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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2024. Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection. Washington, DC: The National Academies Press. doi: 10.17226/27756.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

1 Introduction The Social Security Administration (SSA) provides disability benefits to people living with disabilities through two programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Estab- lished in 1956, the SSDI program provides benefits to eligible adults with disabilities who have paid into the Disability Insurance Trust Fund, as well as to their spouses and adult children who are unable to work because of severe long-term disabilities. Enacted in 1972, SSI is a means-tested program based on income and financial assets that provides income assistance from U.S. Treasury general funds to adults aged 65 and older, individuals who are blind, and adults and children with disabilities. As of December 2023, 8.5 million individuals in the United States received benefits through SSDI, and 7.4 million individuals received benefits through SSI (SSA, 2023b). Since the onset of the coronavirus disease 2019 (COVID-19) pandemic in early 2020, many individuals infected with the virus that causes COVID-19, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), have contin- ued to experience lingering symptoms for months or even years after acute infection. Data from the U.S. Centers for Disease Control and Prevention’s (CDC’s) National Health Interview Survey show that in 2022, 6.9 percent of U.S. adults and 1.3 percent of children had Long COVID at some point, while 3.4 percent of adults and 0.5 percent of children had Long COVID at the time of the interview (Adjaye-Gbewonyo et al., 2023; Vahratian et al., 2023). Based on these surveys, it is estimated that approximately 8.9 million adults and 362,000 children reported Long COVID symptoms in the United States in 2022 (Adjaye-Gbewonyo et al., 2023; Vahratian et al., 2023). Among U.S. adults, data from the CDC’s Household Pulse Survey show that the prevalence 15 PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 15 5/21/24 10:49 AM

16 LONG-TERM HEALTH EFFECTS OF COVID-19 of Long COVID declined from 7.5 percent in June 2022 to 5.9 percent in January 2023, then increased to 6.8 percent in January 2024 (NCHS, 2024), reflecting a complex event that has changed over time and continues to evolve. The epidemiology of Long COVID is affected by many drivers, including different variants of the virus, vaccination status, and potentially treatments for acute COVID-19 (e.g., steroids, antivirals). Evidence suggests that individuals infected with the Omicron variant are less likely to develop Long COVID than those infected with earlier variants (Antonelli et al., 2022; Fernandez-de-Las- Penas et al., 2022; Hedberg and Nauclér, 2024), and that vaccination lowers the risk of developing Long COVID (Catala et al., 2024; Lundberg-Morris et al., 2023; Marra et al., 2023; Notarte et al., 2022; Watanabe et al., 2023). Although an area of research interest, evidence is less clear about the effect of treatments for SARS-CoV-2 infection on the risk of developing Long COVID. While some studies have found a reduction in the risk of Long COVID follow- ing treatment with antivirals (Bajema et al., 2023; Fung et al., 2023; Xie et al., 2023), others have not (Congdon et al., 2023; Durstenfeld et al., 2024). There is limited evidence that the use of steroids in the treatment of acute COVID- 19 illness appears to reduce the risk of Long COVID (Davelaar et al., 2023). Despite the overall decline in prevalence since June 2022, the most recently reported figure of 6.8 percent of all U.S. adults represents a large disease burden. Additionally, symptoms of Long COVID such as autonomic dysfunction, brain fog, and post-exertional malaise can impair an individ- ual’s ability to work or attend school for an extended period of time. Even individuals with a mild initial course of illness can develop Long COVID with severe health effects. In January of 2024, approximately 22 percent of adults with Long COVID reported significant activity limitations (NCHS, 2024). It is interesting to note that, although rates of self-reported disabil- ity in the U.S. population have increased since the onset of the pandemic, applications for SSA disability benefits have remained flat (SSA, n.d.b). CONTEXT FOR THIS STUDY The population of individuals with Long COVID is of special interest to SSA as their condition may cause them to meet or contribute to their meet- ing SSA’s criteria for disability. For many individuals with Long COVID, symptoms resolve within 6 months; for some, however, symptoms persist for 12 months or more. Diagnosis, measurement, and treatment of Long COVID are complicated by the relative novelty of the condition, as well as its heterogeneous presentation and symptomology and the episodic nature of many of the associated health effects. SSA has continuously been monitoring disability cases involving Long COVID symptoms. Symptoms reported include, but are not limited to, difficulty breathing, shortness of breath, persistent cough, fatigue, post- exertional malaise, difficulty thinking or concentrating, headache, and joint PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 16 5/21/24 10:49 AM

INTRODUCTION 17 or muscle pain. SSA has issued guidance for disability adjudicators in evalu- ating cases of reported Long COVID symptoms and is in the process of expanding that guidance (SSA, 2022; 2023c). The agency therefore seeks the most current information available on the long-term health and functional effects of COVID-19 as related to SSA’s disability programs. STUDY CHARGE AND SCOPE In August 2022, SSA requested that the National Academies of Sciences, Engineering, and Medicine (NASEM) convene an ad hoc consensus study committee to investigate the state of medical knowledge surrounding per- sistent functional limitations related to a past SARS-CoV-2 infection. The committee included experts in in cardiology; epidemiology; family, inter- nal, and pediatric medicine; health metrics; health policy; immunology; infectious disease; neuropsychology; occupational medicine; occupational therapy; pediatric neurology; and rehabilitation medicine. The committee’s statement of task (SOT) is presented in Box 1-1. BOX 1-1 Statement of Task An ad hoc committee of the National Academies of Sciences, Engineering, and Medicine will review the evidence regarding long-term disability that may result from COVID-19 illness and produce a report addressing the cur- rent status of the diagnosis, treatment, and prognosis of related disabilities based on published evidence (to the extent possible) and professional judgement (where evidence is lacking). In regards to the long-term health effects stemming from COVID-19 infection, the committee’s report will: 1. Identify the committee’s preferred terminology (e.g. Long COVID, PASC, PACS, Post-COVID Syndrome, Long Hauler’s Syndrome); 2. Describe commonly reported and observed long-term health effects and describe what is known about: a. The frequency and distribution of their severity and duration in the general population, as well as any different along racial, ethnic, sex, gender, geographic, or socioeconomic dimensions, or differences specific to populations with particular pre-existing or comorbid conditions; b. Clinical standards for diagnosis and measurement of the specific health effects or identified patterns or clusters of health effects; c. Any special considerations regarding the health effects’ identifica- tion and management in special populations including pregnant people and those with underlying health conditions; continued PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 17 5/21/24 10:49 AM

