SALT LAKE CITY (ABC4 News) – Months after feeling like they had nowhere to turn for treatment, Utah’s group of COVID-19 long haulers are partnering up with the University of Utah Health to raise money for new research.

It was the weekend of July 4th when 28-year-old Tanner Olson thought he was just showing signs of the common cold. 

“Normally, I’m a huge runner. I run 60 to 70 miles a week. So I just kept running that first week, thinking I could just run my way through every cold like I’ve done in my life. I thought I was through at the end of the first week until my heart rate came up while I was running and it never came back down,” he said.

Olson got tested for COVID-19 and went to InstaCare after waiting a few days for the results.

“The symptoms between the first week and the week after that was a night and day difference. All of a sudden, I was having brain fog and heart rate issues and all kinds of crazy things,” he said. “This is one of the hardest things I’ve ever been through. I’ve never had major sickness in my life and so this hit me like a train. Ever since I haven’t run.”

Since then, Olson developed dysautonomia. According to the Cleveland Clinic, dysautonomia is a group of medical conditions caused by problems with the autonomic nervous system (ANS). This part of your nervous system controls involuntary body functions like your heartbeat, breathing, and digestion. When the ANS doesn’t work, as it should, it can cause heart and blood pressure problems, trouble breathing, and loss of bladder control.

“Basically when I stand up, my heart rate will shoot up well into the 100s, 120s. The first week, it was hitting the 140s, 160s range from just standing. If I was walking, it would go even higher,” he said. “There were times I was walking, I felt like I was drunk and stumbling. It’s been five months since I’ve been able to drink coffee or beer because of the high heart rate.”

Olson is one of possibly thousands of Utah “COVID-19 long haulers” who are suffering long-term symptoms weeks or months after recovering from the virus. He found community support and resources through a new Facebook group called the Utah COVID-19 Long Haulers, led by Lisa O’Brien.

“It’s a phenomenal resource just to have other people who can empathize with what you’re going through. People talk about their symptoms and share what’s helped them get through it. It’s just honestly nice to know that you’re not in the fight alone.” said Olson.

O’Brien’s “long hauler” journey dates back to March. She’s experienced a multitude of long-term symptoms such as blood clots, tachycardia, blurry vision, nausea, fatigue, insomnia, and random oxygen drops.

RELATED: Nowhere to turn: Patients seeking care for lingering COVID-19 symptoms

She formed the online support group in June, feeling like there was nowhere to turn at the time. She said she faced some skepticism from multiple doctors, who’ve dismissed her symptoms as anxiety. She said one doctor even asked her if she knew about the “power of suggestion.”

Now, the Facebook group has more than a thousand members, with half of that number joining in just the last month. Interesting enough, about 80 person of the members are women with the average age range being in the 40s.

In the past few months, O’Brien and her group dedicated their time to advocacy, awareness, and education. Most recently, they partnered with doctors at the Bateman Horne Center, worked with doctors at Intermountain who went on to teach general practitioners about the symptoms they’re experiencing and presented to more than 100 doctors at the University of Utah’s Project Echo webinar.

“One of the things that we don’t know is what are the causes of these illnesses? Are they from the virus itself? Are they from the immune system’s response to the virus?” said Jeanette Brown, Assistant Professor for the Department of Internal Medicine for the University of Utah Health. “We have not found a commonality. We’ve seen these symptoms in all age groups. It’s surprising that many of these patients had what we consider relatively mild initial symptoms.”

She went on to say, “One of the things we’re looking forward to doing is having a biorepository, which is basically a collection of samples such as blood, sputum, or saliva to be able to go to when a researcher or doctor has an idea and shorten the amount of time it takes to do the investigation to get better answers.”

O’Brien’s group is now partnering with the University of Utah to raise money for research on COVID-19 long haulers. As of Tuesday, they’ve reached more than $4,300 out of their $10,000 goal.

“You may say why don’t we do it ourselves? We’re pretty well-funded to look at the acute condition of COVID-19. But what we do need right now is the pilot data. You almost need data to get more data. At this point, we’re at such an infancy that we really need the help of people like Tanner and Lisa, folks in the audience who have these symptoms to be able to provide a registry to understand what their symptoms are,” said John Inadomi, Chair for the Department of Internal Medicine at the University of Utah Health.

He added, “By getting some of this data early and let’s say getting some tissue or blood to be able to understand what’s going on biologically, that would really help us. Using that data, we can go to much bigger institutions to get more permanent funding for our research.”

Brown said they are in the preliminary phases of putting together a post-COVID clinic to follow patients, both for treatment and provide them access to the latest research and treatment.

Inadomi emphasized that COVID-19 is a serious illness and can impact patients on a multitude of life-changing levels.

“COVID-19 is deadly. If it isn’t deadly, you can see now the long-term consequences for people who survive. It’s highly preventable. What you do protects others. What others do protect you. Mask up, Utah. Make sure you socially connect but physically distance. You got to wash your hands and make sure that you take care of yourselves and the people around you,” he said.

To join the Utah COVID-19 Long Haulers Facebook group, click here.

To donate for support with research on COVID-19 long haulers, click here.

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