ST. GEORGE — St. George resident Cheryl Young got COVID-19 more than a year ago, but she still lives with it every day.
She describes her brain as sometimes being in a fog. Her stamina is almost always like a gas tank with the needle getting close to “E.” Her blood pressure now has to be constantly monitored and she has to see a doctor monthly.
Since Aug. 27, 2020, when she was first diagnosed with COVID-19, Young has never been able to go back to normal. In her mind, she is still the active, tireless person she was 16 months ago. Her body says otherwise.
And she’s not alone. Young is one of 11.1 million Americans and 100,930 Utahns according to the American Academy of Physical Medicine and Rehabilitation who have continued to experience debilitating symptoms six months or more after having COVID-19.
“Our personalities are totally intact. We’re still the same person,” Young said. “Our bodies are completely different.”
How those bodies are different depends on each person who has had COVID-19. Dr. Brayden Yellman, based at Salt Lake City’s Bateman Horne Center, said there are as many as 50 symptoms.
While, through vaccines and treatments, the medical world has figured out how to quell the virus that causes COVID-19, it is still trying to figure out why some people who have had COVID continue to experience effects long after its gone.
However, Yellman, who has studied the condition extensively and is considered one of the top experts in the state and the nation, said there is a commonality in those who have faced symptoms long after COVID is gone: In almost all circumstances, they had mild COVID with little to no hospitalization, were younger than 50, led active lifestyles and went right back into those active lifestyles as soon as their 14-day quarantine period was over.
“A risk factor for this is these are people who go, go, go,” Yellman said. “I’ve not met a single lazy person among my patients. These aren’t couch potatoes.”
Medical professionals like Yellman call this condition a form of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The Associated Press, in its stylebooks provided to journalists to maintain consistent prose, call it long COVID-19. But those who deal with it use a term previously reserved for truckers who may spend days pulling the weight of cargo across the country.
They call themselves long-haulers.
Not alone for the long haul
At the very beginning of the pandemic, Lisa O’Brien thought she was alone. At first, COVID didn’t seem to do much at all to her, but weeks later she said she was having sleepless nights, with her heart rate fluctuating from as high as 205 to as low as 35. She had an unstopping ringing in her ears and couldn’t perform the mail-carrying duties she had before so easily in the Salt Lake City suburb of Roy.
“I still had something hanging around, but I’m like, ‘I need to build my strength back up,’” O’Brien said. “Some days I walked 10,000 steps and that was when I started having like autonomic dysfunction, sorta like a malfunction.”
Doctors had no answers for her, so she turned to Facebook and created the Utah COVID-19 Long Haulers group in June 2020.
And she learned she was not alone.
Since then, O’Brien has become one of the leading advocates for those with long COVID in Utah.
“When I started, nobody would listen to me. There’s still so many people that still don’t even know that this exists, they don’t know what’s going on. Their body’s not behaving like it should. It was crazy going from somebody that hiked all the time and I walked 12 miles like a million times. So it’s very life-changing,” O’Brien said. “And then the people that do know don’t know where to go for the resources. If doctors were more educated, there would be more resources.”
Tanya Hovey of Kaysville, who had COVID-19 in April 2020, used to be extremely active. Now, she said just walking 300 steps makes her crash for days that feel like a 24/7 panic attack. The illness has forced her to close a lucrative photography business.
For that reason, Hovey said nobody she knows thinks she’s faking it.
“I haven’t had anyone blatantly come out and say they don’t believe me, maybe cause they saw who I was before,” Hovey said. “I was so active and a go-getter and overachiever to where I can barely walk or stand.”
Ruslana Parker of Salt Lake City also was unable to work anymore after she got COVID-19 in March 2020, but her job is one that right now needs all the people it can get. She is a nurse practitioner.
She still helps other doctors and nurses but said she cannot actively work more than four hours without needing to have a prolonged period of rest.
“If you look at me, you don’t think I’m severely sick. I’m not at the point that I’m in the wheelchair, but I’m not well enough to work at my job,” said Parker, who said she herself had to go to 20 specialists before being diagnosed with long COVID. “I had to quit my job because I can not tolerate it for more than a couple hours or so.”
Ways to avoid getting long COVID-19
Amy Cuddeback was the personification of the active Utahn. She ran marathons and was a chronic hiker.
That was until October 2020 when she got COVID-19. Now, she constantly sits in a wheelchair, and that’s when she’s able to go out.
“You only see us on our good days. You don’t see us on our bad days,” Cuddeback, of Salem, Utah, said. “We can’t get out of our beds on our bad days.”
O’Brien said 1 in 5 of those in her Utah Facebook group haven’t been able to return to work.