18 LONG-TERM HEALTH EFFECTS OF COVID-19 BOX 1-1 Continued d. Best practices to quantify the functional impacts of those health effects; and e. Identified challenges for clinicians in evaluating persons with those health effects; 3. Identify and describe the tests, findings, and signs currently clini- cally accepted to establish a history of COVID-19 in the following three categories: a. Tests for SARS-CoV-2; b. Findings from antibody tests or other diagnostic tests; and c. Signs consistent with COVID-19; 4. Identify any methods generally accepted by the medical community to establish a history of COVID-19 in patients that are not covered by the following three categories: a. A report of a positive viral test for SARS-CoV-2, b. A diagnostic test with findings consistent with COVID-19 (e.g., chest x-ray with lung abnormalities, etc.), or c. A diagnosis of COVID-19 based on signs consistent with COVID-19 (e.g., fever, cough, etc.);   5. Identify patterns of long-term, work-related functional decline ob- served in adults and the frequency, severity, duration, risk factors, and associated signs or laboratory findings;   6. Identify distinct patterns of long-term functional decline observed in children and the frequency, severity, duration, risk factors, and associated signs or laboratory findings;   7. Identify any trends in the frequency, severity, and duration of functional decline, including those specific to different racial, ethnic, sex, gender, geographic, or socioeconomic groups and those specific to populations with particular pre-existing or co- morbid conditions;   8. Describe any variations in functional or long-term effects based on initial infection with the various identified strains of the virus or based on vaccination status, both at the time of initial infec- tion and illness or that are long-lasting; and   9. Summarize completed, on-going, or planned research, and any resultant medical knowledge, regarding similarities between this condition and impairments such as fibromyalgia or myalgic en- cephalomyelitis (chronic fatigue syndrome), including mechanisms of action, effective testing regimes, prognosis and progression, and potential treatments. 10. Summarize the committee’s conclusions regarding best practices for assessing disability in these populations. The report will include findings and conclusions but not recommendations. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 18 5/21/24 10:49 AM

INTRODUCTION 19 STUDY APPROACH The committee’s statement of task included many individual questions regarding Long COVID. The committee chose to aggregate those questions into three major groupings to facilitate its review of the relevant litera- ture: (1) methods for establishing a history of COVID-19, (2) commonly reported and disabling health effects of COVID-19 in adults and children, and (3) functional trajectories related to those health effects. The committee limited its literature search to articles published in English, but examined many studies conducted outside the United States that otherwise met its inclusion criteria. Initial searches were conducted on PubMed, Embase, and Scopus, yielding more than 1,300 articles selected from the tens of thousands published since the pandemic began in early 2020 (Appendix B). This large volume of source material precluded conducting formal sys- tematic reviews that would meet standards published by the Institute of Medicine in 2011 (IOM, 2011), and the committee did not find systematic reviews on these three topics published by other investigators. Instead, the committee developed criteria for determining relevance to the statement of task by focusing on larger populations followed for at least 6 months and including significant symptoms and functional outcomes. In general, studies with very small numbers of subjects, short durations, and particular study designs (e.g., case control studies) were excluded, but occasionally referenced during the committee’s discussions. Recognizing that literature on Long COVID is rapidly evolving, members of the committee used their expertise throughout the study to identify other studies in progress and perspectives not yet represented in publications. It is important to recognize that results from studies conducted at the height of the pandemic will need to be interpreted in light of new information, new SARS-CoV-2 variants, and other shifts in the epidemiology of COVID-19. The committee discussed at length which health effects to include in this report, balancing usefulness to SSA with inclusiveness that might inform a larger audience. It decided to focus on health effects that appear to impact function most significantly and that result in visits to Long COVID clinics, finding that many of these health effects are not well understood and are challenging to treat. The committee also reviewed other issues known to be relevant to Long COVID, such as in hospital and intensive care unit (ICU) settings, rehabilitation strategies, selected populations, and pediatrics. Ultimately, the literature selection was made by consensus judgment of the committee members based on population, study design, measurement, and clinical and functional outcomes relevant to the statement of task. In addition to examining the published literature, the committee com- missioned a paper on chronic conditions similar to Long COVID, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyal- gia, and hypermobile Ehlers-Danlos syndrome. The committee supplemented the paper’s findings with systematic reviews on the same topics. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 19 5/21/24 10:49 AM

20 LONG-TERM HEALTH EFFECTS OF COVID-19 The committee met seven times; three of these meetings included public sessions with invited speakers. Topics at the public workshops included • the natural history of Long COVID and potential mechanisms of action; • current practices in defining and diagnosing Long COVID; • research advances under way in COVID-19 diagnosis; • similarities between Long COVID and ME/CFS; • experiences of Long COVID patients and their caregivers; and • experiences of clinicians who treat Long COVID. Finally and importantly, the committee’s work was informed by pre- sentations from individuals with lived experience of Long COVID, made at a concurrent NASEM workshop titled Symposium on Long COVID: Examining the Working Definition, hosted by the Committee on Examining the Working Definition for Long COVID (NASEM, 2023b);1 by follow-up presentations from two individuals with lived experience who originally spoke at a 2022 SSA-sponsored workshop titled Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration (NASEM, 2022a); and by two committee members with lived experience. The committee also used materials from previous NASEM reports: Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration (NASEM, 2022a); Selected Heritable Disorders of Connective Tissue and Disability (NASEM, 2022b); Functional Assessment for Adults with Dis- ability (NASEM, 2019); and Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (IOM, 2015), in addition to a workshop examining overlap in Long COVID and other chronic conditions. Finally, the com- mittee reviewed the proceedings of a workshop titled Toward a Common Research Agenda in Infection—Associated Chronic Illnesses: A Work- shop to Examine Common, Overlapping Clinical and Biological Factors (NASEM, 2024). TERMINOLOGY AND DEFINITIONS Long COVID In May 2020, shortly after the beginning of the COVID-19 global pandemic, several accounts by patients in online forums (Twitter, Reddit, 1 A recording of the workshop can be viewed at this link: https://www.nationalacademies. org/event/06-22-2023/examining-the-working-definition-for-long-covid-workshop (accessed January 17, 2024). PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 20 5/21/24 10:49 AM

