National Academy of Medicine proposes common definition of long COVID

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The nation needs a new, standardized definition of long COVID, the lingering after effects plaguing some patients who had COVID-19.

The National Academies of Sciences, Engineering, and Medicine (NASEM) has published a report listing the characteristics of “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.”

The condition has wide-ranging medical, social and economic consequences worldwide – but no common definition that everyone agrees upon. That needs to change, because lack of a mutually understood definition presents challenges for patients, physicians and other clinicians, public health practitioners, researchers and policymakers, according to NASEM.

“The lack of a consistent definition for Long COVID has hampered research and delayed diagnosis and care for patients,” NASEM Authoring Committee Chair Harvey Fineberg said in a news release. Fineberg is president of the Gordon and Betty Moore Foundation. “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 NASEM report says the new Long COVID definition can be applied to many purposes:

• 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
• Public awareness and education, especially for patients and their families and caregivers

What is it?

The NASEM report stated: “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.”

A full list of possible signs, symptoms and diagnosable conditions would have hundreds of entries, the report said. Long COVID can affect any organ system and there may be single or multiple symptoms, ranging from shortness of breath and coughing, to problems with taste or smell, to constipation or diarrhea. Symptoms should be present at least three months, but the definition committee did not include a maximum latency period.

“Long COVID occurs after COVID-19 infection but does not require laboratory confirmation or other proof of the initial infection,” the NASEM report said. “The definition emphasizes that Long COVID can follow infections of any severity, including asymptomatic infections, whether they were initially recognized or not.”

Some patients will have severe effects that limit activity. “This can profoundly affect patients’ and caregivers’ lives and is an important feature of Long COVID,” according to NASEM.

Creating a definition

The committee engaged more than 1,300 participants, with an eye on interdisciplinary dialogue and perspectives of patients, according to NASEM.

The definition and report stem from a request by the Administration for Strategic Preparedness (ASPR) and Response and the Office of the Assistant Secretary for Health (OASH). There are 14 federal agencies that make up OASH’s Office of Long COVID Research and Practice, with the Long COVID Coordination Council, and NASEM recommends they lead wide dissemination and implementation of the new definition. OASH also should reexamine the definition in no more than three years, or if new evidence emerges about the disease.

“Long COVID is a devastatingly persistent result of the COVID-19 pandemic that the medical community has yet to fully address,” NASEM President Victor J. Dzau, MD, said in the news release. “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.”