CHAPTER 22

Long COVID Perspectives

Elisa Perego

Introduction

The COVID-19 pandemic is one of the most devastating health disasters in recorded history. While other pandemics are reported to have killed more, such as the Black Death in the late Middle Ages and the H1N1 1918–1920 Spanish flu pandemic,1 they mostly took place in times with no vaccination for the pathogen, no modern medicine, less favorable social and hygienic conditions, and no present-day technology that could have reduced viral or bacterial spread.

The fast-paced spread of SARS-CoV-2 has caused severe socioeconomic disruption, with unprecedented events in recent public health history such as national lockdowns. The impact of SARS-CoV-2 on health care has been profound, sometimes devastating. Some photos and videos entered our collective imagery: for example, footage of the Italian army taking the dead out of hard-hit Bergamo in March 2020,2 the makeshift Wuhan hospital in January–February 2020,3 and the New York Times front page on May 24, 2020, announcing “US Deaths Near 100,000, an Incalculable Loss.”4

An Incalculable Loss

SARS-CoV-2 is now recognized as a virus associated with high mortality and morbidity. By late 2023, COVID-19 had caused an estimate seven million official deaths. The real death toll based on excess mortality, however, was estimated at twenty million to twenty-eight million, including by the director general of the World Health Organization (WHO). Additional estimates suggested that the COVID-19 vaccines might have saved up to twenty million lives in the first year of deployment.5

Many more people, however, never fully recovered from the initial infection. They have suffered from persistent ill health, including damage and impairment to multiple organs and body systems, cardiovascular disease, endothelial dysfunction, metabolic disorders, coagulation disorders, and immune system dysfunction, with potential contribution from SARS-CoV-2 persistence and reactivation of latent pathogens.6

The long-term symptoms, signs, and sequelae of SARS-CoV-2 infection are collectively known as long COVID.7 “Long COVID” is a patient-made term that was created and shared for the first time on Twitter (now X) in the spring of 2020. The term was soon adopted by the burgeoning patient community to self-identify, report prolonged disease and sequelae following SARS-CoV-2 infection, and advocate for recognition.

Long COVID has emerged as a major clinical challenge. In the United Kingdom alone, millions have reported long-term symptoms following SARS-CoV-2 infection, as shown by the Office for National Statistics and the REACT-2 study.8 Data from other countries are also of severe concern. WHO Europe shared in June 2023 that thirty-six million in the European region might have experienced long COVID by then.9 An estimate of one hundred million long COVID cases worldwide was published as a preprint in 2021 and updated to two hundred million in 2022.10 A tweet by the WHO in April 2023 acknowledged that “hundreds of millions of people will need longer-term care.”11 A Nature Reviews Immunology article from July 2023 suggested that four hundred million could be in need of support for long COVID worldwide.12

The exact number of long COVID cases remains unconfirmed due to different data collection methods and lack of diagnosis in certain populations. Yet the published literature, the concerns by several policymakers, and the lived experience of people with long COVID highlight the severe disease burden. In a scientific letter from September 2020, my coauthors and I defined the costs of long COVID as “unfathomable”—almost too enormous to be quantified.13 In a New York Times opinion piece from March 2021, Fiona Lowenstein and Hannah Davis described the COVID-19 pandemic as potentially turning into “one of the most disabling events in modern history.”14

The long-term effects of SARS-CoV-2 infection will likely reverberate for generations. They must be addressed within a disaster study framework and warrant extensive investigation of the challenges ahead.

History: The Rise of Long COVID

Already in early 2020, COVID-19 survivors and those from other chronic illness communities started to raise the alarm on the catastrophic effects of unmitigated SARS-CoV-2 spread and the enormous disease burden to come.15 This came in advance of policymaking and conventional medicine, which had not taken into account or fully appreciated COVID-related morbidity at the time. Morbidity was poorly accounted for, especially in the case of nonhospitalized, “young,” previously “healthy” patients. Those with “mild” or “asymptomatic” disease were supposed to rebound from infection quickly.

Instead, early characterizations of COVID-19 proved to be incorrect or partial. Patients with severe COVID-19 in early hotspots were often left with poor or no medical care. They were sometimes phone-triaged and left at home with life-threatening pathology. Overwhelmed health care in a disaster context created a cohort of people who were severely affected by COVID-19 but were often unable to find support except for online spaces, including support groups and platforms such as Twitter. Many have existed in a limbo with unmet medical needs for a severe disease, which was left untreated already in the early phase of infection.

Long COVID and cognate terms such as “long-haul COVID” and “long haulers” were coined and brought to wide attention in the first pandemic months by a grassroots, international, patient-led movement in which I participated actively.

Long COVID was identified, named, and defined collectively by COVID-19 survivors.16 Intense mobilization via social and other media successfully challenged early official guidelines, which stated that recovery from COVID-19 would occur within took two to six weeks from symptom onset. Advocacy also challenged early definitions of COVID-19 as a self-contained respiratory disease, the severity of which was adjudicated on pneumonia severity and the risk for respiratory and organ failure, especially in elderly cohorts. Social media such as Twitter were instrumental in drawing attention to prolonged symptoms, signs, and sequelae from SARS-CoV-2 infection. They were also critical in the emergence and consolidation of the patient-made term.

