Most were not hospitalized, but their long-term symptoms can be severe and last for months, say the scientists behind the state’s only “long-hauler” clinic.
Six months after the University of Utah launched the state’s only clinic for “long-hauler” COVID-19, doctors say the patients who are reporting long-term and sometimes debilitating symptoms are predominantly young.
And, before they contracted the coronavirus, most of them were relatively healthy, too.
“Honestly, we have seen a lot of patients that really had no medical history prior to this that they could really speak of,” said Dr. Jeanette Brown, a pulmonologist and medical director of the U.’s COVID-19 Long Hauler Clinic. “It’s really affecting a lot of people who are younger. The average age group — and this has been described in studies as well — ranges between the 20s to the 50s.”
Since the clinic opened in July, it has provided care and referrals to about 600 patients, and another 200 are waiting for appointments, Brown said.
“We see about five to 10 new referrals every day,” Brown said. The clinic also has made 1,300 referrals to other specialists, she added.
Patients’ symptoms have ranged from prolonged loss of smell and ringing in the ears to “brain fog,” heart problems and severe, debilitating fatigue, to the point where symptoms are “interfering with daily life and ability to work,” Brown said.
Some Utah patients have described being unable to drive, bathe themselves or even stand as their health deteriorated in the weeks after contracting COVID-19. Others have experienced hair loss, vision problems, and smell and taste returning but with distortions, Brown said — for example, one patient described developing an intolerance for the flavor of mint.
“As those nerves repair for smell and taste, they may sort of rewire funny,” Brown said. Still others have experienced “nerve pain” and temporary “severe weakness, almost like paralysis,” Brown said.
Long COVID is defined as the persistence or development of symptoms at least three months after a patient is diagnosed with COVID-19, though the clinic also sees patients who remain ill eight weeks after they were infected if they weren’t hospitalized.
Scientists connected to the clinic are enlisting patients to try to answer an array of questions about how “long COVID” develops, said Dr. Rachel Hess, chief of health innovation and research at the U. For example: How do white blood cells respond when someone first is infected, and is that response linked to long-term illness? Who is most likely to develop long COVID?
Researchers at the University of Zurich in Switzerland, for example, last month identified a combination of factors — age, a history of asthma, and antibody levels — that were about 75% effective in predicting patients’ risk of long COVID.
“This is preliminary research that needs to be verified, but again could tell us who’s at risk for more of a long haul phenotype,” Brown said.
The Utah clinic this month joined federal researchers who are reviewing medical records of a large swath of COVID-19 patients to try to identify commonalities, Hess said.
The study “brings together data from both electronic health records to look broadly at what circumstances caused long COVID,” Hess said, as researchers compare patients with long COVID to those without in order to “understand where there are things early in their infection that we could have seen either biochemically in lab tests or in other health conditions that make them at higher risk for long COVID.”
That information could not only help predict who is at risk of long COVID, but also provide insight into how they recover and potentially develop treatments, Hess said.
More data also is needed to understand the long-term implications for people who suffer from long COVID — especially how long it might take them to recover.
“There [are] variable patterns,” Brown said. “There [are] definitely people that get better over the course of weeks to months. But there are folks that persist.”
Previous research, for example, followed up with long COVID patients after seven months and found about half of the patients had returned to working at their full capacity, about 30% were still working reduced hours and another 20% had not returned to work, Brown said.
“And this focused on patients that were in their late 20s to 50s mostly, which is your prime working population,” Brown said. “There’s definitely a population that has been kind of persistently disabled from this. So we’ll continue to see how that data plays out.
“The key thing for our clinic is we want folks to understand that we’re here to support them, you know, throughout that journey and to get them access to care, to treat those symptoms,” Brown said. “I know it can be very challenging to have to endure all those things while you’re waiting for … the research and understanding to catch up.”