It’s been more than two years since Jarrett Banwart tested positive for the coronavirus, but the 59-year-old has yet to feel back to normal.

Banwart was in excellent health before he got sick in March 2020. An avid cyclist, he used to bike 40 to 50 miles several times a week. He hiked and did yoga and Pilates. He worked a lot, a finance job at a Seattle-based dairy company.

Then came breathing difficulties, body aches, a dry cough and a fever.

Four months later, something else — mainly frequent “brain fog” and severe fatigue — set in, making it hard to exercise, sleep or even work a full day.

Now Banwart, one of the millions of people who’ve developed long-term COVID-19 symptoms, often called “long COVID,” has had to confront a troubling question: “Am I going to get better?”

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Doctors generally define long COVID as a post-acute condition that causes a wide range of symptoms for over a month after testing positive for the virus. Scientists have learned a lot in the past two years about how the disease operates and how to treat it, including the use of existing medication.

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But some mysteries, like the condition’s biggest risk factors, still perplex scientists.

In the United States, more than 23 million people (430,000 in Washington) are estimated to have post-acute COVID symptoms, according to the American Academy of Physical Medicine and Rehabilitation, which uses COVID data from Johns Hopkins University. The estimate assumes 30% of survivors suffer from long COVID, a proportion based on a University of Washington study published in February 2021 that followed up with 177 COVID patients up to nine months after infection.

Many similar local research efforts across the country have included a couple of hundred participants. But a new, nationwide study, funded by the National Institutes of Health, is underway, with a plan to follow thousands of COVID patients over four years.

“It’s a huge problem,” said Dr. Janna Friedly, who directs UW Medicine’s post-COVID recovery clinic. “We really need on a national level more resources for these types of coordinated clinics for patients with long COVID. There’s obviously a huge demand and a very large, unmet need.”

The UW Medicine clinic has been seeing 150 to 200 new patients a month, in addition to about 200 more returning patients, Friedly said. Many considered themselves to be “very healthy” before they got sick, though some preexisting symptoms, like diabetes and hypertension, can put people at higher risk of developing long-term symptoms, she said.

And as the clinic gets flooded with new patients, some, like Daisy Sky Shangrow, have to wait months to get an appointment. Shangrow, 26, tested positive last September, and had to wait until December to see a clinic doctor.

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“I was like, ‘Wait am I still going to be sick then?’ ” she remembers thinking.

Treatment approach

Research has shown that more than 200 symptoms can arise in post-COVID recovery, Friedly said, though fatigue, cognitive issues, shortness of breath, headaches, chest pains, and loss of taste and smell are among the most common.

“Our approach is very individualized and sort of holistic,” she said. “We look at all the symptoms together, rather than each individual symptom separately.”

There isn’t any one treatment option that works for everyone, but medications for fatigue or autoimmune issues have helped some patients, she said. Clinic doctors also often recommend certain lifestyle changes, like switching to an anti-inflammatory diet or trying to improve sleep.

“A lot of symptoms people experience [are] related to inflammation as a part of an immune system response,” Friedly said. “So focusing on inflammation in the diet is really important — long COVID patients often can’t digest sugar or alcohol.”

She recommended a “Mediterranean diet,” which doesn’t have strict rules but is known to be heart-healthy and include a lot of fruits, vegetables and whole grains. Banwart, who’s been trying a more anti-inflammatory diet per the clinic’s suggestion, said he also eats a lot of berries and turmeric.

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Physical exercise, depending on a person’s symptoms, and supplements can also help, Friedly said. In addition, her clinic offers group sessions with a rehabilitation psychologist to help patients cope with ongoing anxiety, stress and uncertainty.

Vaccines have also proven to be effective in reducing a person’s risk of developing long-term symptoms, though most people who have already been diagnosed with long COVID and get vaccinated afterward don’t usually see any change in their condition, Friedly said.

In addition, most recent studies point to issues with a person’s immune system response, rather than a result of ongoing virus circulating in a person’s body, meaning long COVID patients aren’t usually contagious after their acute illness passes, she said.

And more research is underway.

Last month, UW Medicine, Swedish Health Services and the Institute for Systems Biology in Seattle joined the nationwide National Institutes of Health study and will contribute data from Pacific Northwest patients. Providence Sacred Heart Medical Center in Spokane also recently joined the study, The Spokesman-Review reported.

