“Long-distance” sufferers seemed like an aberration at the start of the COVID pandemic — an unfortunate few who, for whatever reason, didn’t seem to be fighting the disease.
Almost three years later, we know better. Long COVID is far from rare and the ranks of those affected are swelling.
According to the US Centers for Disease Control and Prevention, up to one in five adult Americans who have had COVID-19 will live with long-term COVID, a condition loosely defined as symptoms that last long after the original COVID infection has ended or appear.
Many have accepted COVID infection as inevitable – and are now even repeating COVID infection. It may be tempting to accept a long COVID as inevitable as well, especially given studies that have found that catching the virus multiple times can increase your risk of contagion.
But such fatalistic thinking is not logical, says Dr. Alexandra Brugler Yonts, an infectious disease specialist who leads a long-running COVID clinic at Children’s National Hospital in Washington, DC Wealth.
“It’s like saying every single person is going to get the flu,” she says. “Absolutes are dangerous.”
dr Panagis Galiatsatos, an assistant professor at the Johns Hopkins Division of Pulmonary & Critical Care Medicine who has long treated COVID patients, says COVID does not have a “binary outcome.”
“There’s a spectrum in how people get it,” he says Wealth, Adding that “how you catch COVID” can determine if you develop long-term COVID. For example, those who vaccinate and/or treat their infection with the antiviral Paxlovid may have a lower risk of developing the new disability, some studies suggest.
Statistics such as the CDC’s claim that one in five US adults who have had COVID have long-term illness with COVID are generally based on surveys in which individuals are self-identifying and not necessarily diagnosed.
Such polls are basically asking, “Have you had any new health issues since you got COVID?” Brugler Yonts says. “It’s a challenge because life goes on and people still develop health problems.”
It is often impossible to tell whether a post-COVID health condition would have emerged without an infectious infection, or whether the infection would have accelerated a disease process that had already occurred, she adds.
There is no official consensus anyway on how to define the condition, which has more than 200 possible symptoms and can appear from immediately after the infection has cleared to months later.
“We are still struggling as a medical institution to adequately define long COVID,” says Galiatsatos. “There is no biomarker, no test.”
These factors lead Galiatsatos and Brugler Yonts to believe that real long COVID is probably less common than we think — a comforting thought.
All viruses are capable of causing complications after an infection has ended, “and we need to tease them [cases] out,” says Galiatsatos.
“It’s no different than scratching your leg. The initial effect of the scratch is gone, but the scar will take some time to heal. Patients who are still coughing after two months – that is part of the healing process.”
COVID, like other viruses, can cause organ damage that “takes some time to mend,” he says.
But that’s not long COVID, in his estimation. He defines True Long COVID as new symptoms that persist six months or more after infection and for which no other cause can be found. Such patients tend to have symptoms of shortness of breath, chest discomfort and fatigue but no obvious organ damage, he says — and often had neurological symptoms such as headaches and loss of taste and smell during their acute infection.
“Long COVID is a diagnosis of exclusion,” says Galiatsatos. “There are many potential symptoms that are more random than anything else.”
Vaccinations and antiviral drugs like Paxlovid “can keep the viral load low enough that it doesn’t develop into neurological complications,” says Galiatsatos. “I have a hard time believing that something so common will long bring about COVID for everyone.”
Is long COVID a personal inevitability or impossibility? It’s impossible to know, and such uncertainty can be demoralizing.
But don’t throw your hands in the air and be careful, advises Brugler Yonts.
“Just because I’m likely to get the flu at some point in my life doesn’t mean I lick subway tracks.”
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