And while medical experts are still baffled by what exactly is behind long COVID-19, they now have a better understanding of risk factors that can help people avoid it. The biggest one is not engaging in strenuous activity right after having COVID-19.
Dr. Yellman said what medical professionals didn’t know until recently was that the medical – and characteristically American – tendency to fight back and use physical therapy to get right back to “normal” after having a mild case of COVID is actually the worst thing to do.
This understanding will be especially important as the omicron strain, which appears to be more contagious but possibly less severe, becomes prevalent.
“When people try to fight this, that’s when they enter their biggest holes. That’s so different than what we’re used to in medicine,” Yellman said. “Providers need to support patients through time off from work. Some patients who have these symptoms and do that get much of their function back.”
At this point, Cuddeback said she wishes she had known to take the advice a year ago. Because she said the advice she got has left her incapacitated.
“I had a neurologist that told me I needed to fight with all I had to be normal or else I would end up with a wheelchair. And so the first four months of this, I was hiking and I was trying to do my regular things with my kids and I was running – I even ran on the treadmill and it just about killed me, but I did it,” said Cuddeback, who’s now at the point where she is not only confined to a wheelchair but she said her cognitive abilities keep her from being able to drive.
“We’ve kind of learned it should have been the opposite. The word we’ve tried to get out to people because a lot of times they’re like, ‘I’m just going to push through. I’m going to exercise more. I feel better if I do this.’ And it’s like, ‘No,’” Cuddeback said. “I honestly think that one of the reasons I’m functioning at the point I am is because I did kind of pull it back at a certain point.”
St. George News has spoken with several others locally who had mild cases of COVID-19 in the early portion of the pandemic and got right back into running or bike riding as soon as their quarantine was over and now experience either the signs of long COVID or have been diagnosed with it.
The symptoms can also get worse after minimal physical or mental exertion – a state known as post-exertional malaise (PEM).
“Working through PEM can cause worse things. You have to surrender to it,” Yellman said, acknowledging that doing so is a culture shock that goes against the typical “don’t give in” pioneer spirit of Utahns. “Looking at this as something we push through is the wrong thing to do with long COVID.”
Telling an active Southern Utahn not to run the extra mile, hike the steeper trail or endure a personal triathlon may be a tough proposition – especially when evidence suggests young, active people who have mild COVID-19 are those most likely to end up getting long COVID.
Yellman said besides being young and active and having mild COVID-19, other risk factors for getting long COVID-19 include having severe allergies, being an asthma sufferer or having hypermobility – also known as being double-jointed.
“If you could do party tricks when you were younger, higher risk for long COVID,” Yellman said.
‘It’s not right’
For those in Southern Utah with long COVID, there is an additional struggle: getting help locally.
That fact brings JoLynne Nay to tears.
Nay is an early childhood education facilitator at Southern Utah University central Head Start office in Cedar City, but commutes from Monroe, which is about 50 miles northeast of Beaver.
But the commute she has to get treatment for her long COVID is much longer. The only specialized clinics dealing with those with long COVID-19 are in the Salt Lake City area. There are none south of Provo and the other closest COVID clinics are in Southern California, according to Becker’s Hospital Review.
“We need something in Southern Utah. People need a place to go,” Nay said through tears. “People shouldn’t have to drive four hours. It’s not right.”
Dr. Michelle Hofman, deputy director of the Utah Department of Health, told St. George News she hasn’t heard discussions on getting more resources or clinics for long COVID patients in Southern Utah.
“And that’s a really good question,” Hofman said. “We’re still learning a lot about it, and it needs specialty care. I would hope that our systems are taking advantage of our telehealth capabilities.”
A study by the National Institutes of Health, however, said that ultimately telehealth shouldn’t be looked at as a permanent substitute for a hands-on medical examination.
When Young sought help for her long COVID-19 symptoms, her wait for any kind of help proved to be long.
Because she was new to the St. George area at the time she was first diagnosed with COVID, she didn’t have a regular doctor. She called the state’s Coronavirus Information Line and when she asked where the nearest doctor who specialized in long COVID-19 was, she was told: American Fork – 271 miles north.
While Young was able to get some help remotely over telehealth, she said she still needed an in-person examination, which took some three months to get a local appointment.
“I ended up completely forgetting that I had an appointment cause I was so sick and had brain fog. And, and then when I called to reschedule and apologize, I was given an appointment for 45 days later,” Young said.
And to her frustration, she said the doctor was unable to help.
“He said I had a cold and maybe some other symptoms and was just treating me for a cold and allergies,” Young said. “The symptoms that I had were they didn’t go in line with the cold. There were many more things that needed to be treated.”
Young got more help at a health clinic in Arizona before ultimately getting a spot at the Bateman Horne Center four hours away after a long period on a waiting list.