“Long COVID” itself is a contraction of terms, such as “long-term COVID-19” illness, which I started using in early 2020 to address prolonged disease and sequelae from SARS-CoV-2 infection. The definition of long COVID as a multisystemic, multidimensional disease entity by COVID-19 survivors took place via different means. Crucial was the widespread engagement of patients with online discussions on prolonged symptoms and sequelae in connection with patient-made hashtags. Early hashtags and patient-made terms, such as #covidpersistente, #apresJ20 (by @lapsyrévoltée), #LongCovid-Long Covid (by this chapter’s author), “Long Haul COVID.” and #longhaulers-long haulers (by Amy Watson),17 correctly identified COVID-19 as a prolonged disease in a significant number of individuals. Long COVID was made into a hashtag, #LongCovid, by the term’s creator as a way to link together people and knowledge that was being produced across different fields and locally situated patient movements.18 The hashtag was embraced by many as such. By analyzing thirty-one thousand tweets from May to August 2020 containing #LongCovid and/or #longhaulers, Melody Turner and colleagues concluded that “Twitter users raised awareness of long COVID by providing social consensus on their long COVID symptoms. . . . This social consensus fostered a collective social movement.”19

Equally important was patient engagement with growing scientific literature on COVID-19, which patients were sharing and commenting on in social media, including under patient-made hashtags. In a tweet of mine, for example, early Italian data on “long-term and potentially permanent” lung sequelae are mentioned by using #LongCovid.20 Also key, I argue, was the sharing of one’s objective clinical signs and data across different platforms, including social media, chat apps such as WhatsApp, private correspondence, the press, and academic publications: for example, nonfatal respiratory “decompensation” in the second week from symptom onset, relapsing-remitting hypoxia, prolonged anosmia, prolonged fever, cardiovascular disease, kidney disease, delayed thromboembolism, microvascular damage to the lung bed identified via the SPECT-CT scan, coagulation abnormalities, and raised D-dmer well beyond “acute” COVID-19.21 Innovative forms of data collection and analysis were developed by people with persistent symptoms in support groups and via social media: for example, by means of surveys, tweets, Twitter threads, interviews, videos, blogs, first-person accounts, and polls.22

Support groups and informal connections built online, through Facebook, Slack, WhatsApp, and Twitter, were being developed into research collectives, scientific collaborations, and advocacy hubs by late 2020. By 2022, many such collectives had grown into formally recognized charities, funded research groups, or advocates/patient-researchers recognized as experts. Multiple new initiatives emerged between 2020 and 2023, including the use of Twitter Spaces for live audio conversations and the #longcovidawarness project.

Health care professionals, academics, and scientists with long COVID participated in knowledge production.23 Interdisciplinary contributions by patient-researchers/advocates with backgrounds in diverse fields, such as linguistics, (bio)archaeology, and the medical humanities, have been crucial to building and consolidating a new terminology to define a disease: for example, “long,” rejection of the acute-postacute dichotomy, and reflection on terms such as “syndrome” and “mild,” especially when referring to COVID-19/long COVID. Similarly important was the presence, among early advocates, of people with experience of chronic disease/disability, and researchers already working on disability. Some early advocates had also experienced and/or studied diseases triggered by infection before COVID-19 including myself, which facilitated recognition of the challenges ahead. Contributions by people with expertise in a wide range of professions (e.g., journalism) was also important in raising awareness of prolonged illness or tortuous, difficult recoveries.

Fundamental was documenting the history of long COVID’s rise and identification by patients in real time. This gave solidity to the patient-driven research-advocacy movement as a social, scientific, and historical phenomenon. The first in-depth account of the movement’s rise was written as a peer-reviewed contribution by two researchers with lived experience of the disease.24 Patient advocacy in long COVID has built upon and sparked renewed interest in journalism, policymaking, and academia into citizen science, disability activism, and the history of patient movements, including around HIV/AIDS, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and long COVID itself.25

Paradigm Shifts in Long COVID and Beyond

Epistemic Authority: A Patient Revolution

The patient-made term “long COVID” is now widely used in the scientific literature as well as by policymakers, health care professionals, the media, and major health bodies.

Long COVID has been described as the first illness identified, named, and defined by patients finding one other on social media,26 a movement intended to “help change medicine,”27 a movement that “changed the production of science,”28 a “revolution,”29 and a “movement that changed the arc of medical history.”30

As a patient-made term, a disease entity, and a collective movement that gained wide recognition in just a few months, long COVID prompted significant changes in how scientific knowledge is built and recognized. Such changes will be hopefully durable. However, many challenges lie ahead, as discussed below. Those with long COVID have produced groundbreaking research, advocacy, and science communication. This often happened in advance of conventional medicine and contributed to changing how COVID-19 is understood and communicated.

The case of long COVID is crucial because it highlights the knowledge that lies within a patient community: “Long COVID empowers the patient voice.”31 Those with long COVID have commanded epistemic authority and must be recognized as experts on SARS-CoV-2 infection in their own right. The work that advocates/patient-researchers did is striking, given the limitations of the pandemic’s disaster context.

Advocacy in long COVID helped widen the range of actors who are involved in public health decision-making and defining diseases and concepts of disability. Patient-driven advocacy research was instrumental in the landmark WHO meeting of August 2020, which publicly recognized long COVID.32 Patient advocates/researchers, including those who are not medical professionals, have variously contributed to health care guidelines, conducted research, supported nonpatient scientists, advised policymakers, written high-profile policy, and appeared in the press as experts. The role of COVID-19 survivors in long COVID’s identification is recognized in policy documents and publications. It must not be erased.

I hope that the experience of long COVID will further galvanize different patient communities to strongly engage in grassroots activism and policymaking.33 This is a delicate point, however, that must be addressed with sensitivity. The onus of advocacy cannot be on patients alone, especially in a world severely affected by SARS-CoV-2. Yet policymakers and new advocates/allies need to be aware of the long-term struggles and successes of the disability community across space and time, including COVID-19 first wavers. Because the research-policy landscape evolved fast between 2020 and 2023, people might not be aware of long COVID’s origins as a patient-made term born in early 2020 from a collective, grassroots, international movement of survivors.