INTRODUCTION 21 and others) and mainstream media (OpEd pieces) started to emerge, report- ing that many previously healthy individuals had not fully recovered from COVID-19 and were experiencing lingering health problems. These patients leveraged social media platforms to share their experiences with these lin- gering health effects. They started to refer to themselves as “long haulers” and coined the term “Long COVID” (Callard and Perego, 2021). The first known use of the term “Long COVID” dates back to a tweet by Eliza Perego (an Italian archeologist) and a previously healthy individual who had COVID-19 in early 2020 but continued to have lingering health effects. Semantically, the term is meant to describe the multitude of persis- tent health problems experienced after acute SARS-CoV-2 infection. The term has since gained momentum, evolving to become an umbrella term encompassing all the (initially reported and subsequently discovered) long- term health effects of SARS-CoV-2 infection. It is the most commonly used term by patients, health care providers, public health officials, governments, and the public at large. In this report, the committee opted to use the term “Long COVID” not only because it is the first, most inclusive, and most widely used term denoting the long-term health effects of SARS-CoV-2 infection, but also because it recognizes the voices of patients who first alerted the world and the medical and scientific communities that SARS-CoV-2 infection can lead to long-term health consequences. Other terms used to describe the long-term health effects of SARS-CoV-2 include post-acute sequelae of SARS-CoV-2 or post-acute sequelae of COVID-19, Post-COVID Syn- drome, Post-acute COVID Syndrome, Post-COVID Condition, Post-COVID Conditions (condition is pluralized), Long Haulers Syndrome, and many others. Annex Table 1-1 at the end of this chapter lists the most common terms and their definitions. The International Classification of Diseases and Related Health Problems, 11th Revision (ICD-11) code for Long COVID is “Post COVID-19 condition” (WHO, 2023). Given the evolving terminol- ogy, many of the other terms found in Annex Table 1-1 may also appear in the medical record. The definition of Long COVID continues to evolve as well; numer- ous definitions are used in the literature, along with varying lengths of time after infection. A separate National Academies committee concur- rently examined the working definition of Long COVID (EnSpark Con- sulting, 2023; NASEM, 2023a). The current federal working definition is as follows: Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The signs, symptoms, and conditions are present four weeks or more after the initial phase of infection; may be multisystemic; and may present with a PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 21 5/21/24 10:49 AM

22 LONG-TERM HEALTH EFFECTS OF COVID-19 relapsing-remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection. Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes. (HHS, 2022) A challenge in defining Long COVID is that that the definition needs to be broad enough to be inclusive but specific enough to be useful. Disability Recent reports of the National Academies have provided detailed back- ground on the evolution of concepts of disability over the past several decades (NASEM, 2019, 2020, 2021). One relevant conclusion from those reports is the growing recognition that the effects of a given medical condi- tion on functioning, activities, and participation are mediated by an indi- vidual’s physical and social environments, as well as a variety of personal factors. This recognition has been embodied in the framework for disability developed by the World Health Organization (WHO) in the International Classification of Functioning, Disability, and Health (ICF) and illustrated in Figure 1-1. FIGURE 1-1  International Classification of Functioning, Disability and Health Framework SOURCE: WHO, 2001, p. 18. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 22 5/21/24 10:49 AM

INTRODUCTION 23 This framework shows the interactions among health conditions, body functions and structures (i.e., physiological functions of the body, includ- ing psychological functions, and functioning of body structures), activity (i.e., actions or tasks), and participation (i.e., performance of tasks in a social context, such as school or work), all of which are elements of the conceptualization of disability, and all of which are mediated by contextual factors, including environmental and personal factors (WHO, 2001). Note that the arrows in the diagram are bidrectional since the relationships can involve feedback. Different agencies and organizations have defined disability in various ways. However, most definitions include the concept of a physical or mental impairment combined with the inability to fulfill social roles or expecta- tions. SSA’s definition of disability for adults incorporates a length of time and whether a person can perform work. Specifically, to receive disability benefits (SSDI or SSI) from SSA, an individual must meet the statutory definition of disability, which, for adults, is the “inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”2 Substantial gainful activity is defined via an earnings threshold. In short, for an adult to be deemed disabled, a medi- cal condition must lead to limitations that themselves affect the ability to engage in substantial gainful activity in the labor market. A child under age 18 is considered disabled if he or she “has a medically determinable physi- cal or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”3 A finding of disability in both adults and children depends on the severity of functional limitations arising from the claimant’s impairment or combination of impairments. When SSA evaluates a disability claim based on a physical or mental impairment, it requires sufficient evidence to (1) establish the presence of a medically determinable physical or mental impairment or impairments, (2) assess the degree of functional limitation the impairment(s) imposes, and (3) establish the expected duration of the impairment(s). Once SSA has established the presence of a severe medically determinable physical or mental impairment(s), it determines whether the impairment(s) meets or medically equals (is equivalent in severity to) the criteria in the Listing 2 C.F.R. § 404.1505. 3 42 USC § 1382(c). PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 23 5/21/24 10:49 AM

