Cathy Porter holds a modified backpack that allows her to carry a portable oxygen tank for skiing and biking on Feb. 24. Long COVID has affected her ability to maintain healthy blood oxygen levels while exercising, but the former competitive road cyclist is determined to keep doing what she loves.
With a steady gaze and unwavering voice — the confidence of rote memorization — a long-COVID patient can tell you exactly what their body experienced as it was ravaged by an invisible illness.
“Long-haulers” in the Roaring Fork Valley describe tingling skin that itches like lice on their scalp, tinnitus that rings “like thousands of crickets” in their ears, migraines akin to “a sharp needle through the eyeball” and chest pain that feels as if an orange has been shoved under their sternum. They speak of a brain fog that robbed them of their vocabulary — like looking in the refrigerator, staring at a head of lettuce, and not knowing what it’s called — and of a “numbing and debilitating” fatigue that can leave them bedridden for days, an exhaustion so all-consuming that even a sip of water seems out of reach.
The “internal shaking” can feel as if their entire body were quaking from the weight of a heavy barbell; the inflammation and pain as if they were “on fire.” They’re sidelined by nausea, vomiting, diarrhea and abdominal pain; heart arrhythmias turn a short walk into a cardiac event. They struggle to breathe and to get that oxygen into their bloodstream; they struggle to sleep even as they feel completely depleted.
They have told this story before, to doctors and specialists and holistic medicine professionals and family and friends, and they have told it again and again until they could find somebody to believe them — somebody, at least, to listen.
“People don’t want to hear about it,” said Vega Brhely, a 45-year-old cyclist, acupuncturist and bike fitter in Basalt who was “flattened” by long COVID. “And even though this was the main focal point in my life for so long, I had to stop talking about it, because … people just shut down.”
Brhely was the kind of endurance athlete who would train six days a week, sometimes twice a day and sometimes after a 12-hour shift. But after a COVID infection in the fall of 2022, she couldn’t walk a half-mile without taking several breaks; a short, easy bike ride sent her body into overdrive. She had to take months off of work and relied on an emergency grant from the Aspen Community Foundation to cover her rent.
She struggled with extreme fatigue, a spiking heart rate, nervous system dysregulation and brain fog. Yet her bloodwork came back “normal,” and visits to a “circus of specialists” didn’t yield much fruit. Some people attributed her condition to stress; she felt both gaslit and dismissed.
“It was the darkest time in my entire life,” Brhely said.
Being in motion, spending time outdoors — those were the things that brought her joy. Those were the things that gave her purpose and tied her to her community. Without them, Brhely lost her sense of identity. She lost her friends, who connected over bike rides and ski days, and she suddenly felt “unworthy” in a valley where physical achievements are paramount. It’s here, in questions about the psyche, that the long-hauler’s voice starts to waver.
“I don’t know who I am — I don’t know if it’s worth going on,” she thought, and called a friend just so she could have someone to talk to. “They said, ‘Good vibes only,’ and hung up on me.”
She questioned, too, whether she should stay in the Roaring Fork Valley.
“I’ve thought more than once that I should just leave, because if I were anywhere else … I think I would be thriving,” Brhely said.
But Brhely is “no stranger to pushing through discomfort,” and not the type to quit. She sought out new medical research and long-COVID studies. She tried different supplements, a different diet, a new method of calming her nervous system. She bought a pedal-assist e-bike, which helped her get back on the dirt, and because her mental health improved, her physical well being did too. Brhely made progress, then faced setbacks, then progress and setbacks again, until she finally started to feel better last fall.
“I don’t give up,” Brhely said.
In this, at least, she’s not alone.
Cathy Porter demonstrates how she uses a portable oxygen tank for exercise while riding a stationary bike in her Old Snowmass living room on Feb. 24. For strenuous activities like a spin class, Porter will also strap on a medical-grade pulse oximeter so she can monitor her blood oxygen levels.
‘You want to find a smoking gun’
Long COVID is common — “extremely common,” according to Dr. Todd Davenport, a professor and chair of the physical therapy program at the University of the Pacific and chair of the international advocacy organization Long COVID Physio.
In fact, like many infection-associated chronic conditions that Davenport studies, it’s “probably the most common thing you (have) never heard of.”
