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

1. Introduction

The COVID-19 pandemic, caused by the novel coronavirus SARS-CoV-2, was first reported in Wuhan, China, in December 2019. Within a few months, it spread globally, leading the WHO to declare a Public Health Emergency of International Concern in January 2020 and a pandemic in March of the same year. The disease, initially referred to by various names, was formally designated “COVID-19” by the WHO in February 2020.

The COVID-19 pandemic, which has caused more than a total of 7.1 million deaths around the world (as of November 2025) [1], not only reshaped global public health but also drew attention to a new form of patient-defined illness. While scientific and clinical efforts initially focused on acute infection and mortality, a growing number of infected individuals continued to experience persistent, disabling symptoms long after their initial infection. For many, the greatest challenge was not simply the virus itself but the struggle to have their symptoms recognized within clinical and social settings.

This chapter examines the emergence of Long COVID as the first illness in history named by patients themselves [2]. It highlights how persistent symptoms became visible through patient narratives, how digital communities facilitated the early understanding of this condition, and how individuals articulated their illness experiences using concepts such as invisible illness and medical gaslighting. By centering on patient voices, this chapter examines how Long COVID reshaped medical knowledge and challenged traditional hierarchies of expertise.

By situating patient narratives alongside evolving clinical and neurological knowledge, this chapter frames Long COVID as a condition that cannot be adequately understood through a single disciplinary lens but instead requires a biopsychosocial approach that bridges medicine, psychology, and the social sciences.

2. Acute COVID-19 and the emergence of persistent illness

Initially, COVID-19 was described as a mild to moderate respiratory illness. While individuals with underlying conditions such as cardiovascular disease, diabetes, respiratory disorders, or cancer were more likely to develop severe illness, most people were expected to recover without the need for special treatment. Common symptoms included fever, cough, fatigue, headache, and diarrhea. Severe symptoms, such as difficulty breathing, chest pain, or loss of speech and mobility, were considered medical emergencies requiring immediate attention [3]. According to a WHO report published in February 2020 [4], pneumonia-like symptoms caused by COVID-19 typically resolved within approximately two weeks in mild cases and within three to six weeks in severe cases, but most people experienced mild symptoms and recovered quickly. In March, the WHO reported that 80% of infected individuals experienced mild or no symptoms, 15% required oxygen therapy, and 5% developed critical symptoms necessitating mechanical ventilation [3].

As the number of daily infections and deaths was anxiously monitored worldwide, COVID-19 swept across the globe, claiming many lives. The overwhelming number of critically ill patients, particularly during the early waves, placed unprecedented pressure on healthcare professionals, and mass burials of COVID-19 victims were circulated globally, creating an impression of the virus as a primary acute and life-threatening respiratory illness.

Over time, however, a further tragedy caused by this virus began to emerge. It became clear that a large number of patients, even those who were fortunate enough to survive the infection or who had mild initial illness, were not recovering after two weeks. Their symptoms persisted, new symptoms beyond acute respiratory pathology were added, and many were unable to return to their original state of health even after several months. Many continued to experience debilitating multi-system involvement that was not explained by acute respiratory pathology alone.

The leadership of New York Governor Andrew Cuomo in managing the explosive outbreak was praised at the time and frequently featured on TV news programs. Among these reports was the story of his brother, Chris Cuomo, a CNN news anchor, who contracted COVID-19 in March [5]. Footage from New York depicted harrowing scenes: bodies stored in refrigerated containers due to a lack of space, and mass graves being dug with heavy machinery. In the midst of this devastation, Chris Cuomo reported daily on his condition from the basement of his home, where he was recovering [6–8]. Chris Cuomo openly shared his own COVID-19 experience, including publicly displaying his chest X-rays and talking about hallucinations of speaking with his deceased father while suffering from a high fever. He emphasized on air that he was saying this because no one else was, that “COVID-19 definitely affects the brain,” noting that his symptoms persisted beyond a month – an observation that challenged the dominant understanding focused exclusively on lung pathology and mortality.

