Long Covid Finally Gets A Universal Definition

Arthur T Knackerbracket has processed the following story:

Long COVID affects millions of Americans of almost all ages, but there has been no standard definition for the condition until now.

The U.S. National Academies of Sciences, Engineering and Medicine announced the definition for long COVID June 11.

Previous definitions of long COVID have been all over the map, each with its own set of accepted symptoms, timelines and requirements for proof of infection (SN: 7/29/22).

That lack of standardization left many patients in the lurch without clear ability to be recognized for the condition that they had, with difficulty explaining to family and even to their caregivers," says Harvey Fineberg, a public health expert who chaired the committee that drafted the definition. We heard from literally hundreds of people experiencing long COVID about the challenges that they had in being heard, in gaining access to care and obtaining the care they needed."

More than 1,300 people contributed to the definition. The committee decided to adopt the patients' own term long COVID" instead of more medical terms such as post-acute sequelae of COVID-19" that have also been used to describe the long-term condition.

Adoption of the name the patients advocated for gives validation to everyone with the condition who has been struggling, sometimes for years, to have their experience acknowledged, says Daria Oller, a physical therapist in New Jersey who developed long COVID in 2020. Now, people are trying to not use the term long COVID, and all of us, patients from the first wave, are fighting. We were ignored. That's ours. We named it."

The committee chose to go with the name because it's simple, familiar and easy to communicate, Fineberg said during a webinar introducing the definition.

No one knows exactly how many people have long COVID, but a recent survey found that more than 17 percent of adults in the United States have experienced the condition. While the National Academies don't have regulatory or legal power to enforce adoption of the definition, the respected body of scientific experts' recommendations are often used in making regulatory decisions, determining medical and scientific policies and crafting laws.

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