While the onus of advocacy should not be on people with lived experience alone, patient expertise must be incorporated into decision-making on matters of health and health care at the highest level. The contributions of patients to science must be fully acknowledged with accuracy and precision.

Recognition of Diseases Caused by Viral and Other Infections

Advocacy research around long COVID have triggered a paradigm shift in awareness and understanding of the prolonged nature of many diseases caused by viruses and other pathogens.34 This goes beyond widespread awareness of HIV/AIDS, which predated the COVID-19 pandemic. The work of long COVID advocates/patient-researchers and the wider long COVID and disability patient community must be recognized in contributing to this paradigm shift. At the same time, the history of earlier patient movements, such as around HIV/AIDS and ME/CFS, can provide inspiration to address topics such as responses to emerging infectious diseases in different historical moments and how a pathogen’s nature may impact activism and public health responses (e.g., SARS-CoV-2 is airborne, and COVID-19 can be fatal already in the “acute” phase).35

Notably, the COVID-19 pandemic has been concomitant with some breakthroughs on the link between infections and their sequelae: for example, the link between the Epstein-Barr virus and multiple sclerosis and the potential of the Ebola virus for latency.36 We must capitalize scientifically and clinically on these breakthroughs.

New awareness of the long-term effects of viral and other infections is bringing more visibility to conditions triggered by infections beyond long COVID, including via the use of hashtags on social media such as #pwME, #MECFS, #POTS,37 and #longSARS.38 This must result in targeted funding, high-quality biomedical research, diagnostics, treatment, and support. I highlight again conditions such as ME/CFS, dysautonomia, postsepsis syndrome, and postinfectious vasculitis. Many of these diseases have remained poorly researched, communicated to stakeholders, and clinically treated. The long-term fight for recognition by patients must be honored and recognized.

Virus-induced lung diseases are another widespread clinical challenge deserving of consideration as sequelae of SARS-CoV-2 and other infections while acknowledging the severity of COVID-related lung pathology.39 There is growing awareness of other poorly researched conditions, such as fibromyalgia and connective tissue disorders. Notable is a growing interest in their possible autoimmune and/or (post)infectious components.40 I also encourage engagement with clinical and patient-led expertise on autoimmune, thrombotic, and inflammatory conditions. This is because of evidence of autoimmunity, coagulation abnormalities, and inflammatory processes in both acute and long COVID. Viral and other infections have been known to affect the coagulation cascade and vascular system, but the specific pathways remain to be elucidated.41 This is especially the case for the long-term effects of these disease processes, which might extend to conditions emerging far from infection. Another important research avenue is about similarities and differences in the pathophysiology and sequelae of various pathogens.

We must address diseases triggered by viral and other infections as complex clinical entities, which would benefit from interdisciplinary biomedical approaches for optimal understanding. More attention must also be paid to the sequelae of infectious diseases such as Ebola, Mpox (formerly monkeypox), and dengue.42 Some of these diseases have been eliminated in more affluent countries, while the clinical needs of people in less privileged areas remain unmet; the resurgence or new introduction of these diseases in wider areas, such as temperate Europe, is also concerning.

Importance and Risks of Digital Engagement

Long COVID highlighted how digital tools and social media can accelerate biomedical innovation.43 Strategies that have proven key to grassroots long COVID advocacy in our digital era could be further explored and expanded. For example, patient-led connections built on social media and online engagement of researchers with people with lived experience can foster scientific innovation. Routine, direct, and ethical engagement with patient-driven knowledge production on social and other media would be a step forward.

However, ethics and biases around data collection and data mining from sources such as Twitter and support groups, for example, must be at the forefront of discussion. The ephemeral nature of digital data should be too, with specific reference for long COVID to data produced in 2020–2021, when people with lived experience were key drivers of scientific discovery. There are concerns about the future of Twitter and other digital platforms.44

The risk of exploitation of patient-produced research, data, and hypotheses remains high. Access to digital data in view of specific tools and knowledge can favor groups of advocates and researchers with the know-how over others. Access to long COVID data, funding, academic connections, and support from private companies can have massive impacts in terms of financial reward, career advancement, and even access to care. Collection of patient data via newly established digital platforms and apps is another concern in view of privacy, data exploitation, and profiteering. These risks should be addressed in bioethics, policymaking, advocacy, and the open science movement.

Recognition of Groundbreaking Patient Contributions in Long COVID: Ableism, Epistemic Justice, and Misogyny

Long COVID has been called the first disease to be named, identified, and defined collectively on social media by people living with the condition.45 The early long COVID movement was largely built on women’s leadership and contributions. Critical was also the role of people from marginalized/minoritized communities, including people already disabled or chronically ill prior to COVID-19. This was especially the case for the first wave in 2020, when women were more involved in online discussions about long COVID.46 They also largely led in advocacy research, thereby bearing the brunt of fighting for recognition when long COVID was basically out of the medical gaze, especially in nonhospitalized patients. These contributions to knowledge have been groundbreaking and must be recognized as such. As of 2023, there is recognition of the movement’s key importance and of some advocates and patient-led groups. However, a worrying scenario is emerging in some contexts whereby only some actors are receiving credit or are publicly recognized for groundbreaking work on long COVID: for example, health officials and researchers who entered the arena later than patients and scientists and advocates with more visibility and access to media and certain networks of power (including patients with less severe disease).

