NASEM releases new definition of long COVID to offer clarity and direction

A new National Academies of Sciences, Engineering, and Medicine report says the federal government, state and local authorities, clinicians, medical societies and organizations, public health practitioners, employers, educators, and others should adopt a new definition for “Long COVID”- that it is an infection-associated chronic condition that occurs after COVID-19 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.

Long COVID has profound medical, social, and economic consequences worldwide. While several working definitions currently exist, no common definition for Long COVID has been agreed upon. The lack of a consensus definition presents challenges for patients, clinicians, public health practitioners, researchers, and policymakers. For patients, varying presentations of the disease and competing definitions can lead to difficulties accessing medical care or obtaining support, skepticism and dismissal of their experiences, delayed or denied treatment, and social stigma.

Recognizing the need for broad input and an improved definition, the Administration for Strategic Preparedness and Response (ASPR) and the Office of the Assistant Secretary for Health (OASH) asked the National Academies to take up the issue of defining Long COVID. The committee that wrote the report engaged more than 1,300 participants in its activities, with a focus on interdisciplinary dialogue and the patient perspective.

The report says the new Long COVID definition can be applied to many purposes-including clinical care and diagnosis; eligibility for health services, insurance coverage, disability benefits, and school or workplace accommodations; public health; social services; policymaking; epidemiology and surveillance; private and public research; and public awareness and education, especially for patients and their families and caregivers.

“The lack of a consistent definition for Long COVID has hampered research and delayed diagnosis and care for patients,” said Harvey Fineberg, president of the Gordon and Betty Moore Foundation, and chair of the authoring committee. “Our committee hopes this single definition, crafted with input from across research and patient communities, will help to educate the public about this widespread and highly consequential disease state.”

The report recommends OASH’s Office of Long COVID Research and Practice and the Long COVID Coordination Council, comprised of 14 federal agencies, lead wide dissemination and implementation of the new definition. OASH should reexamine and update the definition for Long COVID in no more than three years, or when triggered by the emergence of new evidence-such as improved testing or changes in Long COVID demographic patterns or in special populations.

“Long COVID is a devastatingly persistent result of the COVID-19 pandemic that the medical community has yet to fully address,” said Victor J. Dzau, president of the National Academy of Medicine. “Serving this patient population through better-coordinated care, more definitive diagnoses, and more efficient and streamlined research are important next steps for addressing its impact.”

Long COVID (LC) is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.

LC manifests in multiple ways. A complete enumeration of possible signs, symptoms, and diagnosable conditions of LC would have hundreds of entries. Any organ system can be involved, and LC patients can present with:

The definition says symptoms should be present for at least three months, whether consistent or relapsing and remitting, for a Long COVID diagnosis to be made. Because there is still ambiguity regarding the relationship between the timing of COVID-19 infection relative to Long COVID onset, the committee chose not to include a maximum latency period.

The definition does not list any symptoms or conditions as being required or any as being exclusionary. While some examples of specific symptoms are included in the definition, they are not meant to be exhaustive or to dismiss the significance of other symptoms or conditions. A complete enumeration of signs, symptoms, and diagnosable conditions of Long COVID would have more than 200 entries.

The definition emphasizes that some individuals with Long COVID are severely affected and can have a variety of activity limitations. This can profoundly affect patients’ and caregivers’ lives and is an important feature of Long COVID.

The report recognizes that socioeconomic factors, inequality, discrimination (based on race and gender, among others), bias, and stigma affect whether patients can receive a diagnosis and benefit from Long COVID-targeted health care or services. These factors include but are not limited to access to COVID-19 testing during acute illness, access to evaluation for possible Long COVID, willingness of physicians to diagnose a particular patient, access to insurance benefits, and patients’ fears of stigmatization that could result from having a Long COVID diagnosis.