24 LONG-TERM HEALTH EFFECTS OF COVID-19 of Impairments (Listings).4 The Listings are applied in step 3 of the sequential evaluation processes for adults and children. For adults, the Listings describe, for each of the major body systems, impairments SSA considers to be severe enough to prevent a person from engaging in any gainful activity, regardless of his or her age, education, or work experi- ence, and serve as a “screen-in” step. When an impairment is severe but does not meet or medically equal any of the Listings, SSA assesses in step 4 whether the applicant’s physical or mental residual functional capacity allows her or him to perform past relevant work. Applicants who are able to perform past relevant work are denied benefits, while those who are unable to do so proceed to step 5. At step 5, SSA considers, in combina- tion with the applicant’s residual functional capacity, such vocational factors as age, education, and work experience, including transferable skills, in determining whether the individual can perform other work in the national economy. Applicants determined to be unable to adjust to performing other work are allowed benefits, while those determined able to adjust are denied. For children, SSA determines at step 3 whether the impairment(s) meets, medically equals (is equivalent in severity to), or functionally equals (i.e., the impairment[s] results in functional limitations equivalent in severity to) the criteria in SSA’s Childhood Listings (SSA, n.d.a).5 If a child’s impairment or combination of impairments “does not meet or medically equal any listing, [SSA] will decide whether it results in limitations that functionally equal the listings.”6 Functional equivalence refers to functionally equaling the Listings: SSA’s technique for determining functional equivalence is a “whole child” approach that “accounts for all of the effects of a child’s impairments singly and in combination—the interactive and cumulative effects of the impairments—because it starts with a consideration of actual functioning in all settings” (SSA, 2009). Figures 1-2 and 1-3 depict SSA’s adjudication process for adults and children, respectively, in greater detail. Currently, there is no Listing for Long COVID, nor are there List- ings for similar chronic conditions, such as ME/CFS and fibromyalgia. However, disability can be established for these conditions with docu- mentation of a medically determinable impairment of sufficient dura- tion and severity of functional limitation. SSA provides formal guidance 4 The Adult Listings are available at http://www.ssa.gov/disability/professionals/bluebook/ AdultListings.htm. The Childhood Listings are available at http://www.ssa.gov/disability/ professionals/bluebook/ChildhoodListings.htm. Also see 20 Code of Federal Regulations (CFR) 404.1525, 404.1526, 416.925, and 416.926. 5 20 CFR 416.926; 20 CFR 416.926a. 6 20 CFR 416.926a. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 24 5/21/24 10:49 AM

INTRODUCTION 25 FIGURE 1-2  Social Security Administration’s adjudication process for adults. SOURCES: NASEM, 2020, p. 18, based on 20 CFR § 404.1520 and 416.920. for evaluating these conditions.7 In the guidance for providing medical evidence for claims involving Long COVID, SSA notes that the claimant should provide medical records that include “a thorough description of the individual’s medical history, with information on the diagnosis, onset, duration, and prognosis of the individual’s COVID-19; Long COVID; conditions that might be associated with, exacerbated by, or consistent with Long COVID; and any other conditions,” as well as treatments pre- scribed and the response to those treatments. SSA explicitly states that “a positive viral test result for SARS-CoV-2 is not necessary for a diagnosis of COVID-19 or Long COVID.” It considers all findings related to the claimant’s condition, including those that relate to another disorder or establish that the claimant has a co-occurring condition. In addition, 7 See Long COVID: A Guide for Health Professionals on Providing Medical Evidence for Social Security Disability Claims (SSA, 2023a), Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (SSA, 2018), and SSR 12-2p: Titles II and XVI: Evaluation of Fibromyalgia (SSA, 2012). PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 25 5/21/24 10:49 AM

26 LONG-TERM HEALTH EFFECTS OF COVID-19 FIGURE 1-3  Social Security Administration’s adjudication process for children. NOTE: Substantial Gainful Activity (SGA) is a term “used to describe a level of work activity and earnings. Work is “substantial” if it involves doing significant physical or mental activities or a combination of both.” More information on SGA can be found at https://www.ssa.gov/oact/cola/sga.html (accessed April 15, 2024). SOURCE: Wixon and Strand, 2013. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 26 5/21/24 10:49 AM

INTRODUCTION 27 it asks for a report of signs and symptoms consistent with Long COVID, including, but not limited to, • persistent or relapsing fatigue resulting in reduction or impairment of the ability to carry out daily or work-related activities; • post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort); • exercise intolerance; • respiratory difficulties, such as labored breathing or sudden breathlessness; • muscle or joint pain or tenderness; • weakness; • chest tightness, pain, or tenderness; • cognitive impairment(s) such as having difficulty with information processing, memory, or concentration and attention; • headaches of a new type, pattern, or severity; • changes in taste or smell; • gastrointestinal disturbances or discomfort, diarrhea, or constipation; • dizziness when standing up; • paresthesia (numbness, tingling, or pins-and-needles sensation); and/or • sleep problems (SSA, 2023a). Finally, SSA considers descriptions of functional limitations, including the following: • physical functions—the ability to walk, stand, sit, lift, push, pull, reach, carry, and handle; and/or • mental functions—the ability to understand, remember, and carry out simple instructions; the ability to use appropriate judgment; and the ability to respond appropriately to supervision, coworkers, and usual work situations, including changes in a routine work set- ting (SSA, 2023a). The committee notes that while this preliminary guidance may be helpful in determining whether a disability is related to Long COVID, it does not pro- vide sufficient guidance for assessing functional status or weighing severity. HEALTH EQUITY The burden of seeking care and finding adequate services for Long COVID is challenging and can impact the potential for recovery. Although Long COVID may manifest as impairments in body structures and physical PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 27 5/21/24 10:49 AM

28 LONG-TERM HEALTH EFFECTS OF COVID-19 and psychological functioning, it is not psychological in origin. Neverthe- less, patients with Long COVID may encounter skepticism about their symptoms when they present in medical settings, which discourages care seeking. This is particularly true for individuals disadvantaged by their social or economic status, geographic location, or environment, and can result in preventable disparities in the burden of disease and opportuni- ties to achieve optimal health (CDC, 2017). Disadvantaged groups include women, members of some racial and ethnic minorities, people with dis- abilities, LGBTQI+ (lesbian, gay, bisexual, transgender, queer, intersex, or other) individuals, people with limited English proficiency, and others. For example, one study found that Black and Hispanic Americans appear to experience more symptoms and health problems related to Long COVID compared with White people but are less likely to be diagnosed with the condition (Khullar et al., 2023). Individuals with Long COVID have increased health care utilization and financial burden, which may be exacerbated if they are unable to work to gain income. Members of disadvantaged groups, especially early in the pandemic, were more likely to contract SARS-CoV-2, more likely to be hospitalized with acute COVID-19, more likely to have adverse clinical outcomes, and less likely to be vaccinated, potentially increasing their risk of developing Long COVID. In addition, these groups are more likely to be uninsured or under- insured (Berger et al., 2021). Even for those with insurance coverage, some of the services that have been shown to improve function may not be covered by their benefits. Moreover, the availability of specialized Long COVID ser- vices is limited, and capacity does not match the demand for rehabilitation specialists (Berger et al., 2021). Limited transportation, distance from clinics, and the inability to take time away from work or school are known barriers to care (Berger et al., 2021). The availability issue is particularly problematic for individuals living in medically underserved areas. In addition, as a complex, chronic condition, Long COVID requires a multidisciplinary approach. Individuals disadvantaged by their social or economic status, geographic location, or environment may find navigating the health care system especially challenging without adequate social and financial resources. Inadequate access to interpreter services may also limit the ability of some with Long COVID to benefit fully from care. Information about COVID-19 is rapidly evolving and this dynamic nature of the science may contribute to some patient hesitancy regard- ing prophylactic and therapeutic management for acute infection or Long COVID. Low levels of health literacy may also place some individuals at increased risk for misinformation, which may prevent them from fully tak- ing advantage of health care resources to protect and improve their health. Low health literacy may also impact individual self-management of the symptoms and conditions associated with Long COVID. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 28 5/21/24 10:49 AM