3. Patient narratives and early recognition

As global case numbers rose, reports of symptoms persisting beyond the acute phase of COVID-19 began to surface. Early accounts shared through social media, blogs, and informal support networks described illness trajectories that diverged markedly from prevailing assumptions that COVID-19 resolved within two to six weeks [4]. These narratives consistently documented a wide spectrum of multisystem symptoms, including fatigue, dyspnea, chest pain, myalgias, headaches, dysautonomia, palpitations, gastrointestinal disturbances, anosmia, ageusia, and cognitive impairments commonly referred to as “brain fog,” as well as dermatological manifestations, dizziness, and sleep disturbances [9–13]. Many patients reported relapsing–remitting courses, with symptom exacerbation following physical or cognitive exertion.

These early narratives emerged in parallel with growing clinical uncertainty about post-viral sequelae, particularly regarding neurological, autonomic, and immunological symptoms that were poorly captured by existing diagnostic frameworks. Hanna Lockman experienced recurrent chest pain, repeated emergency department visits, short hospitalizations, and significant cognitive dysfunction [14]. Her subsequent establishment of large online support groups highlighted the scale of unmet clinical needs. Psychiatrist Suzan Weinstain similarly reported persistent palpitations and dyspnea lasting over a month, yet she was informed that her symptoms were anxiety-related and prescribed anxiolytic medication [15]. Such experiences were particularly striking when reported by physicians who became patients themselves, exposing gaps in clinical recognition and response.

Lisa Jensen described a prolonged illness marked by fluctuating respiratory, cardiovascular, neurological, dermatological, and gastrointestinal symptoms, despite receiving minimal clinical evaluation beyond reassurance to remain at home unless critically ill [16]. These individual accounts echoed broader concerns articulated by Lokugamage et al. [17], writing on behalf of an online group of over 500 physicians with COVID-19, who noted a lack of clinical curiosity and systematic attention to emerging symptom patterns.

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.

Taken together, these patient narratives contrasted sharply with early clinical guidelines that framed COVID-19 as a short-lived respiratory illness characterized primarily by fever, cough, and breathlessness. The convergence of similar accounts across diverse individuals highlighted the need to reconsider assumptions about recovery and to attend more closely to emerging post-acute illness trajectories.

4. Patient support groups and digital communities

As clinical authorities initially emphasized rapid recovery from COVID-19, growing numbers of patients – many young and previously healthy – turned to online platforms to share experiences of persistent symptoms and seek information, validation, and support. The absence of clinical recognition not only prolonged physical suffering but also intensified psychological distress, as many patients reported being dismissed or reassured that their symptoms were anxiety-related.

In response to limited formal medical guidance, digital patient communities rapidly emerged as sites of collective sense-making and knowledge production. Beyond providing emotional support, these groups facilitated the aggregation of symptom reports, enabling early pattern recognition across geographically dispersed individuals. Members described a shift from confusion and uncertainty toward more coherent illness narratives, reflecting an emerging international citizen science movement focused on understanding post-acute COVID-19 symptoms [22, 23].

Patient-led surveys conducted in early 2020 provided some of the first systematic descriptions of persistent symptoms. The Body Politic COVID-19 Support Group surveyed 640 individuals in spring 2020, reporting that 91% continued to experience symptoms after an average of 40 days [24]. Frequently reported symptoms included fatigue, pain, headaches, cognitive impairment (“brain fog”), tremors, sweating, and gastrointestinal disturbances. Initially formed as a small Instagram chat, Body Politic expanded to more than 14,000 members and migrated to Slack, where topic-specific channels facilitated focused exchanges and data sharing [14, 24].

Similarly, Diana Berrent founded the Facebook group “Survivor Corps” following her COVID-19 diagnosis [25]. Originally created to promote convalescent plasma donation, the group grew to over 110,000 members and evolved into a patient-led advocacy and research platform. In 2020, members were invited to report all COVID-19-related symptoms using a survey framework informed by early work from Lambert and Chung, with open-ended fields allowing the identification of previously unrecognized symptoms [26]. The resulting data documented widespread multisystem involvement, including neurological, dermatological, ocular, and pain-related symptoms, extending beyond the respiratory and vascular manifestations emphasized in official guidance.

Patient advocacy groups have been instrumental in identifying persistent symptoms and influencing research and clinical attention. These patient-led data collection efforts were among the first large-scale descriptions of the condition that would later be called Long COVID, long before formal epidemiological studies were underway. They filled an urgent informational gap and empowered patients to counter medical dismissal with shared evidence.

