Eleanor Spicer Rice writes scientific papers. She holds a doctorate in entomology from N.C. State University, and co-founded Verdant Word, a website dedicated to communicating scientific ideas to a broad audience.
After recovering from a relatively mild bout with COVID-19, she noticed it became hard for her to focus. She sometimes couldn't even remember the last sentence she just read.
"I started to realize there was stuff that was just kind of off with my brain," she said. "I couldn't remember things that people had told me; or days that had happened; or things that I had done."
One Monday, she visited a friend who suggested they listen to a record they listened to the previous Friday, just three days earlier. Spicer Rice said she had absolutely no recollection of that at all: not listening to the record, not the band, none of the songs.
"That can really mess with your head," she said.
For many, life is getting back to normal. But some doctors estimate that 30% of people who contracted the coronavirus will experience symptoms associated with long COVID. Some have had to drastically change their lives to deal with these symptoms, and doctors are still learning about how to treat these patients.
Take Justin Foster. He looks like what many would consider the apex of health. He played defensive tackle for Clemson and earned an honorable mention All-ACC selection in 2019. Like Spicer Rice, he also had what he considered a mild case of COVID-19 and thought he'd join his teammates again in no time.
Instead he became incredibly fatigued. He could barely complete what used to be simple running or lifting drills. He thought maybe he was just out of shape, so he pushed himself. But doctors quickly realized something else was hampering him.
"It got to a point where I was just getting so fatigued and I just didn't feel good after doing runs that they stopped me because my heart rate was really high," he said.
Spicer Rice and Foster would learn that they suffered symptoms associated with long COVID, a condition that affects people months after they've recovered from COVID-19 that researchers around the world are racing to learn more about.
"It has been very perplexing," said Dr. Loretta Que, a pulmonologist with Duke Health and a professor of medicine who has studied long COVID. "The virus is clearly not there at that time point. But yet the patients are still having symptoms."
These are symptoms that can dramatically alter people's lives. Foster retired from football and helped his father, who works in the trucking industry. But at times he was so fatigued that he wasn't much help. Spicer Rice had difficulty interpreting the world around her. She stopped driving because she didn't trust her brain to correctly identify a red or green light.
"It is not surprising to us that some of these patients are having symptoms post COVID, because we see patients present post-flu with prolonged symptom burdens," said Que. "What's surprising to us in this case is that there are many patients whose symptoms are even more prolonged than what we might have originally expected."
Also, the severity of the initial COVID-19 infection doesn't seem to play a role, said Dr. Coral Giovacchini, a pulmonologist and critical care specialist with Duke Health and an assistant professor of medicine.
"Something that's been maybe more unique with this virus than others is that even if you had a mild syndrome to begin with, you can still have lingering symptoms after. Which has been something that's a little bit new for us," she said.
Doctors say it's difficult to say how many people will develop long COVID symptoms, but they estimate that roughly one out of three people who had COVID-19 will experience lingering symptoms. Because symptoms are difficult to quantify – fatigue or brain fog are common – it's hard to know if symptoms are directly from the coronavirus infection, or from something else.
And right now, doctors can't treat the underlying cause, only the symptoms, says Dr. John Baratta, director of the UNC COVID Recovery Clinic.
"Since we unfortunately don't have a clear understanding for the underlying causes of long COVID, there isn't a single specific treatment that we can provide," he said. "What we can do, and I think we have become pretty good at it, is provide supportive care. So we can address a person's symptoms, and help to improve the symptoms that they're experiencing, and substantially improve their functioning, or their pain or their fatigue."
Encouragingly, patients do seem to recover. Foster said he has more energy throughout the day and doesn't feel as restricted by his symptoms. Spicer Rice likened her recovery to running across a lake on skipping stones, but not knowing if one is missing where she might fall into the lake and suddenly not be able to recall any memories from high school.
"Before there were no skipping stones at all," she said. "I was just floating around in this blackness and didn't know how to get out."
Cost burden of care
Both Foster and Spicer Rice said they felt grateful for the support they received. In Foster's case, that came from a medical team at a NCAA Division I football powerhouse. Spicer Rice has good health insurance, and home and work partners who could pick up responsibilities for her.
"I have what's called moderate long COVID," said Spicer Rice, emphasizing moderate almost in disbelief. "I'm a moderate case, and I'm questioning my sanity every day."
At the long COVID clinics of Duke or UNC, doctors see patients who sometimes need to call for help from the grocery store because they have completely forgotten how to get home.
"They don't know how to pick up their children from school; they can't remember how to get places," said Spicer Rice. "There are single parents. There are people who have to go to work every single day for more than eight hour-work days, and then come home and take care of their house, while at the same time not having the functioning to do this stuff, or having this network of people who just swoop in and take care of you. And that's happening all over the state."
Even if patients can find good medical help, paying for care is always a concern. And patients are hit from two sides: on one side, they face stacking medical bills; on the other, their symptoms make it more difficult to work. A Blue Cross and Blue Shield of North Carolina spokeswoman said the health insurer covers "COVID-19 treatment based on each individual’s insurance plan, including doctor visits and medically necessary care." But even good insurance comes with co-pays, said Baratta, the UNC doctor.
"In our long COVID clinic, more than half of the patients that we've seen have had to reduce their amount of work, or suspend work all together because of their COVID symptoms," he said. "So this really impacts their day-to-day ability to pay bills. Also, it can be a challenge when they're needing to undergo substantial medical evaluation and treatments."
Doctors encourage anyone living with symptoms they think might be associated with long COVID to contact a health care provider. Giovacchini said clinics like hers are learning more every day, and do make a difference in helping people.
"The vast majority of patients … that develop long COVID symptoms are recovering and getting back to a functional baseline," she said. "And again, something that's reassuring is that a lot of the symptoms that we do see – even though we don't necessarily know exactly what's driving them – are symptoms that are treatable through methods that we treat other similar diseases. And so we can help patients symptomatically through a lot of this as long COVID symptoms progress, or last for them, and ultimately, head toward a place of recovery."