As of last September, data from the Census Bureau and the Centers for Disease Control and Prevention’s National Center for Health Statistics estimated that between 16.5% and 24% of all adult Coloradans (and between 17.3% and 18.6% of all adult Americans) had ever experienced long COVID. But because of different sampling methods, limited understanding and disparate definitions of the illness, other projections vary widely. One study gave a range of 10% to 26% for adults and 4% for children nationwide as of 2024. Oft-cited (and older) data from the CDC was more conservative, estimating about 6.9% of American adults and 1.3% of children had ever experienced the condition as of 2022.
Translated to raw numbers, that’s still millions of Americans and hundreds of thousands of Coloradans.
Yet “many clinicians will tell you they’ve never seen a patient with long COVID,” Davenport said, “probably because clinical recognition is still in its early stages.”
Patients coined the terms “long COVID” and “long hauler” in the spring of 2020, when the condition was just emerging. And although multiple health agencies sought to create their own definitions, the illness manifests in so many different ways and is still so new that none of those definitions have been widely accepted or endorsed, according to a 2024 report produced by Colorado’s Office of Saving People Money on Health Care.
It wasn’t until last summer that a new definition emerged from the National Academies of Sciences, Engineering and Medicine, or NASEM. Still, it’s full of variables: Long COVID can appear almost immediately after a SARS-CoV-2 infection, or it can have a delayed onset. It can affect one or more organ systems and manifest in nearly 200 different health effects, including symptoms such as fatigue and shortness of breath and the development of lifelong diseases such as diabetes and postural orthostatic tachycardia syndrome, or POTS. Long COVID can be “continuous, relapsing or remitting, or progressive;” it can be mild or severe. And by this definition, it lasts for at least three months. It can also persist for years.
Long COVID can affect anyone, regardless of the severity of the initial infection and regardless of the patient’s race, age or sex, though it’s more prevalent in some populations than in others. It can exacerbate preexisting conditions, but even people who had no prior issues can be affected by the disease. Vaccination against COVID-19 can reduce the risk of developing the illness, but it does not eliminate the chances altogether, according to the Colorado long COVID report.
Long COVID can wreak havoc on a person’s ability to work, go to school, care for themselves and care for others. Patients may retreat from society or nearly drop out altogether because of their symptoms. It can have “a profound emotional and physical impact on patients and their families and caregivers,” according to the NASEM definition. Davenport said this and other chronic conditions can lead to a sense of “betrayal,” as if a person can’t trust their own body.
And although it can be diagnosed on clinical grounds, by an assessment of symptoms and consideration of past COVID infections, there is no single “biomarker” that conclusively proves the presence of long COVID. One clinician said they consider it “lucky” — with emphasis on air quotes — to find something truly amiss, because, at least then they know what to target.
“You want to find a smoking gun,” said Meghan Winokur, a 48-year-old lawyer in Carbondale who has been unable to work since she developed severe long COVID symptoms three years ago. “You know, ‘Aha, we have found the problem, we will give you this pill, and everything will be fine.’”
Mark Pelchat takes out the daily medications he relies on to keep seizures under control in the bathroom of his apartment in Glenwood Springs on Feb. 27. Pelchat was diagnosed with epilepsy after contracting COVID-19 and developing long-COVID symptoms, which include many neurological complications.
But with this illness, that’s just not the case. Physician assistant Jenny Queen works with long-COVID patients at Valley View Hospital’s Lung Center in Glenwood Springs.
“We live in a culture where we want everything to be quick and there has to be an answer, and … there’s not one answer, there’s not one pill,” Queen said. “And I think that can be really hard for patients to hear, but at the same time, I want patients to understand that just because there isn’t one [solution] doesn’t mean that things aren’t going to get better.”
Queen said there are medications that can help patients manage some conditions — such as a heart-rate prescription to address cardiac anomalies, or an inhaler to help with shortness of breath — and there are some techniques to cope with other symptoms. Clinicians and patients have mentioned the importance of “pacing” to navigate chronic fatigue, for instance.
For many long-haulers, Queen said time can be a “great healer.” And although moving to a lower elevation can help patients who are struggling to get enough oxygen, Queen said she won’t force it on a patient; she recognizes the financial, social and familial ties that can bind people to their community.
Many recovery tips come from long-haulers themselves, who swap stores with hundreds of thousands of others on internet forums such as the Facebook group Survivor Corps.
Nikos Hollis is a nurse practitioner at Family Health West in Fruita, which is home to the only ongoing, dedicated long-COVID clinic on the Western Slope and one of only three in the state. He said patients will come in with ideas he has never even heard of — and after some research to determine their merit, those suggestions can become something that the clinic uses “all the time.”