The patient-generated datasets preceded formal epidemiological studies and played a critical role in drawing attention to the heterogeneity and persistence of post-COVID symptoms. At the same time, the gap between official information and lived experience contributed to significant emotional distress. Many patients reported feeling abandoned, stigmatized, or treated as hypochondriacs, and accounts of medical gaslighting – such as symptom minimization or psychologization – were common. A review by Akbarialiabad et al. [27] highlighted widespread feelings of stigma, barriers to care, and emotional responses, including anger, anxiety, and hopelessness. These experiences were further articulated in the multilingual video project “Message in a Bottle” by the advocacy group Long Covid SOS [28], which documented patients’ appeals to healthcare professionals and policymakers regarding the lack of recognition and care for persistent, poorly understood symptoms [14, 29, 30].

As patient-generated data accumulated and recurring symptom patterns became increasingly visible, the need for a shared conceptual label to describe this emerging condition became unavoidable. This collective process of sense-making within digital communities directly set the stage for the naming of “Long COVID.”

5. Naming Long COVID

By the spring of 2020, as patient-generated data accumulated across digital platforms and recurring symptom patterns became increasingly visible, it had become clear to patients that their prolonged symptoms were not isolated or idiosyncratic but instead reflected a shared, emerging illness trajectory. Yet no official name had been universally adopted for these symptoms, and they were referred to in the literature by various terms: chronic COVID syndrome, post-COVID-19 syndrome, ongoing symptomatic COVID-19, post-acute COVID-19, prolonged COVID-19 sequelae, or long COVID. Patients themselves were referred to as “long-haulers” [31–33].

Interestingly, the term “Long COVID,” now adopted by prominent medical journals, was not proposed by infectious disease specialists. Rather, it emerged from patients themselves via social media platforms such as Twitter (now “X”) and Facebook – arguably the first time in medical history that a disease name was created by patients [23]. In the early stages of the pandemic, the information on COVID-19 symptoms announced by the WHO failed to resonate with many individuals who were classified as “mild cases” and thus denied medical care. With no guidance or explanation available for their prolonged suffering, social media became the only avenue through which patients could discover others experiencing similar symptoms.

In March 2020, patients began posting about their diverse and complex symptoms on Twitter, sharing their distressing experiences with thousands of others [34]. A shared concern emerged from these exchanges: the lack of recognition by medical professionals. Patients, including physicians, reported being dismissed, belittled, or labeled as neurotic.

By April, newspapers began publishing patient narratives detailing the severity and persistence of symptoms. Chris Cuomo also began reporting his own symptoms on CNN in April [6]. In May, Paul Garner’s letters to the BMJ were published [18], later featured in special issues that reached over a million readers. Many patients printed Garner’s letters to show their doctors, seeking validation. At a time when no peer-reviewed studies on prolonged symptoms existed, even a single case report held immense value.

It was in May that the term “Long-COVID-19” first appeared when Elisa Perego, an Italian researcher, tweeted about her ongoing symptoms after recovering from COVID-19 [31]. This term quickly gained traction through patient interactions, spreading like wildfire across the public, media, and eventually reaching influential figures in academia and healthcare [2]. Also in May, the patient group Survivor Corps released the first online survey documenting over 50 lingering symptoms associated with COVID-19 [24]. Conducted with 1,500 participants, the most frequently reported symptoms were fatigue, muscle pain, and shortness of breath [26]. Patient blogs, YouTube videos, and surveys began attracting widespread attention.

In July, Anthony Fauci, Director of the U.S. National Institute of Allergy and Infectious Diseases, stated that some long-haulers’ symptoms, like brain fog and fatigue, are “highly suggestive” of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [14]. Fauci, a longtime acquaintance of Chris Cuomo, reportedly kept in daily contact during Cuomo’s illness [35], and it is likely that these conversations helped Fauci recognize the issue early on.

By mid-August, peer-reviewed studies on post-COVID symptoms began to appear, and “Long COVID” was increasingly recognized as a legitimate research topic. The journal Nature highlighted the movement, noting that researchers, patient groups, and patients themselves were advocating for the term “Long COVID” to describe persistent symptoms [36]. Nisreen Alwan, a public health professor at the University of Southampton and a Long COVID patient, emphasized that recovery should not be defined solely by a negative virus test but must also consider ongoing symptoms such as breathlessness, muscle pain, palpitations, and fatigue [37]. Nature reported that the WHO was also focusing on this issue, stating that researchers and funding bodies should advance studies centered on patient voices.

