Kristin Novotny once led an active life, with regular CrossFit workouts and football in the front yard with her children — plus a job managing the kitchen at a middle school. Now, the 33-year-old mother of two from De Pere, Wisconsin, has to rest after any activity, even showering. Conversations leave her short of breath.
Long after their initial coronavirus infections, patients with a malady known as “long COVID” continue to struggle with varied symptoms such as fatigue, shortness of breath, gastrointestinal problems, muscle and joint pain, and neurological issues. Novotny has been contending with these and more, despite testing negative for COVID-19 seven months ago.
Experts don’t yet know what causes long COVID or why some people have persistent symptoms while others recover in weeks or even days. They also don’t know just how long the condition — referred to formally by scientists as Post-Acute Sequelae of SARS-CoV-2 infection, or PASC — lasts.
But the people who didn’t test positive for COVID — due either to a lack of access to testing or a false-negative result — face difficulty getting treatment and disability benefits. Their cases are not always included in studies of long COVID despite their lingering symptoms. And, sometimes as aggravating, many find that family, friends or even doctors have doubts they contracted COVID at all.
Novotny, who first became ill in August, initially returned to work at the beginning of the school year, but her symptoms snowballed and, one day months later, she couldn’t catch her breath at work. She went home and hasn’t been well enough to return.
“It is sad and frustrating being unable to work or play with my kids,” Novotny said via email, adding that it’s devastating to see how worried her family is about her. “My 9-year-old is afraid that if I’m left alone, I will have a medical emergency and no one will be here to help.”
Data about the frequency of false-negative diagnostic COVID tests is extremely limited. A study at the Johns Hopkins School of Medicine and Bloomberg School of Public Health, which focused on the time between exposure and testing, found a median false-negative rate of 20% three days after symptoms start. A small study in China conducted early in the pandemic found a high rate of negative tests even among patients sick enough to be hospitalized. And given the dearth of long-hauler research, patients dealing with lingering COVID symptoms have organized to study themselves.
The haphazard protocols for testing people in the United States, the delays and difficulties accessing tests and the poor quality of many of the tests left many people without proof they were infected with the virus that causes COVID-19.
“It’s great if someone can get a positive test, but many people who have COVID simply will never have one, for a variety of different reasons,” said Natalie Lambert, an associate research professor at the Indiana University School of Medicine and director of research for the online COVID support group Survivor Corps.
Lambert’s work with computational analytics has found that long haulers face such a wide variety of symptoms that no single symptom is a good screening tool for COVID. “If PCR tests are not always accurate or available at the right time and it’s not always easy to diagnose based on someone’s initial symptoms, we really need to have a more flexible, expansive way of diagnosing for COVID based on clinical presentations,” she said.