There are also issues around nomenclature, namely the “renaming” of patient-made long COVID by actors, such as health bodies, who recognized long COVID only after the patient community did. These actors have not always appreciate the nature and severity of long COVID as a disease entity; newly introduced terminologies include postacute sequelae of SARS-CoV-2, or PASC, and post–COVID-19 condition.47

Some earliest advocates/patient-researchers have left advocacy or remain anonymous. Some are struggling financially, are unable to work, have no access to care and decision-making, or cannot protect themselves from reinfection. In addition to personal suffering, this precludes further involvement in research breakthroughs and recognition of these people’s early contributions to advocacy research. Knowledge and expertise are therefore lost or unrecognized. The unpaid, unrecognized labor by many on long COVID is another ethical issue to address in advocacy, policymaking, and the medical-scientific community, which often benefits from such labor.

I encourage recognition of long COVID as a collective, international, grassroots scientific-advocacy movement, in addition to highlighting, when appropriate and with accuracy, contributions by specific advocates. This is to render justice to the scientific work and contributions to knowledge of those who have no access to media, academic support, funding, and political power as well as of those who are too ill, have no opportunity to speak up publicly, or have passed away.

If we look beyond long COVID, some conditions I mentioned above, such as fibromyalgia, autoimmune diseases, and ME/CFS, are more commonly reported in women. This makes gender-based discrimination a likely factor in the reduced opportunities for treatment and recognition.48 This could have an impact on patient-led advocacy research for these diseases too: gender-based discrimination is well documented in academia and medicine, in addition to ableism and discrimination based on health status.49 Men and LGBTQ+ community members may face their own barriers to care and recognition, especially for diseases often characterized as more common in women and individuals identified as female.

Erasure of expertise and contributions by patients is especially evident for those from marginalized communities, including in medicine and academia: disabled people, women, those from the Global South and non-Anglophone countries, people with no medical or formal scientific training, and those who do not have access to high-profile health bodies, networks of political power, and academic prominence. Epistemic injustice can slow down innovation, in addition to affecting directly the well-being and recognition of those directly impacted.

Ethical forms of engagement around data collection, data production, and recognition of expertise shared in digital frameworks such as Twitter represent a challenge deserving attention. Disruption of the normative ways to reward biomedical innovation is necessary. This is not easy in view of how scientific discovery is acknowledged in medicine and conventional research: for example, by focusing on high-impact journals and on credentialed actors from prominent institutions, especially if male, white, able-bodied, and/or from certain social classes and networks. The pandemic disaster context, however, requires new ways of engaging with cutting-edge information produced outside the normative channels of biomedicine by people often abandoned with no care.

Nature and the Scope of Long COVID

The biomedical literature published since 2020 has confirmed the concerns raised by the long COVID patient community early in the pandemic. Initially presented as an acute respiratory disease that could lead to pneumonia and respiratory failure, COVID-19 has been increasingly characterized as a multisystem disease with extensive extrapulmonary manifestations and strong cardiovascular-endothelial components.50 Similarly, prolonged pathology and sequelae in multiple organs and body systems have been widely described, thereby confirming the patient community’s early reports.

Despite extensive confirmation of SARS-CoV-2 infection’s dangers, many challenges lie ahead. Key is recognition of the disease’s nature and severity. Both the lived experience and biomedical literature show that long COVID can be multisystem, disabling, and life-threatening. I remain concerned about erroneous descriptions of long COVID as “rare,” “mysterious,” and “poorly characterized.” I warn against glossing over potentially fatal outcomes such as cardiovascular events that are reported even after subclinical/ paucisymptomatic pathology and far from infection.51 Erroneous portrayals of long COVID are delaying access to care.

COVID-19 and long COVID are among the most studied diseases in history. As of September 2023, a search for “COVID” on the repository for medical papers, PubMed, rendered around 382,000 entries, thousands of which were on long COVID alone, including under alternative nomenclatures, such as PASC.

The longest-term sequelae of SARS-CoV-2 infection remain to be fully elucidated. However, the evidence already available and comparisons with other pathogens, including SARS-CoV-1, are worrisome and should inform policy.52 As of 2023, many remain without health care access even for conditions associated with long COVID for which treatment is potentially available such as diabetes. Trials are lagging behind. Funding is not appropriate for the massive disease burden. The gap between research knowledge and treatment availability must be closed fast. Clinical care and research must be patient-centered and patient-driven. The different disease pathways and clinical manifestations in long COVID must be adequately assessed. Interventions should take place promptly as to avoid deterioration.

Disability and Pandemic Policy

Fundamental is legal recognition of long COVID and associated complications as a disability. While not everyone will be impaired to the point of being unable to support themselves, many experience a reduction in quality of life and ability; worsening health is reported in some far from infection. Recovery must not be taken for granted. Some conditions associated with long COVID are or might be lifelong. Patients need access to financial and health care support. There is concern over the number of people who are losing jobs, housing, and health care.53 The huge number of long haulers around the world is contributing to socioeconomic, health-related, and personal downturns. Recognition of disability must include nonhospitalized patients and those without positive polymerase chain reaction, rapid antigen, and serology tests. There are issues regarding access to and the reliability of SARS-CoV-2 testing.

Access to disability and health care services must be in line with the disease’s high burden and features. Long COVID is not rare. It may present as a multisystem, energy-limiting condition with a relapsing-remitting, cyclic, and/or progressive pattern as well as persistent symptoms and disability. Patients might be housebound, might experience cognitive limitations, or suffer from a worsening of symptoms after exertion. Disability systems are often difficult to access. This warrants improvement also for diseases posing challenges similar to long COVID. Accessibility is an urgent issue in view of ongoing SARS-CoV-2 spread. There is risk of infection in unsafe, poorly ventilated spaces. People with long COVID and other chronic conditions might be particularly vulnerable to severe COVID-19, including from reinfection. Immune escape variants are troubling in this regard.