The study — known as RECOVER (Researching COVID to Enhance Recovery) — is expected to be the largest and most comprehensive long COVID research effort in the U.S. to date, said Dr. Helen Chu, associate professor of epidemiology, medicine and infectious diseases at the UW.

“I think it’ll give us value essentially in the numbers — the numbers of enrollees and their clinical characterization, and the numbers of blood tests and types of abnormalities we may be able to confirm with larger studies,” said Chu, who will be the study’s lead UW Medicine investigator.

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Some critics are concerned NIH’s recruitment efforts have been slow-paced, though initiative leaders have said the process has moved faster than any other study the organization has tackled, STAT News reported last month.

Anyone interested in learning more about the study can visit pnwrecover.org.

Seattleite Ivy Durslag, who’s also been feeling post-COVID symptoms for more than two years, joined the research effort as a participant, curious to learn more about her condition.

She had just come back from a trip to India in March 2020 when she noticed her sense of taste and smell had faded.

“I could smell rubbing alcohol, but nothing else,” remembered Durslag, 71.

Since then, smells have come and gone, she said. Within the first couple of weeks of testing positive, scents of chocolate, wine and coffee started to return. The smell of fruit came back quickly.

But more months passed and Durslag started noticing “phantom smells,” or parosmia, a condition that distorts a person’s sense of smell and has become common for those diagnosed with long COVID.

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“I had a bunch of them — burning flesh was a major one,” she said. “Then there was really intensive Mr. Clean smells.”

The smell of stale cigarettes also emerged. About a year after that, another round of parosmia hit her, this time rancid peanut butter. Once, a homemade soup gave her food poisoning because she couldn’t taste that the fish had gone bad, she said.

“I don’t know if it’s going to get any better,” she said. “I’ve learned to cope with it. … But it has been a debilitating loss for me.”

Hope for recovery

Despite her concerns, Durslag is grateful she hasn’t felt worse symptoms — and that she’s retired and doesn’t have to worry about returning to work.

Others, like Banwart and Shangrow, are still waiting to see what their futures hold.

“Some days are better than others,” said Shangrow, the 26-year-old. Before she got sick, she was working as a music teacher in West Seattle. But when an intense spell of dizziness and nausea sent her to the emergency room in January, she and her school decided she’d move to a more administrative, remote role for the time being — though it came with a pay cut.

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The financial toll has been hard on her.

“I’ve put in thousands of dollars to try and heal my body and mind from all of this,” she said. She recently started dance movement therapy, which wasn’t covered by her insurance, and has tried other treatments, like transcranial magnetic stimulation — an FDA-approved practice that sends magnetic pulses into the brain to reinforce neural pathways and communication — to boost her mental health.

“Not only did I lose my income from work, I also had to spend so much more to do the things that helped me get better,” she said.

And even if she was working the same number of hours, she said, her brain fog sometimes got so bad that maintaining basic spreadsheets and other administrative work gave her splitting headaches.

“It was a really surreal way to finish school and start my life post-graduation,” she said.

Fortunately, Friedly said, many of her patients have gradually improved and even fully recovered, though researchers have yet to determine how long the disease usually lasts.

For Shangrow, things have started looking up in the past month or so, and she’s now working on applying to graduate school for the fall.

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Durslag said last week that she’s starting to taste most foods again, though some smells, like fresh paint, are still gone.

Banwart took some time off work to drive cross-country last fall, camping and taking short bike rides along the way.

“It was cathartic,” he said. “I was refreshed and, I won’t say energized, but I had a new attitude.”

Some medications, spurts of high-intensity training exercises, and friend and family support also help a lot, he said.

And Friedly herself struggled with ongoing symptoms for nine months after becoming infected early in the pandemic. She’s since fully recovered.

“I do think a lot of our strategies and treatment approaches are able to help change the course of the condition,” she said. “And there’s a lot of hope in the research that’s coming out.”

LONG COVID RESOURCES

What should you do if you think you have long COVID?

UW Medicine’s post-COVID rehabilitation center offers virtual and in-person appointments. Information about how to make an appointment and what symptoms to look for is available at uwmedicine.org.

The Washington State Hospital Association also shares information about patient support groups, including popular online community Survivor Corps, at wsha.org.

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