When people first started getting COVID-19, there was little to be done. Four years later, there’s a vaccine that largely mitigates symptoms, protecting people from some of the more serious side effects of the virus.
But the virus is still spreading, and for just under 20% of the population that’s been infected, symptoms have been persistent past four weeks. Originally dubbed “long haulers,” this group now has its own diagnosis: long COVID-19, or post-COVID Conditions.
Data shows that around 17% of people in Illinois have experienced long COVID as of March, according to the Centers for Disease Control and Prevention (CDC). Finding data more granular — say, for central Illinois, or even McLean County — is a little trickier.
Central Illinois doctors point out that while symptoms of long COVID, or post-COVID conditions, are detailed, they’re expansive, making the condition hard to diagnose.
“If you see these lists about symptoms with long COVID, there are many body systems, many examples — almost 50 to 100 different things can quality,” explained Dr. Douglas Kasper, an infectious disease physician at the University of Illinois College of Medicine in Peoria.
The CDC broadly defines the Long COVID as “a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19.” Unlike with the COVID-19 virus itself, there’s no test to determine a diagnosis, and there’s no set treatment.
Kasper, who also does clinical medicine through OSF St. Francis Medical Center in Peoria, said that makes navigating the medical system for these people difficult.
“It is frustrating for the patient and the provider that there isn't a standard algorithm on how to apply it,” he said.
However, he added that it seems like the “system is learning,” since he's no longer getting outpatient long COVID consultation requests.
“I sense that those patients are either being referred away from infectious disease, meaning that the providers are finding them into these neurology clinics or rheumatology clinics, or something else,” he offered as a reason for the shift. “Or, (they) already figured out how to access the long COVID research clinics in Illinois.”
Both of which Kasper said he considers to be “successful outcomes,” because it means providers are finding a way to meet the patients' needs.
Kasper added that the COVID-19 vaccine "remains important as a tool to prevent long COVID" because research has found "individuals that chose to be vaccinated have had proportionately lower outcomes" of the condition.
Looking toward the future, Kasper said while there aren’t any long COVID research clinics in Central Illinois that he knows of, there’s one at the University of Illinois in Chicago that takes Central Illinois referrals. The University of Illinois College of Medicine Peoria is a partner.
While researchers try to determine the best plan of attack for diagnosis and treatment of the condition, providers are left trying to do the best they can for their patients.
Dr. Neil Jepson, a health psychologist with Carle Health in Bloomington, said he’s seen several clients who likely have long COVID, but he can’t determine exactly how many. He said it wouldn’t even feel right to give an estimate because symptoms are so variable.
“What I've usually seen is fatigue, memory problems, anxiety, depression,” he said, adding that “it’s pretty individual.”
And for issues like anxiety and depression, Jepson added that it’s essentially impossible to say the virus caused the conditions. He compared it to the issue of the chicken and the egg — who knows which came first.
Since there’s no cure-all, he focuses on treating the individual symptoms, whether they have a relation to COVID or not.
“It becomes a part of the picture for that person,” he explained, adding that “it's interesting because it can begin during the time of infection, it might be something that develops afterward, or maybe even have just a period of time that were there where it begins to pop up.”
Kasper in Peoria said some of the symptoms can be “debilitating” for people.
“They can cause them to miss work, they can cause them to not be able to participate in education or in family events,” he said.
In July 2021, long COVID started being considered a disability under the Americans with Disabilities Act (ADA), according to the U.S. Department of Health and Human Services.
Jepson said “these things feed each other” too. He said some people go through trauma when they have COVID. It can be life-threatening, forcing some to go on ventilators, having mental health ramifications.
Then, people might have lingering symptoms that are “unexplained” or “not easily explained,” he said, which can cause “additional frustrations” and “stress.”
For “invisible illnesses” that are chronic, Jepson said his best advice is to talk to someone.
“Just understand that coping with it is going to require patience and that self-compassion… and building support,” he said, adding that hopefully, researchers will find tangible treatments soon.
