Expert Committee Proposes Universal Long COVID Definition

Expert Committee Proposes Universal Long COVID Definition

Long COVID has been recognized since 2020 and affects an estimated 17,000 people in the U.S. Yet there’s no comprehensive and widely adopted definition of the condition, which hampers diagnosis and treatment.

Now, a new report released June 11 by the National Academies of Sciences, Engineering, and Medicine (NASEM) proposes a “consensus” definition of long COVID. The definition was developed by a committee of medical specialists, researchers, and patients who incorporated input from more than 1,300 participants.

“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,” Harvey Fineberg, MD, PhD, chair of the report’s authoring committee and president of the Gordon and Betty Moore Foundation, said in a news release. 

Here’s what you need to know about why a universal definition is necessary, what the new definition entails, and how it could impact people with long COVID.

Jacob Wackerhausen / Getty Images

The report noted that “several working definitions” of long COVID exist, but no standard definition has “yet been agreed upon.” Furthermore, many definitions have been brief or vague to accommodate the rapid pace of ongoing research. 

This ambiguity has created challenges for policymakers, researchers, and medical professionals. It has also had consequences for patients, including difficulty accessing care or feeling dismissed by medical professionals and others when symptoms don’t align with the public perception of long COVID. 

Recognizing these issues, the Department of Health and Human Services (HHS) tasked the NASEM, an independent adviser to the nation on science and medicine, with creating a comprehensive definition of long COVID.

According to the NASEM report, long COVID can affect anyone and:

  • Is associated with a COVID infection 
  • Sticks around for at least three months (either continuously or intermittently)
  • Affects one or more organ systems

Beyond these criteria, the report highlighted some notable features of the condition. 

It’s not necessary for a person to have previously tested positive for COVID or have antibodies to receive a diagnosis, the report said. The infection that may have triggered long COVID could have been asymptomatic, mild, or severe.

Medical professionals can diagnose long COVID “on clinical grounds,” the definition continued; no lab test can currently confirm or deny a long COVID diagnosis.

Furthermore, long COVID can range from mild to severe and may improve after a few months or persist for years.

Long COVID can have more than 200 symptoms, the committee said. Of those, the most common are:

  • Shortness of breath
  • Persistent fatigue
  • Post-exertional malaise
  • Difficulty concentrating
  • Memory changes
  • Recurring headache
  • Lightheadedness
  • Fast heart rate
  • Sleep disturbances
  • Problems with taste and/or smell
  • Cough
  • Bloating 
  • Constipation
  • Diarrhea

Someone with long COVID may have several symptoms or only one, and the condition can affect a person’s ability to function daily.

In addition to individual symptoms, the report recognized that people living with long COVID may also develop one or more diagnosable conditions, such as heart disease, cognitive impairment, and fibromyalgia. If someone has a chronic condition before a SARS-CoV-2 infection, long COVID can make it worse. 

The report stipulates that the definition must be revised within three years or if there are new research findings. 

Doctors who treat patients with long COVID had largely positive reactions to the proposed definition. 

Mohanakrishnan Sathyamoorthy, MD, chair of internal medicine at Burnett School of Medicine at Texas Christian University, who researches long COVID treatments, called the definition “excellent and comprehensive” and noted that “[it] will lead to a timelier diagnosis” of the condition. “The simplicity of grading—mild, moderate, or severe—is very helpful,” he told Health

Breaking the condition down into different subtypes would make the definition even more helpful, he added. “Based on the organ system affected, we need specific diagnostic criteria in well-defined terms,” he explained.

Eric Wisotzky, MD, medical director for the MedStar Health COVID Recovery Program, commended the NASEM definition for “[including] both common and less common” symptoms of Long COVID.

 “I like that it truly outlines many of the different scenarios in which we see long COVID, including a delay in symptom onset, waxing or waning symptoms, and symptoms after very mild COVID illness,” he told Health

Although Thomas Gut, DO, associate chair of medicine at Staten Island University Hospital, told Health that he believes the definition is “[going] in the right direction,” he sees its broad scope and “very liberal interpretation of symptoms” as problematic.

“Allowing for patients that never had symptoms of primary COVID, with or without antigen testing, to potentially attribute their symptoms to long COVID does a disservice to getting any accurate diagnosis for some patients,” he said.

Wisotzky, on the other hand, pointed out that it’s “absolutely true” that people who never had initial COVID symptoms or a positive test can end up with long Covid.

While the Centers for Disease Control and Prevention has already updated its definition of long COVID to reflect the NASEM version, HHS has indicated that it “is currently reviewing NASEM’s recommendations and proposed definition.”

If the NASEM definition is accepted as the standard, one next step will include “developing simple scoring algorithms” to help make diagnosing long COVID less of a challenge for clinicians, Sathyamoorthy said. 

As for patients, having an established and accepted definition of the condition may help legitimize their experience, Lily Chu, MD, vice president of the International Association for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, said during the report release webinar. One-third of Americans are still unsure about what long COVID even is, she added.

“During our engagement activities, the public told us that the number one way they would use any long COVID definition would be to explain their condition to other people,” she said. “I believe that our inclusive definition will help both these groups.”

“Hopefully,” she added, “family members, friends, educational institutions, and employers will understand patients’ limitations better.”

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