UT Health San Antonio faculty member helps create universal long COVID definition

A report released June 11 by the National Academies of Sciences, Engineering and Medicine (NASEM) provides a working definition of long COVID.

Monica Verduzco-Gutierrez, MD, professor and chair of the Department of Rehabilitation Medicine in the Joe R. and Teresa Lozano Long School of Medicine at The University of Texas Health Science Center at San Antonio, also known as UT Health San Antonio, served on the committee that produced the report.

"It was a labor of love to work on this report related to long COVID with the National Academy of Medicine. To be able to represent UT Health San Antonio was an honor. Most importantly, we were able to delve into the literature and tell the story of how some of our patients with long COVID are being disabled by the condition," Verduzco-Gutierrez said.

While most people infected with SARS-CoV-2, also known as COVID-19, recover within a few days or weeks, millions of others around the world continue to suffer with a variety of symptoms for months or even years following an acute infection.

The U.S. Census Bureau and National Center for Health Statistics Household Pulse Survey reports that nearly 18% of U.S. adults have experienced long COVID and about 7% of U.S. adults are currently experiencing long COVID.

A working definition of long COVID was first created in 2022 at the U.S. Department of Health and Human Services. The Administration for Strategic Preparedness and Response and Office of the Assistant Secretary for Health wanted to reevaluate that definition and tasked NASEM with providing a working definition and related terms.

Without a consistent definition, patients can be caught up in a "diagnostic limbo," said committee chairman Harvey V. Fineberg, MD, PhD.

The definition created by the committee at the end of a two-year, multi-phased process states that long COVID is:

"An infection-associated chronic condition (IACC) 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."

Definition process

The committee gathered information from current research, conducted interviews with members of the public and pulled from the extensive knowledge of medical experts on the committee. More than 1,300 people from various medical fields and individuals with long COVID experience participated in the process through questionnaires and virtual focus groups.

Participants noted that previous long COVID definitions were too broad and did not list specific symptoms. Additionally, they wanted a definition that used terminology that highlighted the broad range of potential symptoms and diseases related to long COVID and the severity of this condition.

"Inconsistent disease terminology and meaning can confound clinicians, limit the generalizability of research findings and inhibit patients from obtaining the recognition, care and support they need," Fineberg said.

Unlike most NASEM reports that aim to provide the "final word" on a topic, this definition for long COVID is expected to remain fluid and adaptable as new information becomes available.

For patients to be able to receive treatment, services and benefits, a common definition was necessary for consistent diagnosis, to promote awareness and acceptance of long COVID as a valid condition.

Long COVID symptoms

There are more than 200 reported long COVID symptoms. The new definition states "any organ system can be involved and long COVID patients can present with single or multiple symptoms" including:

• Shortness of breath, cough
• Persistent fatigue or post-exertional malaise
• Difficulty concentrating, memory changes
• Recurring headache
• Lightheadedness
• Fast heart rate
• Sleep disturbance
• Problems with taste or smell
• Bloating, constipation or diarrhea

Long COVID can also present as "single or multiple diagnosable conditions" including:

• Interstitial lung disease and hypoxemia
• Cardiovascular disease and arrhythmias
• Cognitive impairment
• Mood disorders, anxiety
• Migraine
• Stroke
• Blood clots
• Chronic kidney disease
• Postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Mast cell activation syndrome (MCAS)
• Fibromyalgia
• Connective tissue diseases
• Hyperlipidemia
• Diabetes
• Autoimmune disorders such as lupus, rheumatoid arthritis and Sjogren's syndrome

Next Steps

The committee left the definition of long COVID intentionally broad to ensure anyone experiencing long COVID can receive a diagnosis and seek treatment. While the condition always follows a case of acute COVID-19, laboratory evidence of an infection is not required for diagnosis. The committee's report states that long COVID sufferers may report fluctuating symptoms or a delay between the end of the acute infection and the beginning of long COVID symptoms.

Verduzco-Gutierrez encourages all federal, state, local, private and public entities to use the provided definition and the term for long COVID.

"A Long COVID definition: A Chronic, Systemic Disease State with Profound Consequences." Prepublication release June 11, National Academies of Sciences, Engineering, Medicine. National Academies Press. https://nap.nationalacademies.org/read/27768/chapter/1

Recorded webinar about the Long COVID definition report available here

Read more about Verduzco-Gutierrez's work on long COVID:

Making strides on the long road of long COVID

Monic Verduzco-Gutierrez discusses long COVID disability before house subcommittee

BE Latina: We spoke to Dr. Verduzco-Gutierrez about long COVID - This is what she had to say

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