“It’s not just coming from the scientific labs and ivory towers everywhere that’s telling us what to do,” Hollis said. “It’s coming from people who come in with [long COVID]. … It has a very grassroots element.”
And that’s “exciting,” Hollis said, “because we started with almost no understanding of what was going on.” People can still feel “trapped and kind of doomed” about their situation, “overwhelmed and isolated, but Hollis wants them to understand that there is hope for recovery.
“What I tell them regularly is that we’ve seen a lot of people, and almost all of them, we’ve been able to get feeling better and better and better,” Hollis said.
Vega Brhely stands among a collection of bikes that represent both her personal and professional life at her home in Basalt on Feb. 28. She’s the founder of a local women’s cycling nonprofit, a certified bike fitter and a dedicated endurance athlete who was “flattened” by long COVID and faced both progress and setbacks in her recovery.
‘I don’t know how to quit’
Winokur, the former lawyer in Carbondale, is now saddled with medical bills from tests and treatments for long COVID. In the spring of 2022, she developed symptoms such as migraines, memory loss, nausea, vomiting and extreme fatigue. If she had more financial means, she said she’d try “all sorts of crazy stuff” in order to feel more like herself again.
She admits she’s “stubborn,” with both “grit” and “a good sense of humor.”
And like Brhely, the cyclist and acupuncturist in Basalt, Winokur said she has struggled with her sense of self in a community that is built around constant activity. This valley can be “really caring,” Winokur said, but it is also built around an “achievement-based value system” filled with people whose lives are “too full, with not enough rest in them.” She said she used to be one of those “overachievers.”
“It makes it hard to have a healthy identity when you’re living with chronic illness and you’re so severely impaired,” Winokur said.
Now, forced to sit still, Winokur said she has tried to focus on “radical acceptance” of her condition and has sought counseling with support from the HeadQuarters Mental Health Fund. But she hasn’t stopped looking for answers.
“I don’t know how to quit,” she said.
That seems to be a common trait in the Roaring Fork Valley. Jeanne Stough, who manages Aspen Valley Hospital’s cardiopulmonary and oncology rehabilitation programs, said she regularly sees patients who want to “think outside the box” so they can return to the activities they love. The “flip side” of that determination is that some people risk overdoing it and hindering their recovery.
“I usually am assessing my patients [to see] whether they need the whips or the reins in their rehab trajectory,” Stough said. “And most of them will need reins.”
In her view, such ambition is part of the mountain-town “DNA.”
‘This is my life, my parameters’
Cathy Porter, 59, has a 3-inch binder filled with records of every lab result and appointment and piece of medical research that might be relevant to her long-COVID recovery. She has a custom backpack to carry an oxygen tank with her on bike rides, and a neoprene koozie to keep it from freezing when she skins up Buttermilk Mountain. At spin class, she straps on a medical-grade pulse oximeter, so she can push her limits as far as she can and see when it’s time to back off.
“I like being able to show that I don’t care what your issue is: You can find ways around things,” she said.
Porter, retired from a career in banking and bookkeeping, is a former competitive road cyclist who raced in regional, national and international events. But in the summer of 2020, after a bout with COVID, she was barely able to ride up the hill in her Old Snowmass neighborhood.
Although some of her symptoms have dissipated, she still experiences significant dips in her blood oxygen level whenever she exercises. The oxygen tank came at the suggestion of a physician assistant, at a time when Porter was struggling with depression and frustration.
“That has been a godsend,” Porter said. It draws some curious looks and questions on the mountain, but it allows her to get outside and do what she loves. And she’s proud that she has found a way to keep moving; other long-haulers share a similar appreciation for using oxygen while they exercise.
Still, it’s not a perfect solution: The equipment wasn’t exactly designed for endurance athletes, and it doesn’t have the capacity for strenuous all-day endeavors in adverse conditions. Porter said she has felt a “loss” of the overnight backcountry trips and long-distance adventures that she used to take with her friends.
“Of course, I’m a little jealous of people who can do all those things,” Porter said. “But at the same time, … I have to look at it as ‘This is my life, my parameters.’ I can still do it. I’m going to do it.”
She knows, too, that those “parameters” are broader near sea level. Like other long-haulers in the Roaring Fork Valley, Porter recognizes that she may eventually need to move to a lower altitude and leave the community that she has known for nearly 25 years.