INTRODUCTION 29 REPORT ORGANIZATION Chapter 2 describes established methods of diagnosing acute COVID- 19, as well as methods that may become available in the near future, and touches on how to determine whether a person has Long COVID in the absence of immunological confirmation (PCR/antibody test). Chapter 3 reviews common and disabling long-term health effects associated with COVID-19 and how their functional impacts can be assessed. Chapter 4 reviews the literature on the functional trajectories of those long-term health effects, and includes discussion of differences among hospitalized, nonhospitalized, post-ICU, and pediatric patients. It also comments on how rehabilitation affects functional outcomes. Chapter 5 summarizes research on the similarities between Long COVID and other chronic conditions, such as ME/CFS and fibromyalgia. Chapter 6 provides the committee’s overall conclusions based on the evidence presented throughout the report. REFERENCES AAPMR (American Academy of Physical Medicine and Rehabilitation). 2023. PASC consensus guidance. Rosemont, IL. https://www.aapmr.org/members-publications/ covid-19/pasc-guidance (accessed October 13, 2023). Adjaye-Gbewonyo, D., A. Vahratian, C. G. Perrine, and J. Bertolli. 2023. Long COVID in adults: United States, 2022. NCHS Data Brief (480):1–8. Antonelli, M., J. C. Pujol, T. D. Spector, S. Ourselin, and C. J. Steves. 2022. Risk of Long COVID associated with Delta versus Omicron variants of SARS-CoV-2. The Lancet 399(10343):2263–2264. ATS (American Thoracic Society). 2022. Long COVID patient fact sheet. New York: ATS. https://www.thoracic.org/patients/patient-resources/resources/long-covid.pdf (accessed October 13, 2023). Bajema, K. L., K. Berry, E. Streja, N. Rajeevan, Y. Li, P. Mutalik, L. Yan, F. Cunningham, D. M. Hynes, M. Rowneki, A. Bohnert, E. J. Boyko, T. J. Iwashyna, M. L. Maciejewski, T. F. Osborne, E. M. Viglianti, M. Aslan, G. D. Huang, and G. N. Ioannou. 2023. Effectiveness of COVID-19 treatment with nirmatrelvir-ritonavir or molnupiravir among U.S. veterans: Target trial emulation studies with one-month and six-month outcomes. Annuals of Internal Medicine 176(6):807–816. Behnood, S. A., R. Shafran, S. D. Bennett, A. X. D. Zhang, L. L. O’Mahoney, T. J. Stephenson, S. N. Ladhani, B. L. De Stavola, R. M. Viner, and O. V. Swann. 2022. Persistent symptoms following SARS-CoV-2 infection amongst children and young people: A meta-analysis of controlled and uncontrolled studies. Journal of Infection 84(2):158–170. Berger, Z., D. E. J. V. Altiery, S. A. Assoumou, and T. Greenhalgh. 2021. Long COVID and health inequities: The role of primary care. Milbank Quarterly 99(2):519–541. Callard, F., and E. Perego. 2021. How and why patients made Long COVID. Social Science & Medicine 268:113426. Catala, M., N. Mercade-Besora, R. Kolde, N. T. H. Trinh, E. Roel, E. Burn, T. Rathod-Mistry, K. Kostka, W. Y. Man, A. Delmestri, H. M. E. Nordeng, A. Uuskula, T. Duarte-Salles, D. Prieto-Alhambra, and A. M. Jodicke. 2024. The effectiveness of COVID-19 vaccines to prevent Long COVID symptoms: Staggered cohort study of data from the UK, Spain, and Estonia. The Lancet Respiratory Medicine 12(3):225–236 PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 29 5/21/24 10:49 AM

