About one in five people who contract COVID-19 suffer from new or lingering symptoms of the virus weeks or even months after their initial infection. It's a condition the medical community now calls "long COVID."
As to what "long COVID" actually is, that depends on who you ask. Patients describe more than 200 different symptoms, ranging from fatigue and brain fog to prolonged loss of taste and smell, depression, anxiety, and sleep disorders.
"Fully understanding and characterizing all the parts and pieces of it is still work we have to do," said Dr. Sarah Stewart de Ramirez, associate dean for population health, equity, and innovation at the University of Illinois College of Medicine Peoria.
Defining long COVID is the goal of the National Institutes of Health's new $22 million, four-year study, "Researching COVID to Enhance Recovery," or RECOVER. Researchers affiliated with the University of Illinois in both Chicago and Peoria are among those leading the Illinois-based consortium ILLInet RECOVER.
"We're talking about millions of Americans, if not just thousands here in our central Illinois community, that will probably see signs of long COVID. So the challenges we face are significant," said Dr. Vaughn Hanna, a clinical practice rheumatologist at UnityPoint Health.
About 200 adults will participate in the Peoria research study. OSF HealthCare and UnityPoint Health will host testing sites for the study. The Peoria City/County Health Department, Central Illinois Friends, Peoria Friendship House, and Tri-County Urban League are also collaborating on outreach and recruitment efforts.
The study involves multiple visits to clinics over the four-year window of the research, and multiple surveys about basic health information. Dr. Sarah Donohue, UICOMP's director of research services, said the team is particularly interested in recruiting people who were recently infected by COVID-19.
"Based on what we're already learning, we expect to also be adding the option to join NIH-funded clinical trials to test strategies to treat and prevent long COVID in the fall," Dr. Stewart de Ramirez said.
Dr. John Hafner is the principal investigator for OSF HealthCare. He said physicians and clinicians were essentially asked to fly the airplane as it was being built when COVID-19 first emerged. More than two years later, many patients are still battling the disease after recovering from the initial infections.
"This trial is really going to afford us the opportunity to start to really to begin to understand a very important part of this pandemic, which is the sequelae that are occurring after patients are recovering from their initial infection, the so-called long COVID," Hafner said. "I'd like to say I don't see this very often. But unfortunately, in my patient populations that I care for every day, I have patients coming to see me because they have prolonged symptoms or complications of COVID."
Hafner said he most recently treated a long COVID patient on Sunday night. The patient was suffering from a pulmonary embolism.
Dr. Stewart de Ramirez said the study will look at long COVID through an equity lens. Members of the Latino or African American communities are almost three times more likely to suffer from the impacts of long COVID than their white counterparts. The reasons why that is aren't yet well understood, she said, but the study is the first step in understanding what she calls "a new disability" for many.
"Because we're defining what long COVID is, it makes sense to make sure that all people have a voice when we understand that. It is a true collaboration throughout the country, through the state, and also locally," she said.