Sustained SARS-CoV-2 spread, austerity, and damage to health care systems by COVID-19 are contributing to huge delays in health care access. Access to care must not be based on privilege or even mere luck, such as living in affluent areas with high-quality hospitals. As of 2023, long COVID was not adequately addressed in policymaking while remaining an urgent topic. Vaccine equity, development of next-generation vaccines, policies of containment of SARS-CoV-2, and equitable access to health care and clean air should be key to public health action as a way to prevent or reduce not only mortality but also morbidity and social disruption from SARS-CoV-2 infection.

Conclusion

The COVID-19 pandemic is one of the greatest public health emergencies in recent history and the deadliest pandemic from a respiratory virus in a century. It can be conceptualized within the framework of disaster studies. In addition to the significant death toll, the pandemic is leaving behind a devastating long trail of prolonged disease and disability. The long-term symptoms, clinical signs, and sequelae of SARS-CoV-2 infection are known as long COVID—a patient-made term that was created and gained consistency in just a few months in early to mid-2020. Long COVID was openly recognized by the WHO in August 2020, following intense advocacy by COVID-19 survivors. As of February–September 2023, hundreds of thousands of scientific publications detailed the severe effects of SARS-CoV-2 infection, spanning basically all organs and body systems. Several thousand such publications show multisystem, prolonged disease and sequelae in long COVID with various outcomes, from subclinical to fatal. The earliest publications on long COVID as a clinical entity and a patient-led research-advocacy movement were by those living with the disease. This was also the case for early reports of prolonged, multisystem illness after SARS-CoV-2 infection. These reports initially emerged through means that are outside the formal channels of biomedical research, including as posts on social media sites such as Twitter.

Patient-driven research and advocacy in long COVID has contributed to many critical innovations and paradigm shifts in knowledge production, awareness of infection-triggered diseases, biomedical research, policymaking, and citizen science in our digital era. Twitter and other social media were critical in reaching the goal of long COVID identification and recognition at the speed of light in 2020 and early 2021. Long COVID can be seen as a pathbreaking crowdsourced, open-science movement in a disaster context. This advocacy research filled the gap between official descriptions of COVID-19 and the embodied reality of the disease in just a few months. It also allowed for bridging the knowledge gap between the understanding of acute COVID-19 and the existence of prolonged disease with multiple sequelae in a rapid, effective manner.

I recommend that the patient-driven, collective, open research model that gained wide recognition in the early months of long COVID become the norm for COVID-19 and other diseases. I hope that patient-centered collectively built expertise will be increasingly incorporated within biomedical communities in our digital era. This would contribute critical changes in medical awareness of chronic diseases and patient care, and expedite innovation. Activism around other diseases, such as HIV/AIDS, constitutes an important historical precedent and a topic to explore in relation to long COVID: for example, by comparing public health responses and advocacy tactics across space and time. Many challenges, however, lie ahead, ranging from full recognition of long COVID’s severity to lack of care for many survivors. Other challenges involve epistemic justice, disability activism in a digital era, pandemic management, and the recognition of patient expertise beyond the formal channels of biomedical research. Ethical forms of engagement around data collection, data production, and acknowledgment of patient-driven discoveries shared in a digital framework such as Twitter represent a challenge deserving attention. Disruption of normative ways to reward innovation and develop medical solutions is necessary. This is not easy because of how scientific discovery and health expertise are acknowledged in medicine, conventional research, and society.

