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Here’s what physicians have learned about long-term COVID-19 conditions

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WUFT
The University of Florida Center for Smell and Taste in Gainesville regularly holds conferences for people affected by taste and smell disorders,

UF researchers are finding that more and more people are experiencing long-haul conditions following their recovery including fatigue, brain fog and parosmia, a distorted sense of smell.

The Florida Department of Health reports new cases of COVID-19 each day, and researchers are finding that more and more people are experiencing long-term conditions following their recovery from COVID-19, which include fatigue, brain fog and parosmia.

Dr. Steven Munger is a professor in the Department of Pharmacology and Therapeutics at the College of Medicine at the University of Florida. He’s also director of UF’s Center for Smell and Taste at the McKnight Brain Institute.

Munger said his team and other medical researchers around the world became aware early on in the pandemic that smell loss, or anosmia, was a common and early symptom. He said anosmia, when compared to other symptoms of COVID-19, is much more pronounced.

“One major area of investigation is trying to understand how anosmia is happening, with the hope that if we understand how the virus is disrupting smell, it can lead to treatments that ameliorate that,” Munger stated.

Munger says his team currently has support from the National Institutes of Health to develop and administer smell tests. He said a smell test acts like a “canary in the coal mine,” indicating if a person has early onset of COVID-19. The simple screening tool, called Adaptive Olfactory Measure of Threshold, or ArOMa-T, can be given to people in the workplace and at home.

The UF Center for Smell and Taste, which regularly holds conferences for people affected by taste and smell disorders, also works closely with U.K.-based charity Fifth Sense.

Munger said many people who have anosmia will typically recover their smell “fairly quickly, in a matter of days to weeks.” For others, Munger said recovery from anosmia can “take weeks to months,” and about 5% to 10% of people will have prolonged or permanent smell loss.

“It’s important to recognize that this isn’t just a quirky, interesting thing. This is really impactful for people. Not only does it affect the way you perceive food and drink, but it can also really impact your diet,” Munger stated. “It also is a safety issue. You can’t smell smoke with a fire, a natural gas leak, or spoiled food.”

During a person’s recovery period from anosmia, Munger said that some people are developing parosmia, a distorted sense of smell.

“You smell a flower, and it smells like burning rubber. Or rotting flesh. Or feces. These unfortunately tend to be repugnant smells; they often are triggered by environmental smells, like foods and drinks. Coffee and chocolate can be triggers very commonly for people with parosmia. And we don’t know how parosmia arises,” Munger said.

For student Diana Stanisavljevic, smells are manifesting as cat food. She said she’s had to completely change her diet, cutting out some of her favorite foods, like chicken and eggs.

“Now I hate it, because when I smell the smell, I just- Mmm. No. I can’t,” she said.

Stanisavljevic was unvaccinated when she caught COVID-19 in August and has had parosmia for five months now following her recovery of COVID-19.

On top of anosmia and parosmia, people have been experiencing other symptoms like chronic fatigue. Laura Collopy, a clinical social worker at UF Health Shands Hospital, was vaccinated at the time she was diagnosed with COVID-19. Since last July, Collopy has not been able to come back to work.

“There’s just no way I’d be able to make it through a workday or a work week. I’m too fatigued,” she said.

Moreover, Collopy has brain fog. She described how her job requires a lot of multitasking, thinking and running around the hospital, which she can no longer do. She also mentions how going out to social events is difficult for her.

“I’ll lose track of what I’m saying in the middle of a conversation,” she said.

Despite the challenges, Collopy said she is trying “to live as normal a life as possible,” and is making “baby steps one day at a time.”

As more research is conducted, there is hope. Dr. Irene Estores, who is a professor in the UF Department of Physical Medicine and Rehabilitation at the College of Medicine and director of UF’s Integrative Medicine Program, has set up a long-haul COVID clinic where she treats patients affected by different variants of COVID-19.

“In my long COVID clinic, I see patients who were infected during the first wave, which they call the Alpha variant. I see patients who were affected by the Delta variant, and unfortunately, I am also seeing patients who had the Omnicron variant,” Estores said. “Some of them were previously unvaccinated, but some of them were breakthrough infections. So, this is a real problem we are seeing as part of this pandemic.”

Estores also said that she wants to assure her patients that their voices are being heard and that their symptoms are no longer being dismissed as something in their heads.

She says patients are given an information sheet in her long-haul COVID clinic and are placed into subgroups. The first subgroup includes those who have mild functional limitations.

“I educate and teach them how to self-manage their symptoms, and I steer them toward reliable, credible resources that would not sell them products or anything, like Long COVID Physio, which was developed by physiotherapists,” she said. Long COVID Physio is an organization that offers peer support.

The second subgroup includes patients with moderate limitations and the third subgroup is for patients with severe limitations.

“I refer them to a specific physical therapy program, occupational therapy program, or cognitive rehab program, depending on what their symptoms are, and their functional limitation,” Estores said.

Estores also described how she and other physicians atUF Health have started an educational series, in which they hold monthly case conferences for therapists who are interested to learn more about long-haul COVID. She says they’ve discovered that they need to make significant changes in handling cases of patients with long COVID.

“We should be modifying our previous rehab protocols for these patients, because the previous rehab protocols for reconditioning actually are not effective to manage the disabling fatigue that’s seen in COVID,” she said.

Other physicians, like Amy Eubanks of Tanner Health, have found out that long-term conditions can arise in those who were asymptomatic during their infectious period.

“Your likelihood of having a long-term effect from COVID is not necessarily related to the severity of your COVID infection,” she said.

Eubanks said that she’s finding symptoms and conditions vary depending on which variant of COVID-19 her patients were infected with.

“With the earlier variants, we saw a lot of the cardiovascular issues, like POTS, or Postural Orthostatic Tachycardia Syndrome. We saw a lot of that which lingered, and we had to send a lot of patients to cardiology to make sure nothing else was going on.”

Eubanks says most people experiencing long-term conditions “gradually get better, but the rate of improvement varies,” depending on other factors, like one’s age or if they have any other chronic conditions.

However, Eubanks reminds people to not lose hope and that one should refer to credible sources, like those from the Centers for Disease Control and Prevention (CDC) to learn more about COVID-19. “Misinformation is a very hard pill to swallow as a medical provider because, you know, we try to give our patients the best information we can.”

Erika Clesi is a reporter for WUFT News who can be reached by calling (352) 392-6397 or emailing news@wuft.org.