A group of experts working with the National Academies of Sciences, Engineering, and Medicine (NASEM) have proposed a new definition for long COVID, in the hopes of bringing long-awaited clarity
The previous lack of consensus when it comes to defining long COVID can be problematic in many ways, but particularly for those who experience the condition. The Centers for Disease Control and Prevention (CDC) recently estimated that 17.8 percent of adults in the US had experienced long COVID.
Without a clear definition, those people can encounter skepticism and difficulty accessing the treatment they need.
In the hopes of bringing the clarity required to resolve this problem, the committee authoring the report worked with over 1,300 participants with a variety of perspectives, including patients, caregivers, and advocacy groups, but also health care professionals, researchers, and those involved in health industry businesses.
The definition they came up with is as follows: “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.”
It was also concluded that the three-month period proposed doesn’t have to be immediately following infection; the authors acknowledged that long COVID’s onset may well occur weeks or even months after someone appears to have recovered.
Importantly, the definition doesn’t list any specific symptoms that are required for a diagnosis, nor does it list any that would definitively rule it out. As such, there’s no attempt to list all of the possible symptoms of long COVID, though it does mention that studies have estimated there to be over 200, affecting multiple different organs.
Some of these include symptoms we might associate with an initial COVID infection, such as coughing, shortness of breath, and more recently with the appearance of new variants, digestive issues. Other examples given that are often reported by people with long COVID are persistent fatigue, memory changes, and problems with taste or smell.
Under normal circumstances, NASEM’s conclusions on a topic aim to be final. However, because it’s such a new condition, what we know about long COVID is changing all the time. As a result, the authors actively encourage that the definition be reviewed.
“Words have a way of evolving from their original meaning: nice originally meant silly or foolish, and silly originally referred to things worthy or blessed,” they write. “While Long COVID is unlikely to endure such an extreme lexical conversion, its meaning can and should evolve to match the state of knowledge.”
Regardless, it’s hoped the definition in its current form will bring people with long COVID much-needed recognition and support.
“The lack of a consistent definition for Long COVID has hampered research and delayed diagnosis and care for patients,” said Harvey Fineberg, chair of the report’s authoring committee, in a statement.
“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 can be accessed here.
