In the year before the omicron variant began to spread in the United States, an estimated one-third of 18- to 45-year-olds had gotten sick with COVID-19. Just three months later, that figure doubled, and I was among the people who caught the coronavirus for the first time.
I was in the first wave of people who got omicron in December 2021, as I was finishing my fall semester at Cornell University. On the day I received my positive test result, I knew it was coming. I had a sore throat, cough and my whole body ached. For the next several days, I was so tired that I had to sleep for more than half the day while trying to finish my final exams and help report on the outbreak for my college daily newspaper. Days later, after taking every vitamin, supplement and over-the-counter medicine I could get, I tried to get back to my normal routine, starting with a workout on Zoom. I found myself needing to stop every couple of minutes to catch my breath.
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Time passed. I began to exhaust the list of YouTube workouts, and I began to feel better, but I never really got to 100 percent. Six months later, my friends and family no longer asked: “Do you feel any better?” In some ways I do. But between feeling much more out of breath every time I go to exercise than I used to or often hitting a wall at 3 p.m., I’ve wondered: Am I among the estimated 1 in 5 people in the United States who have long COVID?
What initially seems like a simple question is actually much more complicated than yes or no. There is no biological test — no swab or blood test — to say that someone has long COVID. Doctors and public health organizations don’t have a universal definition of the condition.
Putting a name to it
While the disease caused by the novel coronavirus was given the name COVID-19 in February 2020, long COVID surfaced a few months later as a hashtag on Twitter when Elisa Perego began using the term in her tweets. The archaeology researcher who has become a long COVID advocate, first fell ill in late winter of 2020 in Lombardy, Italy. Three months later, she relapsed — her blood oxygen levels began to drop again, and she may have had a small blood clot in her lungs. This was not the same COVID-19 that Perego was seeing on the news.
“For me, the idea of long COVID was about reframing COVID,” she told me over e-mail because of ongoing symptoms that make it difficult to talk for long periods of time. The term not only gave her experiences a name but began to unite what was a growing group of those who had COVID-19 and couldn’t seem to shake the aftereffects.
“Very prolonged positive tests were being talked about in Italy. A grassroots movement of people who weren’t recovering from COVID was burgeoning on Twitter and other media,” she says. “So I thought the hashtag and the name long COVID could be a way to link this growing community.”
Since then, other terms have also been used: post-acute sequelae of SARS CoV-2 infection, or PASC, post-acute COVID-19 and post-COVID conditions. The U.S. Centers for Disease Control and Prevention uses that last one, writing broadly “post-COVID conditions are a wide range of new, returning or ongoing health problems that people experience after first being infected with the virus that causes COVID-19.”
The only clear distinction that health professionals seem to agree on when it comes to long COVID is that it is the emergence or change of symptoms some time after being infected with the coronavirus. But how long after and what those symptoms are aren’t universally agreed upon.
Right now, that may be for the best, experts say.
A broad definition helps people with long COVID recognize that they have it and receive the care they need, says neuroscientist David Putrino at the Icahn School of Medicine at Mount Sinai in New York City. It also helps people from historically excluded groups who have long COVID get a proper diagnosis, when they may have otherwise been written off and labeled as psychosomatic.
Yet, even with a broad definition, people might not know they have it. While recently recruiting for a long COVID clinical trial, Putrino found that about half of the people that reported they had “fully recovered” failed his screening for post-COVID conditions because they still had lingering symptoms.
Many of these people fall into a similar camp as I do: They are not debilitated but they are “slowed down.” And similar to me, Putrino says, many of them say that they have fully recovered but have one symptom that doesn’t seem to go away — like having trouble exercising or needing to go to sleep much earlier than they used to or noticing they need an extra cup of coffee in the afternoon.