RICHMOND, Va. -- John Bolecek's family loves being outdoors.
"I was a huge cyclist, I built my career off of it," Bolecek said. "I mean, I love to be interactive with my kids too. We would ride bikes down to Belle Isle to the kid's mountain bike skills course all the time."
Bolecek, who used to work for the Virginia Department of Transportation as a planner for pedestrian and cyclist projects, moved to Richmond's Oregon Hill neighborhood to be able to ride his bike close to the James River and to his job downtown.
Unfortunately, it's something he doesn't do anymore.
"It was a joy to be able to teach my youngest son how to ride his bike, and it's a tragedy to me that I can't be active with my children right now," he explained.
About two years ago, Bolecek's family was infected with COVID-19. He explained he was vaccinated and boosted at the time, only suffered a mild infection, and expected to eventually get over the infection.
He never did.
"I started waking up feeling like I hadn't gone to sleep at all," he explained. "So I would sleep eight solid hours, and then wake up and I was like, 'I feel horrible right now. And that feeling has never gone away."
Bolecek said he felt as if he was progressively getting weaker. In April 2022, his symptoms worsened.
"My body just slowly shut down. I got so weak that I could barely walk from by bed to the bathroom. I couldn't sleep, I couldn't think," Bolecek explained. "And that permanently lowered my baseline."
His doctors told him the symptoms were brought on by his COVID infection.
"It's been very challenging getting medical care," he explained. "There's no specialist for Long COVID. My symptoms exactly match what's called myalgic encephalomyelitis, and there's very, very few specialists for that, in this country."
Bolecek explained the process of through research studies, even traveling out of state to be seen by researchers.
One research study found he had the cardiovascular capacity to take in oxygen at the rate of a 94-year-old.
Now, he has to track how far he walks, trying not to overexert himself.
"Some of the most nervous I've been, is a situation where there's nowhere to sit or I have to go somewhere, and I don't know how long it is," he explained.
Bolecek is not alone. Roughly one in eight people who are infected with COVID-19 will likely experience a Long COVID symptom. Over 200 symptoms have been reported and researched, some of the most common including, fatigue, a linger cough, shortness of breath, and loss of taste or smell.
“Why are some people getting them? Why are some people recovering quickly? What is about these, this individual, where the symptoms are persisting? Or is it something about a certain population of people? And so we’re really digging deeply into that question," Dr. Patricia Kinser, the Assistant Dean of Research at VCU's School of Nursing.
VCU is conducting its own studies on Long COVID symptoms, including the RECOVERkids research study focusing on COVID-19's impacts on children.
"It's heartbreaking. A lot of families are at their wit's end about how to get help for these children," Kinser said.
Kinser and Dr. Amy Salisbury, the Associate Dean for Research and a Professor at VCU's School of Nursing, said more participants are needed for research studies, to help not only better understand Long COVID, but other viruses that can impact those infected in a similar manner.
"I think that’s what it’s going to take, is people to keep interested, keep asking these questions, so that the lawmakers and people who are in that position of making decisions know that this is real, and that this is really impacting so many people," Salisbury said.
Bolecek traveled to Washington, D.C. alongside Senator Tim Kaine, who's experienced Long COVID, and others impacted, vouching for permanent funding for national research.
“I’ve been dealing with long COVID symptoms for about 4 years now," Senator Tim Kaine said Wednesday. "I'm going to be battling for it in the appropriations bill, I have a couple pieces of Long COVID legislation that are bi-partisan."
“That's why we need treatment is because there's, there's millions of people suffering. And, you know, it's a strain on the economy, it's a strain on families. And the sooner we can get people, you know, treatment that improves their quality of life, you know, the better it will be for everyone," Bolecek said.
“I think that’s what it’s going to take, is people to keep interested, keep asking these questions, so that the lawmakers and people who are in that position of making decisions know that this is real, and that this is really impacting so many people," Salisbury said.
People interested in joining VCU's RECOVERkids program can find more information here.
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