Felicity Callard, a professor of human geography at the University of Glasgow and a Long COVID sufferer herself, argued that it was crucial to reach a consensus on the appropriateness of the term “Long COVID” [2]. Despite patient advocacy, some experts considered these symptoms identical or similar to existing conditions such as ME/CFS or post-infectious fatigue syndrome. Patient communities from both conditions had begun to collaborate. Callard, along with Alwan and colleagues, submitted a letter to the BMJ urging healthcare professionals and researchers to adopt the term “Long COVID” [38]. They cautioned against terms such as “post,” “syndrome,” or “chronic,” which imply assumptions about disease progression without sufficient evidence and may hinder access to care. For example, “post” suggests recovery has occurred, though the definition of recovery remains unclear. “Syndrome” implies a specific symptom cluster, and “chronic” assumes long-term persistence, all of which are premature coconditions. In contrast, “long” simply denotes duration without presupposing any pathology, merely describing the fact that the symptoms persist for an extended period [31].

As patient advocacy intensified and emerging studies documented prolonged symptoms, major health organizations began to adopt terminology for the condition. However, recognition was neither immediate nor uniform, and different terms proliferated. In August 2020, WHO Director-General Tedros Adhanom Ghebreyesus met with patient groups and stated, “We have heard loud and clear your SOS to recognize Long COVID and include your voices in guidelines and research” [36]. In October 2020, the NIH updated its COVID-19 treatment guidelines to include the possibility of prolonged symptoms, even in mild cases [39]. The CDC adopted the term “post-acute sequelae of SARS-CoV-2 infection (PASC),” simultaneously acknowledging “Long COVID” in public communications. The CDC also established an ICD-10 code, “post COVID-19 condition,” for classifying diagnosis for this condition [40]. By 2021, the WHO adopted the label “post COVID-19 condition,” defining it as symptoms lasting at least two months and not explained by alternative diagnoses [3].

Even as these institutions used biomedical nomenclature, many retained the patient-coined term “Long COVID” in public-facing materials, recognizing its global resonance and its critical role in advocacy. The coexistence of clinical and patient-derived terms highlights a unique phenomenon: a patient-defined term achieving global institutional status. What was once referred to by various names is now commonly recognized in medical literature as “Long COVID.” As of November 2025, a PubMed search yielded 7736 articles with “Long COVID” in the title.

Yet, the rapid institutionalization of the term did not immediately translate into clinical recognition or validation at the level of everyday medical practice.

The key milestones in the patient-driven naming and subsequent institutional recognition of Long COVID are summarized in the timeline provided in Box 1.

Timeline: Naming and recognition of Long COVID.

Early 2020

• COVID-19 is initially framed as an acute, self-limiting respiratory illness, with expected recovery within weeks.

March 2020

• Patients begin reporting persistent, multisystem symptoms on social media platforms, challenging prevailing assumptions of rapid recovery.

April-May 2020

• Patient narratives gain wider visibility through blogs, news media, and physician-patients (e.g., Paul Garner’s BMJ letters).

• Elisa Perego introduced the term “Long COVID” on Twitter, which was rapidly adopted within patient communities.

Spring-Summer 2020

• Patient-led surveys (e.g., Body Politic; Survivor Corps) document extensive, heterogeneous symptom profiles persisting beyond the acute phase.

• Digital communities emerge as sites of collective symptom recognition and data production.

July 2020

• Anthony Fauci publicly notes similarities between “long-hauler” symptoms and ME/CFS, signaling early biomedical acknowledgment.

Late 2020

• Peer-reviewed studies on post-COVID symptoms increase; international health organizations engage with patient groups.

• The CDC introduces the term PASC, while the patient-coined term “Long COVID” remains widely used.

2021

• The WHO defines post-COVID-19 condition, institutionalizing prolonged symptoms within global health frameworks.

• Major research initiatives and multidisciplinary Long COVID clinics have been launched worldwide.

2025

• “Long COVID” is firmly established in scientific literature, with over 7,700 PubMed-indexed articles using the term, reflecting its global institutional adoption.

