Post by Nadica (She/Her) on Aug 2, 2024 2:39:47 GMT
Long Covid Defined - Published July 31, 2024
The Covid-19 pandemic has been perceived mainly as a dangerous acute outbreak of infection that killed more than a million people in the United States and 7 million worldwide. However, in the pandemic’s wake, Covid-19 has left many millions more with a variety of chronic, systemic, and often disabling conditions collectively known as “long Covid.” In the United States alone, survey data indicate that approximately 7% of adults and more than 1% of children — numbering 15 to 20 million Americans and more than 60 million globally — have had long Covid.
Because of the novelty and diverse expression of this condition, a variety of terms and definitions have been advanced for long Covid, although none have gained wide acceptance and support from patients, clinicians, researchers, and government agencies. In recognition of the shortcomings of the existing definitions, the Administration for Strategic Preparedness and Response and the Office of the Assistant Secretary of Health in the Department of Health and Human Services tasked the National Academies of Sciences, Engineering, and Medicine (NASEM) with developing an improved definition for long Covid that would take into account the needs of patients as well as the views and understanding of a range of experts.
Here, we describe the process and rationale for the resulting 2024 NASEM long Covid definition5 As committee members and lead staff who produced the definition, we can attest that the process inspired discovery and deepening appreciation for the reality and severity of this condition. As a clinician, one of us (Dr. Ely) can admit to early skepticism. Having worked with severely ill patients in the intensive care unit and researched their survivorship trajectories for 25 years, we found that the myriad signs and symptoms reported by patients with long Covid seemed to mirror those described by patients after critical illness. At first, it appeared plausible to attribute these numerous adverse outcomes — including cognitive impairment, neuromuscular disease, depression, and severe fatigue — to the acquired chronic disease state called the post intensive care syndrome (PICS). This hypothesis faltered when symptoms similar to PICS began cropping up in tens of thousands of patients from the first wave of the pandemic, most of whom had never been admitted to a hospital during their acute SARS-CoV-2 infection and reported only mild initial symptoms. Patient advocacy groups marshalled social media and quickly established themselves as citizen scientists, coining the term long Covid.
Patients with long Covid join the ranks of millions before them with chronic conditions in which associations with infections have been found (e.g., myalgic encephalomyelitis–chronic fatigue syndrome, post-treatment Lyme disease, and multiple sclerosis, among others). These conditions had been identified during the preceding decades without a pandemic to garner concerted attention to their plight. Mindful of these patients, the committee set out to develop a definition for long Covid that offers legitimacy and a path toward therapeutic answers through future clinical trials.
The Covid-19 pandemic has been perceived mainly as a dangerous acute outbreak of infection that killed more than a million people in the United States and 7 million worldwide. However, in the pandemic’s wake, Covid-19 has left many millions more with a variety of chronic, systemic, and often disabling conditions collectively known as “long Covid.” In the United States alone, survey data indicate that approximately 7% of adults and more than 1% of children — numbering 15 to 20 million Americans and more than 60 million globally — have had long Covid.
Because of the novelty and diverse expression of this condition, a variety of terms and definitions have been advanced for long Covid, although none have gained wide acceptance and support from patients, clinicians, researchers, and government agencies. In recognition of the shortcomings of the existing definitions, the Administration for Strategic Preparedness and Response and the Office of the Assistant Secretary of Health in the Department of Health and Human Services tasked the National Academies of Sciences, Engineering, and Medicine (NASEM) with developing an improved definition for long Covid that would take into account the needs of patients as well as the views and understanding of a range of experts.
Here, we describe the process and rationale for the resulting 2024 NASEM long Covid definition5 As committee members and lead staff who produced the definition, we can attest that the process inspired discovery and deepening appreciation for the reality and severity of this condition. As a clinician, one of us (Dr. Ely) can admit to early skepticism. Having worked with severely ill patients in the intensive care unit and researched their survivorship trajectories for 25 years, we found that the myriad signs and symptoms reported by patients with long Covid seemed to mirror those described by patients after critical illness. At first, it appeared plausible to attribute these numerous adverse outcomes — including cognitive impairment, neuromuscular disease, depression, and severe fatigue — to the acquired chronic disease state called the post intensive care syndrome (PICS). This hypothesis faltered when symptoms similar to PICS began cropping up in tens of thousands of patients from the first wave of the pandemic, most of whom had never been admitted to a hospital during their acute SARS-CoV-2 infection and reported only mild initial symptoms. Patient advocacy groups marshalled social media and quickly established themselves as citizen scientists, coining the term long Covid.
Patients with long Covid join the ranks of millions before them with chronic conditions in which associations with infections have been found (e.g., myalgic encephalomyelitis–chronic fatigue syndrome, post-treatment Lyme disease, and multiple sclerosis, among others). These conditions had been identified during the preceding decades without a pandemic to garner concerted attention to their plight. Mindful of these patients, the committee set out to develop a definition for long Covid that offers legitimacy and a path toward therapeutic answers through future clinical trials.