Experts Say COVID-19 'Long-Haulers' Need a New Name

person with chronic covid wears heart rate monitor and listens to doctor

 

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Key Takeaways

  • People who experience long-term COVID symptoms are known as “long-haulers” or people with “long COVID.”
  • Advocates and experts say that there needs to be one medically recognized name.
  • An official, medically recognized name will help legitimize the condition, and allow for more effective research and treatment, experts say.

People who experience long-term symptoms of COVID-19, the disease caused by the novel coronavirus, are widely known as “long-haulers.” This term was born out of patients’ experiences with ongoing symptoms like fatigue, shortness of breath, and an inability to concentrate months after they’re cleared of SARS-CoV-2 infection.

Long-haulers are also referred to as people with “chronic COVID” or “long COVID." But some survivors and experts are pushing for a different name, or at least, consensus on one name.  

Diana Berrent, the founder of COVID-19 research and support organization Survivor Corps, recently asked Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, about landing on an official name in an interview.

Berrent suggested “long-term COVID” or “LTC-19,” the names Survivor Corps uses. 

“I think ‘long-term COVID’ is certainly better than ‘long COVID,’” Fauci said. “We are going to have a workshop in December [and] we could ask some of the investigators who are out there what their opinion is. It’s important to have an appropriate name so that it's taken seriously as an entity, as opposed to people not even knowing what to call it.”

A Name Helps Legitimize the Condition 

Like Fauci said, an official name helps legitimize and raise awareness about a condition that many people are struggling with—a condition some even doubt is real, says Natalie Lambert, PhD, an associate research professor of medicine at Indiana University and director of research at Survivor Corps. 

“When people with long-term COVID symptoms are going to their primary care physicians, if their physician has seen a lot of patients with these long-term symptoms, they're very aware of it,” Lambert tells Verywell.

“But in areas of the U.S. that haven't been hit very hard where a primary care physician may have only seen one or two people with COVID long-term symptoms, to them, it's not very real yet.”

A name, Lambert says, will give health workers across the country a basis to work from and help them understand the condition when they see it.

What Types of Symptoms Do "Long-Haulers" Experience?

Based on information available so far, long-term COVID-19 is a systemic, often debilitating result of a SARS-CoV-2 infection that lingers after a person's system has cleared the virus. The symptoms are extremely varied, and may include (but are not limited to):

  • Trouble breathing
  • Extreme fatigue
  • Changes in heart rate
  • Myocarditis
  • Skin rashes
  • Gastrointestinal problems
  • Loss of bladder control
  • Dizziness

An Official Name Makes Diagnosis and Treatment Easier

If there’s one medically recognized name for the condition, it can help doctors diagnose patients and make the best healthcare decisions. Right now, doctors and researchers are piecing together diagnosis criteria from their own experiences, international reports, and grassroots patient advocacy groups like Survivor Corps.

“Survivor Corps and I are working with experts and policymakers in thinking about writing up standard treatment protocols for long-term COVID,” Lambert says.

“We need to have that name and these standards of care, and I think that will bring a lot of instant legitimacy in the eyes of medical practitioners everywhere.”

There's a wide range of symptoms, Lambert says, and it's important that the term for this long-term condition encompasses them. A lack of COVID-19 diagnostic and antibody tests means a lot of people who experience ongoing symptoms don't have the "official" COVID diagnosis to validate their illness, even though what they're experiencing is very real.

"We're going to have to have a way of identifying presumed positive cases," Lambert says. "And I think it has to be flexible, because my research has shown that people experience a very wide range of symptoms."

Abdul Mannan Baig, MBBS, a senior instructor in the department of biological and biomedical sciences at the Aga Khan University in Pakistan, tells Verywell that a name is important in order for doctors to be on the same page about diagnoses.

Baig recently wrote an article on the naming issue stating that different terms describing the same condition adds to confusion around the disease and its symptoms. In his article, he suggests "the term chronic COVID syndrome (CCS) would be a more traditional way of symbolizing the so‐called long‐COVID and long‐haulers in COVID‐19."

What This Means For You

An official and consistent name for COVID "long-haulers" will help legitimatize the condition and also improve patient care, experts say. Right now, much is still unknown about long-term COVID-19 symptoms and how long they can last, but landing on a universal name is a start to bettering our understanding.

Baig says the name “chronic COVID syndrome” is more appropriate because "chronic" and "syndrome" are medically used terms. This name would also mean that a patient would need to have symptoms of COVID-19 for a determined amount of time after testing positive for the virus, Baig says—something experts would need to agree on. Having a standardized range of time would help limit patients from self-diagnosing themselves as “long-haulers,” too.

“One patient with chronic COVID syndrome may say, ‘My neighbor recovered in a week. I'm taking 15 days. I'm a long-hauler,’” Baig explains. “There should be some consensus at the scientific level.”

Paperwork, Journal Articles and News Stories Benefit From the Same Name 

In the U.S., Lambert says an official name is also important because “it's actually one of the first steps before we can create billing codes—which is essential for people getting reimbursed for COVID-related medical expenses.”

Baig also says if some people refer to COVID survivors as “long-haulers” while others say “long COVID” in journal articles or research, there’s inconsistency. He says the name should be decided—and soon—so that research and public documents use the same terminology. 

A universally accepted name will also make reporting on "long-haulers" easier, experts say. As with other diseases in the past, giving a condition or syndrome an official name makes understanding it easier for both journalists and citizens.

"The name is more than just being able to agree on something so we can talk about it," Lambert says. "The name is very much recognition."

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  1. Berrent, D. A Conversation With Dr. Fauci. [Webinar series]. United States: Facebook; 2020.

  2. Baig, A. Chronic COVID Syndrome: Need for an appropriate medical terminology for Long‐COVID and COVID Long‐HaulersJ Med Virol. 2020. doi:10.1002/jmv.26624

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