6. Medical gaslighting in the context of Long COVID

Despite this growing institutional visibility, as hospitals struggled to manage the surge of severe COVID-19 cases, individuals with mild or moderate infections were instructed to recuperate at home. This strategy, though necessary from a public health perspective, had an important unintended consequence: clinicians lacked opportunities to observe the full course of illness in non-hospitalized patients. Persistent symptoms were therefore not anticipated, and many physicians assumed that recovery would follow the expected two – to six-week trajectory. When patients later sought help for debilitating symptoms, they often found that their concerns were not believed.

Because laboratory tests and imaging frequently showed no abnormalities, many clinicians concluded that patients’ complaints were exaggerated, psychological, or unrelated to COVID-19. In this context, patients frequently reported feeling dismissed, stigmatized, or trivialized. Their experiences were reframed as anxiety, somatization, or stress, despite the severity of their physical symptoms. Many came to describe these encounters as “medical gaslighting” [41, 42].

The concept of medical gaslighting was already circulating in the broader social landscape. The term “gaslighting” had appeared in widely viewed YouTube videos, patient guidebooks [43], and early media reporting on Long COVID. Survivor Corps, a large online support group in the U.S., even used the phrase “to avoid gaslighting” in its informational materials for individuals experiencing persistent symptoms [44]. The term “medical gaslighting” appeared in JAMA, quoting Hanna Lockman’s experience as a long hauler [14]. Because the term was already familiar to the public, it offered patients a conceptual framework for interpreting their experiences and articulating the systemic problems they faced within the healthcare system [45].

By using the term “gaslighting,” patients not only inverted the traditional power dynamic of the clinical encounter but also accused physicians of committing a form of harm – delegitimizing suffering by insisting that subjective reports were unreliable unless confirmed by objective indicators such as blood tests. By recognizing gaslighting, patients reframed their encounters as systemic rather than personal failures, which helped restore confidence and fostered collective advocacy. In this sense, the act of naming became a political statement. As Au et al. [46] argue, patients required the term “medical gaslighting” to explain and make sense of repeated dismissal, delayed diagnosis, and deferred treatment.

Many Long COVID patients, like those with other invisible illnesses, have learned to navigate biomedical discourse with remarkable sophistication. As is often the case for individuals with intractable chronic conditions, patients have educated themselves about relevant physiology, immunology, and autonomic dysfunction. Some became as well-versed as clinicians – not only in biomedical science but also in the social sciences, where they have found tools for analyzing power, authority, and epistemic injustice [46].

Long COVID also fits within the broader category of invisible or medically unexplained illnesses – conditions characterized by debilitating symptoms that lack clear biomedical markers [47–50]. Within the dominant biomedical paradigm, illness is assumed to have observable pathology [51], and physicians are trained to privilege objective findings [52]. When symptoms elude these frameworks, they are often reinterpreted as psychological. This creates strained patient-clinician relationships marked by mutual frustration, doubt, and emotional distress [53]. Because psychological illness is perceived as implying personal responsibility [54], invisibility often leads to stigma. Patients’ accounts of suffering – sometimes the only evidence available – are dismissed as exaggeration, fabrication, or “all in their head” [55, 56]. These experiences can produce humiliation, self-doubt, and profound social isolation.

For many individuals with Long COVID, this dynamic was painfully familiar. The pattern of dismissal bore a striking resemblance to the decades-long struggles of patients with ME/CFS, fibromyalgia, and other contested chronic illnesses [12, 14, 57–61]. Although ME/CFS affects a substantial number of people, the absence of definitive diagnostic tests or curative treatments has historically rendered the condition vulnerable to skepticism and underfunding. The emergence of Long COVID reignited debates about how medicine handles invisible illnesses and raised the pressing question of how to avoid repeating the same mistakes [36].

Collectively, Long COVID patients transformed their shared experiences of dismissal into a powerful form of activism. Through digital communities and large-scale patient-led surveys, they documented symptom patterns that had been overlooked by clinicians and brought to public attention numerous manifestations of the illness that experts had not yet recognized. Their collective voice demanded accountability, urging healthcare professionals to take persistent symptoms seriously and calling for improvements in clinical care and public policy [22].