Notes

1. 1.  Kristen E. Bos et al. “A Draft Genome of Yersinia pestis from Victims of the Black Death,” Nature 478 (2011): 506–10, https://doi.org/10.1038/nature10549; and Jessica A. Belser and Terrence M. Tumpey, “The 1918 Flu, 100 Years Later,” Science 359, no. 6373 (2018): 255, https://doi.org/10.1126/science.aas9565.
2. 2.  Jason Horowitz, “The Lost Days That Made Bergamo a Coronavirus Tragedy,” New York Times, November 29, 2020, https://www.nytimes.com/2020/11/29/world/europe/coronavirus-bergamo-italy.html; and “Covid, un anno fa le immagini dei camion militari a Bergamo,” posted March 18, 2021, by TG2000, YouTube, 1:29, https://www.youtube.com/watch?v=gR5urgjttqQ.
3. 3.  Tasha Wibawa, “China Completes Coronavirus Hospital in Wuhan in 10 Days, with a Second Hospital Almost Finished,” ABC News, February 2, 2020, https://www.abc.net.au/news/2020-02-03/china-completes-wuhan-makeshift-hospital-to-treat-coronavirus/11923000.
4. 4.  “100,000: The Names Behind the Grim Toll,” New York Times, May 24, 2020, https://www.nytimes.com/2020/05/24/opinion/letters/coronavirus-100000-deaths.html.
5. 5.  “WHO COVID-19 Dashboard,” World Health Organization, accessed September 21, 2023, https://covid19.who.int/; Tedros Adhanom Ghebreyesus, “Covid Has Killed ‘at Least 20 Million People’: WHO Chief,” AFP News Agency, May 5, 2023, YouTube, 0:20, https://youtu.be/Pqaw4mqrVWA?si=tpBobt9juvZwOVij; “The Pandemic’s True Death Toll,” The Economist, last updated November 18, 2023, https://www.economist.com/graphic-detail/coronavirus-excess-deaths-estimates; and Oliver J. Watson et al., “Global Impact of the First Year of COVID-19 Vaccination: A Mathematical Modelling Study,” The Lancet Infectious Diseases 22, no. 9 (September 2022): 1293–302, https://doi.org/10.1016/S1473-3099(22)00320-6.
6. 6.  Elisa Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed,” Welcome Open Research, June 10, 2022, https://doi.org/10.12688/wellcomeopenres.16307.1; Ziyad Al-Aly, Yan Xie, and Benjamin Bowe, “High-Dimensional Characterization of Post-Acute Sequelae of COVID-19,” Nature 594 (2021): 259–64, https://doi.org/10.1038/s41586-021-03553-9; Andrea Dennis et al., “Multi-Organ Impairment and Long COVID: A 1-Year Prospective, Longitudinal Cohort Study,” Journal of the Royal Science of Medicine 116, no. 3 (2023): 97–112, https://doi.org/10.1177/01410768231154703; and Daniel M. Altmann et al., “The Immunology of Long COVID,” Nature Reviews Immunology 23 (2023): 618–34, https://doi.org/10.1038/s41577-023-00904-7; Benjamin Bowe, Yan Xie, and Ziyad Al-Aly, “Postacute Sequelae of COVID-19 at 2 Years,” Nature Medicine 29 (2023): 2347–57, https://doi.org/10.1038/s41591-023-02521-2; and Benjamin Chen et al., “Viral Persistence, Reactivation, and Mechanisms of Long COVID,” eLife 12 (2023): e86015, https://doi.org/10.7554/eLife.86015.
7. 7.  Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed”; Elisa Perego et al., “Why We Need to Keep Using the Patient-Made Term ‘Long Covid,’” The BMJ Opinion (blog), October 1, 2020, https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/; Felicity Callard and Elisa Perego, “How and Why Patients Made Long Covid,” Social Science & Medicine 269 (January 2021): 113426, https://doi.org/10.1016/j.socscimed.2020.113426; Elisa Perego and Felicity Callard, “Patient-Made Long Covid Changed COVID-19 (and the Production of Science, Too),” SocArXiv, February 9, 2021, https://doi.org/10.31235/osf.io/n8yp6; and Elisa Perego, “Patient-Made Long Covid Empowers the Patient Voice,” SocArXiv, December 22, 2021, https://doi.org/10.31235/osf.io/796am.
8. 8.  “Prevalence of Ongoing Symptoms Following Coronavirus (COVID-19) Infection in the UK: 4 November 2021,” Office for National Statistics, November 4, 2021, https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/4november2021; and Matthew Whitaker et al., “Persistent COVID-19 Symptoms in a Community Study of 606,434 People in England,” Nature Communications 13, no. 1957 (2022), https://doi.org/10.1038/s41467-022-29521-z.
9. 9.  Hans Henri P. Kluge, “36 Million People Across the European Region May Have Developed Long COVID over the First 3 Years of the Pandemic,” news release, WHO, June 27, 2023, https://www.who.int/europe/news/item/27-06-2023-statement---36-million-people-across-the-european-region-may-have-developed-long-covid-over-the-first-3-years-of-the-pandemic.
10. 10.  Chen Chen et al., “Global Prevalence of Post-Coronavirus Disease 2019 (COVID-19) Condition or Long COVID: A Meta-Analysis and Systematic Review,” Journal of Infectious Diseases 226, no. 9 (2022): 1593–607, https://doi.org/10.1093/infdis/jiac136.
11. 11.  WHO (@WHO), “An estimated 1 in 10 infections results in post #COVID19 condition, suggesting that hundreds of millions of people will need longer-term care. @DrTedros,” Twitter, April 26, 2023, 10:09 a.m., https://twitter.com/WHO/status/1651227079684358151?t=P_zxFm7nN9Dpu3obNV_t1g&s=19.
12. 12.  Altmann et al., “The Immunology of Long COVID.”
13. 13.  Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed.”
14. 14.  Fiona Lowenstein and Hannah Davis, “Long Covid Is Not Rare. It’s a Health Crisis,” New York Times, March 17, 2021, https://www.nytimes.com/2021/03/17/opinion/long-covid.html.
15. 15.  Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed”; and Callard and Perego, “How and Why Patients Made Long Covid.”