30 LONG-TERM HEALTH EFFECTS OF COVID-19 CDC (Centers for Disease Control and Prevention). 2017. Health disparities. https://www.cdc. gov/aging/disparities/index.htm (accessed January 11, 2024). CDC. 2023. Long COVID or post-COVID conditions. https://www.cdc.gov/coronavirus/ 2019-ncov/long-term-effects/ (accessed October 23, 2023). Congdon, S., Z. Narrowe, N. Yone, J. Gunn, Y. Deng, P. Nori, K. Cowman, M. Islam, S. Rikin, and J. Starrels. 2023. Nirmatrelvir/ritonavir and risk of Long COVID symptoms: A ret- rospective cohort study. Scientific Reports 13(1):19688. Davelaar, J., N. Jessurun, G. Schaap, C. Bode, and H. Vonkeman. 2023. The effect of cortico- steroids, antibiotics, and anticoagulants on the development of post-COVID-19 syndrome in COVID-19 hospitalized patients 6 months after discharge: A retrospective follow up study. Clinical and Experimental Medicine 23(8):4881–4888. Durstenfeld, M. S., M. J. Peluso, F. Lin, N. D. Peyser, C. Isasi, T. W. Carton, T. J. Henrich, S. G. Deeks, J. E. Olgin, M. J. Pletcher, A. L. Beatty, G. M. Marcus, and P. Y. Hsue. 2024. As- sociation of nirmatrelvir for acute SARS-CoV-2 infection with subsequent Long COVID symptoms in an observational cohort study. Journal of Medical Virology 96(1):e29333. EnSpark Consulting. 2023. What we heard: Engagement report for the National Academies of Sciences, Engineering, and Medicine Committee on Examining the Working Definitions for Long COVID. Washington, DC. FDA (Food and Drug Administration). 2021. FDA CERSI lecture on Long COVID: Risk factors, symptomology and patient reported outcomes captured through a novel digital platform by Dr. Erica Spatz & Dr. Kelli O’Laughlin. https://www.fda.gov/science-research/ advancing-regulatory-science/fda-cersi-lecture-long-covid-risk-factors-symptomology-and- patient-reported-outcomes-captured (accessed October 13, 2023). Fernandez-de-Las-Penas, C., K. I. Notarte, P. J. Peligro, J. V. Velasco, M. J. Ocampo, B. M. Henry, L. Arendt-Nielsen, J. Torres-Macho, and G. Plaza-Manzano. 2022. Long-COVID symptoms in individuals infected with different SARS-CoV-2 variants of concern: A sys- tematic review of the literature. Viruses 14(12):2629. Fung, K. W., F. Baye, S. H. Baik, and C. J. McDonald. 2023. Nirmatrelvir and molnupiravir and post-COVID-19 condition in older patients. JAMA Internal Medicine 183(12):1404–1406. Gluckman, T. J., N. M. Bhave, L. A. Allen, E. H. Chung, E. S. Spatz, E. Ammirati, A. L. Baggish, B. Bozkurt, W. K. Cornwell, K. G. Harmon, J. H. Kim, A. Lala, B. D. Levine, M. W. Martinez, O. Onuma, D. Phelan, V. O. Puntmann, S. Rajpal, P. R. Taub, and A. K. Verma. 2022. 2022 ACC expert consensus decision pathway on cardiovascular sequelae of COVID-19 in adults: Myocarditis and other myocardial involvement, post-acute se- quelae of SARS-CoV-2 infection, and return to play. Journal of the American College of Cardiology 79(17):1717–1756. Hedberg, P., and P. Nauclér. 2024. Post–COVID-19 condition after SARS-CoV-2 infections dur- ing the Omicron surge vs the Delta, Alpha, and wild type periods in Stockholm, Sweden. Journal of Infectious Diseases 229(1):133–136. HHS (Department of Health and Human Services). 2022. National research action plan on Long COVID. Washington, DC: Office of the Assistant Secretary for Health. https://www.covid. gov/assets/files/National-Research-Action-Plan-on-Long-COVID-08012022.pdf (accessed April 22, 2024). Humana. n.d. COVID-19: Long COVID resource guide. Louisville, KY: Humana. https://docushare-web.apps.external.pioneer.humana.com/Marketing/docushare- app?file=4676399 (accessed October 13, 2023). ICD10 Data. 2023. ICD-10-CM codes. https://www.icd10data.com/ICD10CM/Codes/ U00-U85/U00-U49/U09-/U09.9 (accessed October 13, 2023). IDSA (The Infectious Diseases Society of America). n.d. COVID-19 real time learning network. https://www.idsociety.org/covid-19-real-time-learning-network/ (accessed October 13, 2023). IOM (Institute of Medicine). 2011. Finding what works in healthcare. Washington, DC: The National Academies Press. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 30 5/21/24 10:49 AM

INTRODUCTION 31 IOM. 2015. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies Press. Khullar, D., Y. Zhang, C. Zang, Z. Xu, F. Wang, M. G. Weiner, T. W. Carton, R. L. Rothman, J. P. Block, and R. Kaushal. 2023. Racial/ethnic disparities in post-acute sequelae of SARS-CoV-2 infection in New York: An EHR-based cohort study from the RECOVER program. Journal of General Internal Medicine 38(5):1127–1136. Lundberg-Morris, L., S. Leach, Y. Xu, J. Martikainen, A. Santosa, M. Gisslen, H. Li, F. Nyberg, and M. Bygdell. 2023. COVID-19 vaccine effectiveness against post-COVID-19 condition among 589 722 individuals in Sweden: Population based cohort study. BMJ 383:e076990. Marra, A. R., T. Kobayashi, G. Y. Callado, I. Pardo, M. C. Gutfreund, M. K. Hsieh, V. Lin, M. Alsuhaibani, S. Hasegawa, J. Tholany, E. N. Perencevich, J. L. Salinas, M. B. Edmond, and L. V. Rizzo. 2023. The effectiveness of COVID-19 vaccine in the prevention of post-COVID conditions: A systematic literature review and meta-analysis of the latest research. Antimicrobial Stewardship and Healthcare Epidemiology 3(1):e168. NASEM (National Academies of Sciences, Engineering, and Medicine). 2019. Functional assess- ment for adults with disabilities. Edited by P. A. Volberding, C. M. Spicer, and J. L. Flaubert. Washington, DC: The National Academies Press. NASEM. 2020. Selected health conditions and likelihood of improvement with treatment. Washington, DC: The National Academies Press. NASEM. 2021. Childhood cancer and functional impacts across the care continuum. Edited by P. A. Volberding, C. M. Spicer, T. Cartaxo and L. Aiuppa. Washington, DC: The National Academies Press. NASEM. 2022a. Long COVID: Examining long-term health effects of COVID-19 and impli- cations for the Social Security Administration: Proceedings of a workshop. Edited by L. A. Denning and E. H. Forstag. Washington, DC: The National Academies Press. NASEM. 2022b. Selected heritable disorders of connective tissue and disability. Edited by P. A. Volberding, C. M. Spicer, T. Cartaxo, and R. A. Wedge. Washington, DC: The National Academies Press. NASEM. 2023a. Examining the working definition for Long COVID. https://www.national academies.org/our-work/examining-the-working-definition-for-long-covid (accessed April 22, 2024). NASEM. 2023b. Symposium on Long COVID: Examining the working definition. https:// www.nationalacademies.org/event/06-22-2023/examining-the-working-definition-for- long-covid-workshop (accessed April 22, 2024). NASEM. 2024. Toward a common research agenda in infection-associated chronic illnesses: Proceedings of a workshop. Washington, DC: The National Academies Press. NCHS (National Center for Health Statistics). 2024. Long COVID household pulse survey. Atlanta, GA: Centers for Disease Control and Prevention. https://www.cdc.gov/nchs/ covid19/pulse/long-covid.htm (accessed March 14, 2024). NICE (National Institute for Health and Care Excellence). 2020. COVID-19 rapid guideline: Managing the long-term effects of COVID-19. London, UK: NICE. Notarte, K. I., J. A. Catahay, J. V. Velasco, A. Pastrana, A. T. Ver, F. C. Pangilinan, P. J. Peligro, M. Casimiro, J. J. Guerrero, M. M. L. Gellaco, G. Lippi, B. M. Henry, and C. Fernandez- de-Las-Penas. 2022. Impact of COVID-19 vaccination on the risk of developing Long- COVID and on existing Long-COVID symptoms: A systematic review. EClinicalMedicine 53:101624. RECOVER (Researching COVID to Enhance Recovery). 2023. RECOVER: Researching COVID to enhance recovery. Bethesda, MD: National Institutes of Health. https://recovercovid.org/ (accessed October 13, 2023). Soriano, J. B., S. Murthy, J. C. Marshall, P. Relan, and J. V. Diaz. 2022. A clinical case defini- tion of post-COVID-19 condition by a delphi consensus. The Lancet Infectious Diseases 22(4):e102-e107. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 31 5/21/24 10:49 AM