The activism surrounding medical gaslighting demonstrates a critical lesson: when patients recognize and name the structural forces that invalidate their suffering, they can mobilize against them. Long COVID patients not only described gaslighting – they challenged it.

Crucially, this challenge did not remain confined to individual clinical encounters but began to reshape research agendas, institutional practices, and the inclusion of patient voices within formal medical decision-making.

For clarity, the key concepts used in this chapter – including medical gaslighting, invisible illness, and epistemic injustice – are briefly defined in Box 2.

Key concepts.

Medical gaslighting

A form of clinical invalidation in which patients’ reports of symptoms are dismissed, minimized, or reframed as psychological despite clear functional impairment. In the context of Long COVID, such encounters undermine trust in healthcare, delay diagnosis and care, and contribute to significant psychological distress.

Invisible illness

A category of illness characterized by debilitating symptoms – such as fatigue, cognitive impairment, and autonomic dysfunction – that lack visible signs or consistent abnormalities on standard diagnostic tests. Long COVID exemplifies how conditions without clear biomarkers remain difficult to recognize within traditional biomedical frameworks.

Epistemic injustice

A concept from social epistemology referring to the systematic devaluation of individuals as knowers, particularly when their testimony is discounted due to structural power imbalances. In Long COVID, epistemic injustice occurs when patients’ lived experiences are marginalized in favor of biomedical authority, despite ongoing scientific uncertainty and the absence of definitive biomarkers.

7. Patient voices in treatment and research

In response, the widespread recognition of medical gaslighting among Long COVID patients did more than highlight individual encounters of disbelief: it revealed a structural failure within contemporary healthcare systems. As patient narratives accumulated across digital platforms, news media, and patient-led surveys, pressure mounted on public health agencies and medical institutions to respond to what was increasingly understood as a persistent, multisystem condition. Institutional acknowledgment of Long COVID emerged gradually and unevenly, shaped by patient activism, clinical uncertainty, and the limitations of biomedical paradigms accustomed to acute, test-verifiable diseases.

For much of 2020, public health messaging worldwide continued to emphasize that COVID-19 was an acute respiratory illness, with recovery expected within several weeks. Symptoms that persisted beyond this period were typically characterized as “post-viral,” “residual,” or psychological in origin. Many health authorities hesitated to acknowledge the possibility of a chronic post-COVID condition, and early guidelines focused almost exclusively on acute management. This delay in acknowledgment meant that patients were often left without clinical guidance, care pathways, or rehabilitation resources. The resulting gap between official public health narratives and patient experiences further eroded trust and intensified the sense of abandonment already described in accounts of medical gaslighting.

In response to this situation, a group of Long COVID patients – especially patients who were physicians, scientists, and researchers – stood up to take action. An unprecedented number of healthcare workers became infected during this pandemic and experienced firsthand the frustration of being dismissed or denied care. A Facebook group exclusively for physicians with Long COVID grew to 500 members [15]. Alwan et al. [62], along with 38 co-authors, submitted a paper titled “From Doctors as Patients: A Manifesto for tackling Persisting Symptoms of COVID-19” to the BMJ, advocating for the need to oversee proper treatment and research for Long COVID. They emphasized the need for bias-free scientific methodology, recognition of the burden of persistent symptoms beyond mortality, inclusion of home-treated patients in research, avoiding denial of care based on negative antibody tests, and incorporating patient voices into healthcare and research design.

Furthermore, Gorna et al. [63], representing a collective of patient-experts, commented on the UK Long COVID clinical guidelines [64], stating that the listed symptoms are insufficient and do not reflect the reality of Long COVID, lacked reference to suspected causes such as viral persistence, immune dysregulation, and autoimmunity, and leaned toward psychological framing. The basis for labeling symptoms as “post-COVID-19” and stating that “most people recover within 12 weeks” is not provided, and this phrasing is inappropriate as it presupposes recovery from COVID-19 at some point. They urged ongoing revisions aligned with WHO guidance, incorporating patient perspectives and expertise.