16. 16.  Callard and Perego, “How and Why Patients Made Long Covid.”
17. 17.  Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed”; Callard and Perego, “How and Why Patients Made Long Covid”; Perego and Callard, “Patient-Made Long Covid Changed COVID-19”; “Association COVID Long France,” ApresJ20, accessed September 27, 2020, https://www.apresj20.fr/; and José Manuel de Cózar Escalante and Javier Gómez-Ferri, “Cultura científica comunitaria para una pandemia. La COVID persistente,” Arbor 198, no. 806 (2022): a673, https://doi.org/10.3989/arbor.2022.806003.
18. 18.  Tamsin Zandstra, “Interview with Elisa Perego, PhD, on Long COVID and Social Media,” Long COVID Initiative, November 17, 2022, https://aboutlongcovid.org/interview-with-elisa-perego-phd-on-long-covid-and-social-media/.
19. 19.  Melody Turner et al., “The #longcovid Revolution: A Reflexive Thematic Analysis,” Social Science & Medicine 333 (September 2023): 116130, https://doi.org/10.1016/j.socscimed.2023.116130.
20. 20.  Elisa Perego (@elisaperego78), “30% of #COVID__19 patients will have long term and potentially permanent lung problems, new data from (Italian flag) Society of Pneum. indicate. Data available for now mainly refer to patients who survived severe #COVID19 infection, including the young #LongCovid,” Twitter (now X), May 27, 2020, https://twitter.com/elisaperego78/status/1265437740717543424?t=dXKHlVftR68PikmMnyfiUw&s=19.
21. 21.  Lisa Jensen, “‘Just Stay at Home’ Was Lonely and Terrifying,” British Medical Journal 371 (2020): m3807, https://doi.org/10.1136/bmj.m3807; Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed”; Callard and Perego, “How and Why Patients Made Long Covid”; Perego and Callard, “Patient-Made Long Covid Changed COVID-19”; Felicity Callard, “Of Smell and Loss: Tweets from a COVID-19 Sickbed,” The Poliphony, April 15, 2020, https://thepolyphony.org/2020/04/15/of-smell-and-loss-tweets-from-a-covid-19-sickbed/; Amali U. Lokugamage, Sharon Taylor, and Clare Rayner, “Patients’ Experiences of ‘Longcovid’ Are Missing from the NHS Narrative,” The BMJ Opinion (blog), July 10, 2020, https://blogs.bmj.com/bmj/2020/07/10/patients-experiences-of-longcovid-are-missing-from-the-nhs-narrative/; Elisa Perego (@elisaperego78), “We’ve been reporting that several patients in #LongCovid have their ddmer raising 10 to 12 months after onset. New cases are emerging in the patient community . This is a serious issue that should be addressed as a matter of urgency,” Twitter (now X), March 10, 2021, https://twitter.com/elisaperego78/status/1369745288118800384?t=yoiajAZyIoQWJONgFyaYkw&s=19; and “Long Covid, la storia di Marta: ‘Sto male da 3 anni. In tanti lottiamo per riprendere vita e lavoro,’” Adkronos, January 23, 2023, https://www.adnkronos.com/long-covid-la-storia-di-marta-sto-male-da-3-anni-in-tanti-lottiamo-per-riprendere-vita-e-lavoro_2g6seRcKZxK0j8Af1lSex8.
22. 22.  Callard, “Of Smell and Loss”; Jensen, “‘Just Stay at Home’ Was Lonely and Terrifying”; Callard and Perego, “How and Why Patients Made Long Covid”; Perego and Callard, “Patient-Made Long Covid Changed COVID-19”; Felicity Callard, “So Many Symptoms,” Medium, July 4, 2020, https://medium.com/@felicitycallard/so-many-symptoms-2f2e98488c65; Felicity Callard, “Very, Very Mild: COVID-19 Symptoms and Illness Classification,” Somatosphere, May 8, 2020, http://somatosphere.net/2020/mild-covid.html/; Gina Assaf et al., What Does COVID-19 Recovery Actually Look Like (Patient-led Research Collaborative, May 11, 2020), https://patientresearchcovid19.com/research/report-1/; and Hannah E. Davis et al., “Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and their Impact,” EClinicalMedicine 38, (August 2021): 101019, https://doi.org/10.1016/j.eclinm.2021.101019.
23. 23.  Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed”; Callard and Perego, “How and Why Patients Made Long Covid”; Perego and Callard, “Patient-Made Long Covid Changed COVID-19”; and Nisreen A. Alwan et al., “From Doctors as Patients: A Manifesto for Tackling Persisting Symptoms of COVID-19,” British Medical Journal 370 (2020): https://doi.org/10.1136/bmj.m3565.
24. 24.  See, for instance, Callard and Perego, “How and Why Patients Made Long Covid.”
25. 25.  Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed”; Callard and Perego, “How and Why Patients Made Long Covid”; de Cózar and Gómez-Ferri, “Cultura científica comunitaria para una pandemia”; Alex Rushforth et al., “Long Covid—The Illness Narratives,” Social Science and Medicine 286 (2021): 114326, https://doi.org/10.1016/j.socscimed.2021.114326; Esperanza Miyake and Sam Martin, “Long Covid: Online Patient Narratives, Public Health Communication and Vaccine Hesitancy,” Digital Health 7 (2021), https://doi.org/10.1177/20552076211059649.; Catherine Tourette-Turgis et al., “Expérience patient, autorité épistémique et enjeux sanitaires: L’exemple du Covid long,” Soins 66, no. 857 (2021): 48–51, https://doi.org/10.1016/S0038-0814(21)00217-6; Joanne Hunt, Charlotte Blease, and Keith J. Geraghty, “Long Covid at the Crossroads: Comparisons and Lessons from the Treatment of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS),” Journal of Health Psychology 27, no. 14 (2022): 3106–20, https://doi.org/10.1177/13591053221084494; and Sonja Mackenzie, “Social Movement Organizing and the Politics of Emotion from HIV to Covid-19,” Sociology Compass 16, no. 5 (2022): e12979, https://doi.org/10.1111/soc4.12979/.