‘Back to old habits’
The first confirmed cases of COVID arrived in the valley in early March 2020, followed by almost two years of emergency declarations and mask mandates and containment strategies. People were told to stay home while they were sick, and for a while, they did. Restaurants, schools and special events screened people for illness and ramped up sanitation protocols for those who made it in.
But the rules eventually relaxed, as did the general population.
“People almost immediately went back to old habits,” said Mark Pelchat, a 35-year-old in Glenwood Springs who developed a host of severe complications after he contracted COVID nearly five years ago. He survived cardiac arrest and temporary partial paralysis but now lives with epilepsy and a “huge financial burden” of ongoing medical costs. Pelchat was working banquets for the Little Nell at the time and had to take nine months off work; he later took a different job, as general manager of a rental car agency at the airport, because he is no longer able to withstand a position that is “super physical or has demanding hours.”
Pelchat said he’s now wary of any virus that could make him sick, whether it’s a cold or another bout of COVID. He believes that many people are unaware of the effects that COVID can have on long-term health.
The pandemic was so long and so overwhelming that “people [have] just become immune to hearing about things,” Pelchat said.
And although he doesn’t harbor resentment toward people in good health, he wishes that others would show more precaution. His future is already uncertain, because so much remains unknown about whether his neurological symptoms will stabilize.
“I wish I could go back to the days where I didn’t have health issues,” Pelchat said. “I wish I was on the road where I was getting better. … I mean, gosh, even just being stable and not getting worse or better is better than getting worse, right?”
Brhely, meanwhile, is “still on high alert” and “hypervigilant” about her exposure to viruses that could set her back in her recovery. She has been “super cautious” since the pandemic began, but she feels “validated” in that choice because of how much the virus has impacted her life.
“I think I got tired of trying to convince other people that the pandemic was still happening, that people were still getting COVID,” Brhely said. “But it’s still happening for me.”
‘The thing that I want most’
If you asked Brhely last summer whether she was hopeful about her future, she might not have had a good answer. By that point, she had spent more than 18 months struggling with long COVID and just as much time searching for ways to cope with her condition.
But by the end of fall, almost two years to the date after she first caught COVID, Brhely finally felt strong enough to set ambitious training goals. She signed up for a 545-mile, seven-day charity ride for this summer: the AIDS LifeCycle fundraiser. And one day in late January, she logged 50 miles on a stationary bike.
Then she got diverticulitis — inflammation of the large intestine. It led to an abscess. And within a couple weeks, she was in the hospital for emergency abdominal surgery. She’d be out of work for six weeks. The charity ride was off the table. Yet she felt flooded with encouragement, she wrote in a follow-up email from the hospital.
“I have never felt so loved and supported in my entire life, and I now am on that receiving end of the community support other people in this valley speak so highly of,” Brhely wrote. “What makes it difficult to comprehend, though, is that the same support is not there when someone is diagnosed with long COVID. … Long COVID can be just as debilitating and scary as an abdominal surgery. The only difference is we all know surgical procedures heal.”
So, hope can be a complicated thing. But it won’t stop Brhely from trying.
“I already knew that I was tenacious before, but this is a new level,” Brhely said in an interview. “I now appreciate how hard I am willing to work for the things that I want. And the thing that I want the most is my health back.”
Long-COVID resources
The Roaring Fork Valley nonprofit HeadQuarters offers an online directory of therapists and a Mental Health Fund with grants for therapy and psychiatric assessments. More information at headq.org.
The Aspen Hope Center offers crisis counseling on their 24-hour “Hopeline”: 970-925-5858 for Aspen to Glenwood Springs and 970-945-3728 for New Castle to Parachute. Information about additional mental health programs at aspenhopecenter.org.
The Mayo Clinic offers a post-COVID recovery forum at connect.mayoclinic.org. The Facebook group Survivor Corps is one of several other online communities for long-COVID patients.
Three health care providers in Colorado are known for their specialized clinics for long-COVID care and recovery: The University of Colorado Anschutz Medical Center in Aurora, National Jewish Health in Denver and Family Health West in Fruita. Other medical providers, including the local Aspen Valley Hospital and Valley View Hospital also offer care and rehabilitation programs that can help long-COVID patients manage their symptoms and recover.
A directory of additional providers and resources is available through the Long COVID Alliance (longcovidalliance.org) and through the Colorado Department of Public Health and Environment (cdphe.colorado.gov/covid-19/long-covid).
