For a long time, COVID has puzzled some Washingtonians and scientists; new research underway

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

Banwart was in very good health before falling ill in March 2020. A lover of cycling, he used to bike 40 to 50 miles several times a week. He went hiking and did yoga and Pilates. He worked a lot, taking a finance job at a dairy company based in Seattle.

Then came shortness of breath, body aches, dry cough and fever.

After four months, something else – mainly frequent “brain fog” and severe fatigue – sets in, making it difficult to exercise, sleep, or work a full day.

Now Banwart, one of the millions of people who have developed symptoms of long-term COVID-19, often referred to as “Long COVID,” is faced with a troubling question: “Can I get better? going to?”

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

But some mysteries, such as the condition’s biggest risk factors, still puzzle scientists.

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

Two hundred participants have been involved in several similar local research efforts across the country. But a new, nationwide study funded by the National Institutes of Health is underway, which plans to follow thousands of COVID patients over four years.

“It’s a huge problem,” said Dr. Janna Friedley, who directs UW Medicine’s Post-Covid Recovery Clinic. “We really need more resources at the national level for these types of coordinated clinics for patients with long COVID. There is obviously a huge demand and a huge, unmet need. ,

The UW Medicine clinic is seeing 150 to 200 new patients a month, in addition to about 200 more returning patients, Friedley said. Many considered themselves to be “very healthy” before becoming ill, although some pre-existing symptoms, such as diabetes and high blood pressure, can put people at higher risk of developing long-term symptoms, she said.

And as the clinic fills with new patients, some, like Daisy Skye Shangro, have to wait months to make an appointment. Shangro, 26, tested positive last September, and had to wait until December to see a clinic doctor.

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

treatment approach

Research has shown that more than 200 symptoms can arise after a COVID recovery, Friedley said, although fatigue, cognitive issues, shortness of breath, headache, chest pain and loss of taste and smell can occur. are most common.

“Our approach is very individual and holistic,” she said. “We tend to look at all the symptoms together, not each individual symptom separately.”

There is no 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, such as switching to an anti-inflammatory diet or trying to improve sleep.

“A lot of the symptoms that people experience [are] One relates to inflammation as part of an immune system response,” Friedley said. “So it’s really important to pay attention to inflammation in the diet — long-term COVID patients often can’t digest sugar or alcohol.”

She recommends a “Mediterranean diet,” which doesn’t have strict rules, but is known to be heart-healthy and includes lots of fruits, vegetables, and whole grains. Banwart, who has been trying a more anti-inflammatory diet as the clinic suggests, said she also eats lots of berries and turmeric.

Friedley said physical exercise may also help, depending on a person’s symptoms and supplements. In addition, his clinic offers group sessions with a rehabilitation psychologist to help patients deal with ongoing anxiety, stress, and uncertainty.

Friedley said vaccines have also been shown to be effective in reducing a person’s risk of developing long-term symptoms, although most people who have already been diagnosed with COVID for a long period of time are vaccinated later. There is usually no change in their condition.

In addition, most recent studies point to issues with the response of a person’s immune system rather than the result of the virus running through a person’s body, meaning that long-term COVID patients usually have their acute Those who are not contagious after the disease has passed, she said.

More research is going on.

Last month, UW Medicine, Swedish Health Services and the Institute of 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, Spokesperson-Review reported.

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

“I think it would give us value essentially in numbers – the number of enrollments and their clinical characterizations, and the number of blood tests and the types of abnormalities that we might be able to confirm with larger studies, said Chu, who will be the study’s principal UW Medicine investigator.

Some critics are concerned that the NIH’s recruitment efforts have been slow, although leaders of the initiative have said that 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 has been experiencing post-COVID symptoms for more than two years, joined the research effort as a participant, eager to learn more about her condition.

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

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

Since then, the stink has come and gone, she said. Within the first few weeks of testing positive, the smells of chocolate, wine, and coffee began to return. The smell of fruit quickly returned.

But more months passed and Durslag began to notice a “phantom smell” or parosmia, a condition that distorts a person’s sense of smell and has long become common to people living with COVID.

“I had a bunch of them — burning meat was a staple,” she said. “Then there was a really intense Mr. Clean smell.”

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

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

hope to be fine

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 Shangro, are still waiting to see what their future holds.

“Some days are better than others,” said 26-year-old Shangro. Before becoming ill, she was working as a music teacher in West Seattle. But when a severe bout of dizziness and nausea sent her to the emergency room in January, she and her school decided she would move into a more administrative, remote role for the time being—though it would come with a pay cut. had come.

The financial toll has been hard on him.

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

“Not only did work reduce my income, it cost me a lot to do things that helped me get better,” she said.

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

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

Fortunately, Fridley said, many of her patients have gradually improved and even made a full recovery, although researchers have yet to determine how long the disease usually lasts. moves.

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

Durslag said last week that she is starting to taste most foods again, although some smells, such as fresh paint, are still missing.

Banwart took some time off from work to drive cross-country, camping, and riding small bikes along the way.

“It was catharsis,” he said. “I was refreshed and, I wouldn’t say energetic, but I had a fresh perspective.”

She adds that certain medications, high-intensity training exercises, and the support of friends and family also help a lot.

And after being infected early in the pandemic, Fridley himself struggled with ongoing symptoms for nine months. She has since recovered completely.

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

long COVID resources

What should you do if you think you have had COVID for a long time?

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 here uwmedicine.org,

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

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