The advocacy group LongCovidSOS [28] conducted the “Recognition Research Rehab” campaign to urge government officials, employers, and the general public to understand patient needs and ensure non-discriminatory treatment, undertaking the following activities: sending an open letter (signed by over 1,000 patients) to national health officials, including Prime Minister Boris Johnson; distributing the previously mentioned “Message in a Bottle”; delivering this video individually from patients to 10 Downing Street (the Prime Minister’s residence); and more. They demanded the establishment of: a working group for Long COVID patients; immediate research infrastructure for this condition; proper training for healthcare providers; clinics equipped for testing, diagnosis, and treatment; employer awareness and income protection during medical leave; and more. Physician-patient group member Lokugamage et al. [17] welcomed the NHS’s creation of a portal also accessible for home-treated patients but stressed the importance of co-designing services through two-way dialog to avoid blind spots from top-down approaches. Patient-led surveys, such as those from the Slack Body Politic group [24], have yielded valuable data that could inform rehabilitation strategies.

Long COVID symptoms span multiple systems, requiring a multidisciplinary approach to understand their physiological, cognitive, psychological, social, and occupational domains. Patients may need services from respiratory, cardiovascular, and rehabilitation departments, alongside physical therapy, speech therapy, and psychological therapy for cognitive domains [65]. While psychological aspects should be addressed in research, they must not overshadow the need for thorough physiological evaluation [13]. Frellick [66] suggested that remote monitoring could help capture fluctuating symptoms that might be missed during clinical visits.

It was estimated that approximately one-third of patients who contract COVID-19 will develop Long COVID, meaning millions of patients in the U.S. alone will suffer from these symptoms for an extended period [67]. Taking the situation seriously, the NIH announced in February 2021 that it would prepare an unprecedented budget of $1.15 billion to elucidate the pathogenesis of Long COVID and develop prevention and treatment strategies [68]. By early 2021, dedicated Long COVID clinics adopting the multidisciplinary model began to emerge across the U.S., Europe, and parts of Asia. Clinical pathways began to include strategies for managing autonomic dysfunction and cognitive impairment. They also addressed chronic fatigue, post-exertional malaise, and cardiovascular abnormalities. Access, however, was far from even. Many patients reported long waiting lists, geographic barriers, or limited insurance coverage. The establishment of clinics demonstrated institutional recognition, but it did not eliminate the disparities in care or the lingering skepticism many patients continued to encounter [40, 46].

At the same time, research initiatives were launched worldwide. National health agencies in the U.K., the U.S., and other countries funded large-scale cohort studies to examine the prevalence, symptomatology, and risk factors of Long COVID [68]. Early studies confirmed what patients had already been experiencing: persistent symptoms were common across age groups, even in those with mild initial illness. Subsequent investigations explored immunology, neurology, cardiology, autonomic physiology, and post-viral pathology. Proposed mechanisms included immune dysregulation and autoimmunity, viral persistence, microvascular and endothelial injury, autonomic nervous dysfunction, mitochondrial impairment, and neuroinflammation [69–77]. While no single pathway explains the full range of symptoms, these studies definitively challenged earlier claims that persistent symptoms were primarily psychological.

Patient groups were increasingly included in advisory roles, shaping study design and research priorities [78]. This shift marked a break from traditional medical hierarchies and highlighted the power of patient advocacy in shaping science [33].

Despite progress, recognition remains incomplete. The absence of definitive diagnostic tests complicates assessment, and some clinicians continue to doubt symptoms that lack visible markers, leaving patients feeling dismissed or trivialized [46, 79]. The institutional response to Long COVID has illuminated longstanding tensions in medicine concerning whose knowledge is valued and how illness is defined. These tensions extend beyond clinical settings, shaping broader social meanings of illness, legitimacy, and responsibility.

Box 3 presents a conceptual framework illustrating the dynamic interactions among patient advocacy, biomedical research, and institutional responses in the recognition of Long COVID.

Conceptual framework: Recognition of Long COVID.

Patient advocacy

• Coined the term “Long COVID” and documented persistent symptoms through digital communities.

• Elevated experiential knowledge, challenging clinical dismissal, and medical gaslighting.

• Generated collective pressure for recognition of an invisible illness.

Biomedical research

• Investigated underlying mechanisms, including immune dysregulation, autonomic dysfunction, and neurocognitive impairment.

• Provided clinical legitimacy through cohort studies, biomarker research, and evolving guidelines.

• Often lagged behind patient testimony, revealing epistemic tensions between lived experience and biomedical validation.