32 LONG-TERM HEALTH EFFECTS OF COVID-19 SSA (Social Security Administration). 2009. SSR 09-1p: Title XVI: Determining childhood dis- ability under the functional equivalence rule—The “whole child” approach. https://www. ssa.gov/OP_Home/rulings/ssi/02/SSR2009-01-ssi-02.html#fn4 (accessed April 22, 2024). SSA. 2012. SSR 12-2p: Titles II and XVI: Evaluation of fibromyalgia. https://www.ssa.gov/ OP_Home/rulings/di/01/SSR2012-02-di-01.html (accessed April 22, 2024). SSA. 2018. Providing medical evidence for individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). https://www.ssa.gov/disability/professionals/documents/ 64-063.pdf (accessed on February 13, 2024). SSA. 2022. Evaluating cases with coronavirus disease 2019 (COVID-19). EM-21032 REV. https:// secure.ssa.gov/apps10/reference.nsf/links/08092022072836AM (accessed on February 13, 2024). SSA. 2023a. Long COVID: A guide for health professionals on providing medical evidence for social security disability claims. https://www.ssa.gov/disability/professionals/documents/ EN-64-128.pdf (accessed on February 13, 2024). SSA. 2023b. Monthly statistical snapshot, July 2023. https://www.ssa.gov/policy/docs/quickfacts/ stat_snapshot/ (accessed August 31, 2023). SSA. 2023c. Presentation to the Committee on the Long-Term Health Effects Stemming from COVID-19 and Implications for the Social Security Administration, January 26, 2023. Washington, DC. SSA. n.d.a. Disability evaluation under Social Security—Listing of impairments—Childhood list- ings (Part B). https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm (accessed October 12, 2023). SSA. n.d.b. Selected data from Social Security’s disability program. https://www.ssa.gov/oact/ STATS/dibStat.html (accessed January 31, 2024). VA (Veteran’s Administration). n.d. Long COVID. https://www.veteranshealthlibrary.va.gov/ 142,41528_VA (accessed October 13, 2023). Vahratian, A., D. Adjaye-Gbewonyo, J.-M. S. Lin, and S. Saydah. 2023. Long COVID in children: United States, 2022. NCHS Data Brief 479:1-6. Watanabe, A., M. Iwagami, J. Yasuhara, H. Takagi, and T. Kuno. 2023. Protective effect of COVID-19 vaccination against Long COVID syndrome: A systematic review and meta- analysis. Vaccine 41(11):1783-1790. WHO (World Health Organization). 2001. International classification of functioning, disability and health. Geneva, Switzerland: WHO. WHO. 2023. International statistical classification of diseases and related health problems, 11th revision. Geneva, Switzerland: WHO. Wikipedia. 2023. Long COVID. https://en.wikipedia.org/wiki/Long_COVID (accessed October 13, 2023). Wixon, B., and A. Strand. 2013. Identifying SSA’s sequential disability determination steps using administrative data. Research and Statistics Note No. 2013-01. Social Security Adminis- tration, Office of Retirement and Disability Policy. http://www.ssa.gov/policy/docs/rsnotes/ rsn2013-01.html (accessed January 29, 2024). Xie, Y., T. Choi, and Z. Al-Aly. 2023. Association of treatment with nirmatrelvir and the risk of post-COVID-19 condition. JAMA Internal Medicine 183(6):554–564. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 32 5/21/24 10:49 AM

INTRODUCTION 33 ANNEX TABLE 1-1  Terminology and Definitions for “Long COVID” Source Term Definition Reference Patients and Long COVID Can be broadly defined as signs, (Callard people with symptoms, and sequelae that and Perego, lived experience; continue or develop after acute 2021) patient-researchers COVID-19 or SARS-CoV-2 infection for any period of time; are generally multisystemic; might present with a relapsing–remitting pattern and a progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection Centers for Disease Post-COVID Umbrella term for the wide range (CDC, 2023) Control and 19 conditions of physical and mental health Prevention (CDC) (plural) consequences experienced by some patients that are present four or more weeks after SARS-CoV-2 infection, including by patients who had initial mild or asymptomatic acute infection; equivalent to the lay term, “Long COVID” Department of Post-COVID Post-COVID conditions are (VA, n.d.) Veterans Affairs Conditions symptoms that last or start weeks (VA) or months after a person was infected with the SARS-CoV-2 virus. This is the virus that causes COVID-19. This can happen even if you didn’t know you had the virus. You may hear these conditions called long COVID, post-acute COVID, chronic COVID, or other terms. The symptoms can include tiredness, headaches, loss of taste and smell, trouble breathing, and dizziness National Institutes Post-acute Ongoing, relapsing, or new (RECOVER, of Health (NIH) Sequelae of symptoms, or other health effects 2023) SARS CoV-2 occurring after the acute phase of infection SARS-CoV-2 infection (i.e., present four or more weeks after the acute infection). The definition will be revised in an iterative manner based on existing and new data, medical literature, and feedback from the scientific community continued PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 33 5/21/24 10:49 AM

