focus produces a paradoxical effect: it contributes to rendering invisible those who are most vulnerable and most at risk of severe complications. It also highlights the profound impact of pre-existing medical inequalities on chronic diseases in general. This dynamic means that the most precarious categories and those who were already the sickest likely suffer from Long Covid that is more ‘clinically visible,’ yet they are less informed and less likely to be diagnosed. Consequently, diagnoses rely essentially on patients’ persistence and personal knowledge, which means that only patients who fit the media stereotype will be seen in specialized clinics. Others do exist, but they will be directed toward other diagnoses or left in diagnostic limbo. In reality, biomedical research accumulated over several years unequivocally shows that Long Covid can be accompanied by multiple biological abnormalities: immune, cardiovascular, renal, metabolic, and others. In this context, the patients’ demand for biomedical objectification does not constitute submission to a “tyranny of diagnosis”; on the contrary, it represents a justified claim for access to care, management of complication risks, and potential treatments. Without diagnosis and biomarkers, there can be no appropriate monitoring, no prevention of complications, and no development of treatments.

If the most glaring organ-related dimensions of Long Covid are rendered invisible, it is also, in our view, because its public representation is indexed to the experiences of the most privileged social categories, which benefit from higher initial health capital and are also the most active on social media and within patient associations. If the disease is invisible, it is also because it is new, and the abnormalities associated with Long Covid may require medical tests that are not yet validated or widely deployed. Research showing that SARS-CoV-2 reinfection may lead to an increased risk of long COVID and its associated complications suggests that this disease should be treated as a public health issue that reveals the consequences of prolonged viral circulation; furthermore, the burden of the long-term effects of COVID-19 is likely not yet fully grasped. Long Covid patients in 2020 were the canaries in the coal mine of public health; those in 2026 still are.

Conclusion

Fighting stigma and medical mistreatment of people with Long Covid is, undoubtly, a matter of urgency. But this struggle must be pursued in parallel with a rigorous consideration of scientific evidence and the epidemiological challenges associated with SARS-CoV-2 infection. Rather than opposing the social recognition of suffering to medical investigation, we must articulate them. Patients do not refuse the objectification of their disease, they are deprived of it (due to inappropriate imaging and tests, lack of physician training, etc.). The validation of biomarkers, an understanding of pathophysiological mechanisms, a closer link between clinical and basic research, and the development of prevention strategies are and remain essential; the recognition of long COVID should neither require us to follow the precedent set by other diseases nor lead us to abandon the goal of a medicine that seeks to explain and advance. On the contrary, it should underscore their urgency.

As a patient advocacy group, our primary request is that our experiences as “canaries in the coal mine” benefit others and spare our children from suffering these chronic health effects. We also want the medical community to develop new, reliable diagnostic tools, prevent complications associated with SARS-CoV-2 infection, and finally provide appropriate care tailored to the various manifestations of this condition. Failing to account for the specificities of Long Covid, assigning patients to a predefined category, and overlooking their urgent need for prevention is also a failure to prepare effectively for future crises. For this reason, and in the context of the pandemic, the humanities and social sciences would benefit from moving beyond the classic disciplinary stance that sets itself up in opposition to the ‘tyranny of medical objectification,’ portrayed as reducing suffering voices to silence. Research conducted in recent years on pesticides, for example, demonstrates on the contrary the value for sociology of analyzing logics that obscure epidemiological causality, as well as the processes by which the risks of exposure to hazardous products are euphemized. In our view, nothing should prevent us from applying the same approach to pandemic risks.

Copyright and Publication Reference

This article was originally published in médecine/sciences. © médecine/sciences. All rights reserved.

The original publication is available on the publisher’s website: https://www.medecinesciences.org/fr/articles/medsci/abs/2026/06/medsci20260054/medsci20260054.html