Institutional response

• Adopted both biomedical labels (e.g., PASC, post-COVID condition) and patient-defined terminology.

• Established multidisciplinary clinics, research programs, and ICD classifications.

• Balanced growing recognition with persistent skepticism and uneven access to care.

Central dynamic

• Long COVID illustrates a dynamic interaction among patient voices, scientific inquiry, and institutional authority.

• Recognition emerged not linearly but through negotiation, tension, and feedback between domains.

• The case exposes the limits of traditional diagnostic paradigms and underscores the need for flexible, patient-centered models of care.

8. Social and cultural implications

Taken together, the biological, psychological, and social processes discussed in this chapter underscore that Long COVID’s impact extends well beyond clinical and biomedical definitions. It challenges ideas of what counts as “real” illness, exposes healthcare inequalities, and shows how social expectations shape suffering. With symptoms that fluctuate, affect multiple systems, and often remain unseen, Long COVID brings into focus long-standing struggles faced by people with chronic conditions.

Recovery was rarely straightforward. Patients described cycles of improvement and relapse, echoing patterns seen in other post-viral illnesses. These unpredictable courses disrupted the cultural narrative that illness is short-lived and resolvable. Media coverage was mixed: some stories evoked sympathy, while others reinforced stereotypes of weakness or hysteria [80–84].

Despite receiving attention, Long COVID often remained invisible. Many patients appeared outwardly healthy, fueling doubt and stigma. The widespread belief that COVID-19 clears up in two weeks left patients constantly having to prove their limitations – to employers, colleagues, and even family. Stigma was further compounded by cultural values that link productivity to moral worth, leaving many with feelings of guilt or shame [85, 86].

The socioeconomic consequences were profound. Patients reduced or left employment due to fatigue, cognitive impairment, or autonomic dysfunction, while disability systems often failed to accommodate fluctuating symptoms. Advocacy groups played a vital role in documenting experiences and influencing research, showing that patient-led knowledge can precede institutional recognition [46, 87]. Recognition and care remain uneven globally, especially in marginalized communities [88].

While the naming and recognition of Long COVID highlight the socio-historical power of patient advocacy, the condition also exemplifies the biopsychosocial model of illness. Emerging evidence suggests that biological processes – such as immune dysregulation, neurocognitive impairment, and autonomic dysfunction – are closely intertwined with psychological and social factors, including stigma, identity disruption, and structural inequities in healthcare and workplace exclusion. Even when neurobiological changes are detectable through imaging, effective treatment is thought to require psychological intervention and attention to the patient’s lived experiences [89, 90].

Long COVID reveals how biological mechanisms, psychological impacts, and social inequities converge, reminding us that effective recognition and care must integrate rigorous science with the lived testimony of patients.

To highlight the interconnected biological, psychological, and social dimensions of Long COVID, Figure 1 provides a schematic representation of the biopsychosocial model as applied to this condition.

9. Conclusion

The emergence of Long COVID marks a defining moment in the history of medicine, not only because of its biomedical complexity but also because of the unprecedented role patients played in identifying, naming, and legitimizing the condition. What began as invisible symptoms, dismissed or psychologized in clinical encounters, evolved into a global movement of advocacy, research, and collective knowledge production. Through digital communities and patient-led initiatives, individuals transformed personal suffering into shared evidence, fundamentally reshaping how persistent illness is recognized and understood.

This chapter has shown that Long COVID cannot be adequately explained through a single disciplinary lens. Rather, it exemplifies the convergence of biological mechanisms, psychological impacts, and social structures, highlighting the limitations of narrowly biomedical models of disease. While institutional recognition and scientific research have advanced rapidly, persistent challenges – including diagnostic uncertainty, stigma, and unequal access to care – remain. The Long COVID experience underscores the necessity of integrating rigorous biomedical inquiry with careful attention to patient narratives and lived experiences.

As the first illness in history named by patients themselves, Long COVID challenges long-standing hierarchies of medical authority and knowledge production. Its legacy extends beyond COVID-19, offering critical lessons for the understanding and management of other chronic and contested conditions. Ultimately, the future of Long COVID – and of chronic illness care more broadly – will be shaped not only by scientific breakthroughs but by the willingness of medical institutions and societies to listen to, learn from, and collaborate with those living with complex, often invisible illnesses.