34 LONG-TERM HEALTH EFFECTS OF COVID-19 ANNEX TABLE 1-1  Continued Source Term Definition Reference Food and Drug Post-COVID While most people with COVID-19 (FDA, 2021) Administration conditions have resolution of their symptoms (FDA) (plural) within weeks of their illness, some people experience post-COVID conditions. Post-COVID conditions are new, returning, or ongoing health problems people can experience four or more weeks after initial infection with the SARS-CoV-2 virus. These conditions have also been termed long COVID, long- haul COVID, postacute sequelae of COVID-19, long-term effects of COVID, or chronic COVID. Post-COVID conditions have been observed in people with mild to severe COVID-19 infection, and can present with localized and systemic symptoms impacting nearly all organ systems World Health Post- Post-COVID-19 condition occurs (Soriano Organization COVID-19 in individuals with a history of et al., 2022) (WHO) Condition probable or confirmed SARSCoV-2 (singular) infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis; common symptoms include fatigue, shortness of breath, and cognitive dysfunction, and generally have an impact on everyday functioning; symptoms might be new onset after initial recovery from an acute COVID-19 episode or persist from the initial illness; symptoms might also fluctuate or relapse over time; a separate definition might be applicable for children; recognize “Long COVID” Broader Research Persistent Persistent signs and symptoms that (Behnood Community symptoms or continue or develop after acute et al., 2022) COVID-19 COVID-19 for any period of time consequences PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 34 5/21/24 10:49 AM

INTRODUCTION 35 ANNEX TABLE 1-1  Continued Source Term Definition Reference American Academy Post-acute Post-Acute Sequelae of SARS-CoV-2 (AAPMR, of Physical sequelae of infection (PASC) or Long COVID is 2023) Medicine and SARS CoV-2 a condition that occurs in individuals Rehabilitation infection who have had COVID-19 and report (equates it at least one persistent symptom with Long after acute illness. Long COVID COVID) encompasses a constellation of varied and ongoing symptoms – even in the same patient across time – and may include neurological challenges, cognitive symptoms such as brain fog, cardiovascular and respiratory issues, fatigue, pain and mobility issues, among others. American College Post-acute PASC encompasses a constellation (Gluckman of Cardiology sequelae of of symptoms that emerge or persist et al., 2022) SARS-CoV-2 weeks to months after recovery Infection from COVID-19 [referencing CDC, WHO]. Although evidence guiding the care of these patients continues to evolve, there is a need to develop common taxonomies and approaches to care that can be updated iteratively as new data become available. American Thoracic Long COVID The term that is often used to describe (ATS, 2022) Society these persistent symptoms. You are considered to have ‘Long COVID’ when you are still having symptoms at least 4 weeks after the initial infection. Long COVID may also be referred to by other names such as post-COVID conditions, PASC (post-acute sequelae of SARS-CoV-2 infection) or long-haul COVID. Humana Military Long COVID While most people with COVID-19 (Humana, get better within weeks, some n.d.) continue to have symptoms—or develop new ones—after their initial recovery. The technical term for this is post-acute sequelae of SARS-CoV-2 infection (PASC), or simply “long COVID.” People with long COVID are often called “long haulers.” A person of any age who has had COVID-19 can later develop a post-virus condition. continued PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 35 5/21/24 10:49 AM

36 LONG-TERM HEALTH EFFECTS OF COVID-19 ANNEX TABLE 1-1  Continued Source Term Definition Reference Infectious Disease Post- References other definitions, Long (IDSA, n.d.) Society of America COVID19 COVID, CDC, and WHO Conditions (plural) Wikipedia Long COVID Long COVID is a condition (Wikipedia, characterized by long-term 2023) consequences persisting or appearing after the typical convalescence period of COVID-19. It is also known as post-COVID-19 syndrome, postCOVID-19 condition, post-acute sequelae of SARS-CoV-2 infection (PASC), or chronic COVID syndrome (CCS). Long COVID can affect nearly every organ system, with sequelae including respiratory system disorders, nervous system and neurocognitive disorders, mental health disorders, metabolic disorders, cardiovascular disorders, gastrointestinal disorders, musculoskeletal pain, and anemia. A wide range of symptoms are commonly reported, including fatigue, malaise, headaches, shortness of breath, anosmia (loss of smell), parosmia (distorted smell), muscle weakness, low fever, and cognitive dysfunction. International U09.9 No definition is given, but the (ICD 10 Classification of Post-COVID following are noted: Data, 2023) Diseases (ICD)-10- condition, • This code enables establishment CM code unspecified of a link with COVID-19. • This code is not to be used in cases that are still presenting with active COVID-19. However, an exception is made in cases of reinfection with COVID-19, occurring with a condition related to prior COVID-19. •  Post-acute sequelae of COVID-19 National Institute Ongoing Signs and symptoms of COVID-19 (NICE, 2020) for Health and symptomatic from 4 weeks up to 12 weeks Care Excellence COVID-19 (NICE)* PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 36 5/21/24 10:49 AM

INTRODUCTION 37 ANNEX TABLE 1-1  Continued Source Term Definition Reference National Institute Post- Signs and symptoms that develop (NICE, for Health and COVID19 during or after an infection 2020) Care Excellence syndrome consistent with COVID-19, (NICE)** continue for more than 12 weeks and are not explained by an alternative diagnosis; it usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body; post-COVID-19 syndrome might be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed NOTE: Adapted from the table titled, “Commonly used terminology in the research of COVID-19 sequelae” in Munblit, D., M. O’Hara, and A. Akrami, et al. 2022. Long COVID: Aiming for a consensus. The Lancet Respiratory Medicine S2213-2600(22):135-137. https://www.thelancet. com/action/showPdf?pii=S2213-2600%2822%2900135-7 (accessed June 21, 2022). *United Kingdom National Institute for Health and Care Excellence (NICE) **NICE also states that: “In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).” SOURCE: HHS, 2022, Appendix C. PREPUBLICATION COPY—Uncorrected Proofs A02506-Long-Term_Health_Effects_of_COVID-19_Ch01.indd 37 5/21/24 10:49 AM

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Since the onset of the coronavirus disease 2019 (COVID-19) pandemic in early 2020, many individuals infected with the virus that causes COVID-19, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), have continued to experience lingering symptoms for months or even years following infection. Some symptoms can affect a person's ability to work or attend school for an extended period of time. Consequently, in 2022, the Social Security Administration requested that the National Academies convene a committee of relevant experts to investigate and provide an overview of the current status of diagnosis, treatment, and prognosis of long-term health effects related to Long COVID. This report presents the committee conclusions.

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