Anil Oza is a 22-year-old graduate of Cornell University and a budding science journalist. In December 2021, Oza contracted the Omicron variant and soon developed the now-familiar symptoms of COVID-19: a sore throat, cough, aching body, and exhaustion. Though he began to feel better, he was still not his normal self, even after six months. At that point, Oza began thinking he might have Long COVID. But, he wondered, what did that actually mean? In search of an answer, he decided to interview some experts.*

What’s in a name?

Elisa Perego, M.A, Ph.D. first coined the term Long COVID in 2020, after relapsing from COVID-19 she had gotten several months earlier. Her new symptoms didn’t resemble anything she was hearing in the news, writes Oza. Perego explained that she wanted to “reframe COVID.” As talk of the syndrome began to grow online, she and many others now had a name for their post-COVID experiences they could unite around.

Broad definition best?

Despite having a name, Long COVID still doesn’t have a universally agreed-upon definition. Experts seem to agree only that the condition involves lingering symptoms, or the appearance or change of symptoms at some point after initial infection. There is no consensus regarding what symptoms are involved or exactly how long after infection they occur. 

According to David Putrino, Ph.D., a neuroscientist at New York City’s Icahn School of Medicine, this broad definition may be for the best, as it could prompt people with Long COVID to seek needed care. 

Still, a vague definition may also prevent some people from recognizing Long COVID, even when they have it. While recruiting for a recent Long COVID clinical trial, Putrino found that half the candidates who considered themselves “fully recovered” actually had lingering symptoms.

Oza says many of these people are like him. They feel good, but are slowed down by a symptom that won’t clear, like breathlessness after exertion, or fatigue.

When does Long COVID begin?

Establishing when Long COVID begins is vital for identifying who has the condition, yet experts disagree on a timeline. 

• The Centers for Disease Control and Prevention (CDC) says Long COVID begins 4 weeks after infection.
• The World Health Organization (WHO) says it’s closer to 3 months after infection.
• The National Institutes of Health (NIH) defines it as 30 days after infection in children, but doesn’t define when for adults.

Putrino says the WHO’s three-month timeline is likely the most accurate, since many are still fighting acute infection after a month. Perego favors the four-week timeline. She doesn’t like the idea of people waiting until they fit into a clinical definition that may not even be accurate before they receive care.

That said, Perego and Josh Fessel, M.D., Ph.D., a senior clinical advisor at the NIH, believe Long COVID should be tracked over time to better understand what the condition is and is not.

Tracking Long COVID symptoms

Tracking symptoms of Long COVID is another way to understand the condition, but it’s not an easy task. The myriad possible symptoms often means a lengthy process of diagnostic elimination, which is difficult since Long COVID doesn’t always present the same symptoms and the same causes.

Medical epidemiologist Joan Soriano, M.D., Ph.D. says Long COVID may have seven or more underlying causes, similar to chronic fatigue syndrome. “Accordingly, any definition of Long COVID will not be simple.”

Zeroing in on a definition

Defining Long COVID involves many complicating factors, including:

• Recirculating coronavirus, or hidden virus fragments
• Post-infection autoimmune disorders
• Microclots (microscopic blood clots).
• Nagging symptoms, but without serious disability

Artificial intelligence (AI) may help with finding symptom patterns in large populations, which could then help to predict who may develop each type.

Sharing disease experience important

Oza’s life hasn’t been severely disrupted by the condition, as it has for so many others. This makes it hard for him to admit he may have Long COVID, even though the experts he interviewed for this article all agree he’s a likely candidate. Nevertheless, he feels it’s important for people to share their disease experience so we can learn more about Long COVID and develop reliable tests.

*Oza, A. (2022, July 29). I think I have long COVID. What does that mean? Science News. https://www.sciencenews.org/article/long-covid-definition-symptoms-treatment-coronavirus