A Long COVID Definition A Chronic, Systemic Disease State with Profound Consequences (2024) / Chapter Skim
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1 Introduction
1 Introduction
Pages 15-30
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This complex and lingering medical condition has exposed shortcomings in public health messaging and education, clinical care, research, and social support services. It has also illustrated the need to better understand infection-associated chronic conditions (IACCs)
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. Long COVID as an underlying or contributing cause of death is likely to be underestimated in the references 1 Limitations of the Household Pulse Survey: only accounted for people 18 and above, based on self-report, only counts COVID-19 cases if participant received a positive test or was told by a health care provider that they had COVID-19, and does not include people who have a worsening of existing conditions following SARS-CoV-2 infection.
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. For patients, challenges associated with the lack of a clear, consistent definition of Long COVID and the diversity of the range of clinical presentations and poor understanding of Long COVID can lead to: difficulties accessing medical care; skepticism and dismissal of patients' experiences by medical professionals, peers (Au et al., 2022)
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Common symptoms include, but are not limited to, fatigue, shortness of breath, and cognitive dysfunction and generally have an impact on everyday functioning. Symptoms might be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness.
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. Global List of Long COVID Definitions In addition to the above definitions, many organizations and governments across the globe have developed definitions for Long COVID and related terms.
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In the 2-month scoping phase, the standing committee held three information-gathering meetings to discuss the key issues and identify the areas of expertise and stakeholders to engage in this effort. In Phase I, the committee, along with National Academies staff and a team of consultants, engaged patients and individuals across multiple sectors to solicit input from a wide range of interested and affected parties through a series of focus group discussions and an online questionnaire; 3 To learn more about the Standing Committee on Emerging Infectious Diseases and 21st Century Health Threats, please visit https://www.nationalacademies.org/our-work/standingcommittee-on-emerging-infectious-diseases-and-21st-century-health-threats.
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The workshop series will conclude with a 2-day workshop discussing potential considerations for refined Long COVID definitions, terminology, and harmonizing efforts for patient engagement, clinical care, research, surveillance, across USG and relevant stakeholders. The committee will define the specific topics to be addressed, develop the workshop agen das, and select and invite speakers and other participants.
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22 FIGURE 1: Process map for the multi-phase activity of examining the working definition for Long COVID Standing Committee on Emerging Infectious Diseases Ad Hoc Committee and 21st Century Health Threats on Examining the Working Definition for Long COVID Series of three • Committee meetings and information gathering sessions information gathering • Evidence building Report with refined Scoping and scoping meetings to Phase I Phase II Long COVID definition Phase formulate the problem • Stakeholder engagement and recommendations and plan stakeholder • Culminating hybrid workshop engagement January 2023 February 2023 March 2023 April 2023 May 2023 June 2023 October 2023 – June 2024 FIGURE 1 Process map for the multi-phase activity of examining the working definition for Long COVID.
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and the key findings are published in a publicly available report titled What We Heard: Engagement Report on the Working Definition for Long COVID.4 Engagement activities were publicly promoted through various mechanisms and networks, and the committee made focused efforts to identify an equitable list of participants that covered the full spectrum of impacted and interested people, geographies, and demographics. Demographic data was only formally collected for questionnaire respondents, and of those respondents who answered the demographic questions, they were overwhelmingly white, female, highly educated, living in urban or mostly urban areas of the United States, and had a total household income of at least $100,000.
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; Long COVID patients, organizations, and groups; medical institutions and health care providers; public health agencies and practitioners; academic institutions, researchers, and educators; payers and health care business professionals; employers and human resource professionals; and international agencies. This report includes guidance for clinicians, researchers, and public health practitioners in applying the proposed definition.
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To others, including many experiencing Long COVID, "condition" or "medical condition" connotes a more lasting and serious unhealthy state. In addition to using "disease state" when referring to Long COVID, the committee uses the terms "condition," "medical condition," or "chronic condition." Similarly, when referring to the unhealthy state related to any prior infection, the committee uses the term "infection-associated chronic condition." The term "infection-associated chronic condition" (IACC)
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. Although there are variations linked to the particular infectious agent, many of these conditions share common symptoms such as fatigue, exertion intolerance, cognitive impairment, musculoskeletal pain, dysautonomia, and sleep problems, which can appear in a relapsing/ remitting pattern and can resemble or overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
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The next section summarizes evidence supporting key elements and features of the definition (3) , including such aspects as balancing errors of inclusion and exclusion, attribution to infection, onset and duration, symptoms and clinical expression, functional impact, considerations of equity, alternative diagnoses, biomarkers, and risk factors.
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• single or multiple diagnosable conditions, such as interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, anxiety, migraine, stroke, blood clots, chronic kidney disease, postural orthostatic tachycar dia syndrome (POTS) and other forms of dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
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No or unrecognized) Sleep Disturbance Postural orthostatic Myalgic biomarker currently available may be Sleep Disturbance tachycardia encephalomyelitis/ demonstrates conclusively the asymptomatic, syndrome (POTS)
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