26. 26.  Callard and Perego, “How and Why Patients Made Long Covid.”
27. 27.  Elisa Perego (@elisaperego78), “Today one year ago the term #LongCovid was born as a Twitter hashtag. A single tweet from a person who was not recovering from COVID-19. A single tweet very few noticed at the beginning . . . ,” Twitter, May 20, 2021, 2:17 p.m., https://twitter.com/elisaperego78/status/1395443525437829120?t=j5EGPcmrsoOV_PpXsK98bg&s=1.
28. 28.  Perego and Callard, “Patient-Made Long Covid Changed COVID-19.”
29. 29.  Turner et al., “The #longcovid Revolution.”
30. 30.  Ziyad Al-Aly, “The WHO Is Letting Down Long Covid Patients,” The Guardian, October 17, 2021, https://www.theguardian.com/commentisfree/2021/oct/17/who-long-covid-patients.
31. 31.  Perego, “Patient-Made Long Covid Empowers the Patient Voice.”
32. 32.  Amali Lokugamage et al., “We Have Heard Your Message About Long Covid and We Will Act, Says WHO,” The BMJ Opinion (blog), September 3, 2020, https://blogs.bmj.com/bmj/2020/09/03/we-have-heard-your-message-about-long-covid-and-we-will-act-says-who/.
33. 33.  Perego, “Patient-Made Long Covid Empowers the Patient Voice.”
34. 34.  Perego, “Patient-Made Long Covid Empowers the Patient Voice”; and Perego and Callard, “Patient-Made Long Covid Changed COVID-19.”
35. 35.  Trisha Greenhalgh T et al., “Ten Scientific Reasons in Support of Airborne Transmission of SARS-CoV-2,” The Lancet 397, no. 10285 (May 2021): 1603–5, https://doi.org/10.1016/S0140-6736(21)00869-2.
36. 36.  Kjetil Bjornevik et al., “Longitudinal Analysis Reveals High Prevalence of Epstein-Barr Virus Associated with Multiple Sclerosis,” Science 375, no. 6578 (2022): 296–301, https://doi.org/10.1126/science.abj8222; and Alpha Kabinet Keita et al., “Resurgence of Ebola Virus in 2021 in Guinea Suggests a New Paradigm for Outbreaks,” Nature 597 (2021): 539–43, https://doi.org/10.1038/s41586-021-03901-9.
37. 37.  Miyake and Martin, “Long Covid.”
38. 38.  Elisa Perego (@elisaperego78), “A report written 10 years after the SARS outbreak details the suffering of survivors. Chronic pain, fatigue, lung fibrosis are noted among the sequelae . . .,” Twitter, September 21, 2021, 7:58 p.m., https://twitter.com/elisaperego78/status/1437203952425185284?t=S_bSolmMMPtF7-BsvBmQmw&s=19.
39. 39.  Geyon L. Garcia et al., “Distinct Chronic Post-Viral Lung Diseases upon Infection with Influenza or Parainfluenza Viruses Differentially Impact Superinfection Outcome,” American Journal of Pathology 190, no. 3 (March 2020): 543–53, https://doi.org/10.1016/j.ajpath.2019.11.003.
40. 40.  Andreas Goebel et al., “Passive Transfer of Fibromyalgia Symptoms from Patients to Mice,” Journal of Clinical Investigation 131, no. 13 (2021): e144201, https://doi.org/10.1172/JCI144201.
41. 41.  M. Goeijmbier et al., “Review: Viral Infections and Mechanisms of Thrombosis and Bleeding,” Journal of Medical Virology 84, no. 10 (2012): 1680–96, https://doi.org/10.1002/jmv.23354.
42. 42.  David Alain Wohl et al., “Post-Ebola Symptoms 7 Years After Infection: The Natural History of Long Ebola,” Clinical Infectious Diseases 76, no. 3 (2023): e835–e840, https://doi.org/10.1093/cid/ciac732.
43. 43.  Perego et al., “Why the Patient-Made Term ‘Long Covid’ Is Needed”; Callard and Perego, “How and Why Patients Made Long Covid”; and Perego and Callard, “Patient-Made Long Covid Changed COVID-19.”
44. 44.  Chris Stokel-Walker, “Twitter Changed Science—What Happens Now It’s in Turmoil?,” Nature, December 20, 2022, https://doi.org/10.1038/d41586-022-04506-6.
45. 45.  Callard and Perego, “How and Why Patients Made Long Covid.”
46. 46.  Miyake and Martin, “Long Covid.”
47. 47.  Daniel Munblit et al., “Long Covid: Aiming for a Consensus,” The Lancet Respiratory Medicine 10, no. 7 (2022): 632–34, https://doi.org/10.1016/S2213-2600(22)00135-7.
48. 48.  Nisreen A. Alwan, “The Teachings of Long COVID,” Communications Medicine 1 (2021), https://doi.org/10.1038/s43856-021-00016-0.
49. 49.  Chris Woolston, “Discrimination Still Plagues Science,” Nature, November 29, 2021, https://www.nature.com/articles/d41586-021-03043-y.
50. 50.  Peter Libby and Thomas Lüscher, “COVID-19 Is, in the End, an Endothelial Disease,” European Heart Journal 41, no. 32 (2020): 3038–44, https://doi.org/10.1093/eurheartj/ehaa623.
51. 51.  Franca Del Nonno et al., “Fatal Pulmonary Arterial Thrombosis in a COVID-19 Patient, with Asymptomatic History, Occurred After Swab Negativization,” Thrombosis Journal 19 (2021), https://doi.org/10.1186/s12959-020-00255-6; and Yan Xie et al., “Long-term Cardiovascular Outcomes of COVID-19,” Nature Medicine 28 (2022): 583–90 (2022), https://doi.org/10.1038/s41591-022-01689-3.
52. 52.  Geetanjali Saini and Ritu Aneya, “Cancer as a Prospective Sequela of Long COVID-19,” BioEssays 43, no. 6 (June 2021): 2000331, https://doi.org/10.1002/bies.202000331; Perego, “Patient-Made Long Covid Empowers the Patient Voice”; and Kristine S. Levine et al., “Virus Exposure and Neurodegenerative Disease Risk Across National Biobanks,” Neuron 111, no. 7 (2023): 1086–93.e2, https://doi.org/10.1016/j.neuron.2022.12.029.
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