For now, according to the Utah Department of Health, there are two main clinics people in Southern Utah can turn to for treatment for long COVID-19: The University of Utah Long-Hauler Clinic in Salt Lake City and the Bateman Horne Center in Salt Lake Regional Medical Center.
Neither is anywhere near Southern Utah and have waiting lists in the hundreds.
Don’t blame the doctors
The long COVID-19 patients St. George News talked to all shared in Young’s frustration of finding a doctor who could help them. They said it wasn’t as much doctors not believing they were actually going through something; but rather, doctors don’t quite know how to deal with it.
And Yellman said you can’t blame the doctors for that, adding that many doctors have never even heard of myalgic encephalomyelitis/chronic fatigue syndrome.
“I spent nine years in medical training. I was not once educated on this syndrome,” Yellman said. “When you go into your doctors and they don’t know what to do, it’s not their fault. They’re not taught what to do.”
The CDC describes ME/CFS as a “serious, long-term illness that affects many body systems.” At the least, it leaves people unable to get out of bed, trouble thinking and concentrating, and with severe pain in the joints. It can also cause chronic shortness of breath, irregular heartbeat, throat and digestive issues, and sensitivities to light, noise or certain odors.
And there is no cure.
The CDC provides a handout of what it says are the right questions and information to provide doctors for those who suspect they might have ME/CFS.
Yellman said there is also a test that anyone can take at home to determine if they may have ME/CFS that was actually developed by NASA to determine the ability of astronauts to stand after prolonged weightlessness.
Known as the NASA Lean Test, people with a home blood pressure and heartbeat monitor first lay down barefoot for five to 10 minutes and then record their blood pressure and pulse twice in two minutes. They then stand for 10 minutes against a wall with only the shoulder blades touching and bare feet 6 inches from the wall, recording blood pressure and heart rate every minute.
“You can do this yourself and take it to a doctor,” Yellman said.
The form can be downloaded at this link.
Not every person who has ME/CFS has had COVID, but Yellman said just about every patient he has seen with long COVID has ME/CFS. And Yellman adds that 40% of people with ME/CFS can develop an even worse syndrome called postural orthostatic tachycardia syndrome (POTS).
In a review of 5,412 separate studies, the Rowan University School of Osteopathic Medicine in New Jersey determined in April that there is an overlap between long COVID-19 and ME/CFS.
Complicating matters is with as many as 50 possible symptoms, it is easy for doctors – especially the many without training on ME/CFS – to misdiagnose long COVID-19 as something else. In fact, many of the symptoms are similar to those seen in patients with anxiety and/or panic attacks.
Hovey said her 10-year-old daughter is now also dealing with long COVID-19. And like many with the debilitating aftereffects of COVID, she was initially misdiagnosed.
“She got tested in August and they diagnosed her with anxiety,” Hovey said. “They wanted to take her to a psychologist.”
According to Utah Department of Health statistics, children with COVID-19 are much more likely to have mild symptoms or no symptoms at all, which happen to be the signs of increased risk of long COVID-19.
Yellman said long COVID-19 is showing up much more in children in the past few months. He said it is not the same as multisystem inflammatory syndrome (MIS-C), a separate condition with damaged internal organs that has become prevalent in children who have had COVID-19.
St. George News has also heard from several other parents that preferred to remain anonymous who report their children post-COVID are experiencing ME/CFS, long COVID-19 symptoms.
Nay said as much as she and her fellow group members have had their lives changed while they’re in their 40s and 50s, there are longer consequences for children whose lives have barely begun.
“It’s distressing we’re starting to see children with this,” Nay said. “I just think it’s like Russian roulette. You’re willing to play Russian roulette with your children’s lives just because you can’t have them wear a mask or just because you can’t take this seriously. I mean, I’m not willing to play Russian roulette with my family.”
Nay said that’s a reason to do as much as possible to avoid getting COVID-19 in the first place. She said she derides those who say that COVID isn’t a big deal and you don’t die from it. That is especially notable with a new omicron strain that the CDC now says appears to be as contagious as measles, but not as prone for hospitalizations or more than mild symptoms.
“I’ve worked the majority of the time that I’ve had long COVID for the last 16, 17 months. I make it through the first part of the week, but my weekend is spent in bed and on the couch and laying down. That’s my life. Is that right?” Nay said.
She added people aren’t talking about the more than 100,000 in Utah who have not been able to return to their normal lives long after COVID is gone. To her, they may be alive, but they’re not living.
“I feel blessed that I didn’t die. But our lives are changed forever. So that’s a tragedy at the same time, as much as a death,” Nay said. “In a way, we kind of did die from who we were. We’re not the same people.”
COVID-19 information resources
St. George News has made every effort to ensure the information in this story is accurate at the time it was written. However, as the situation and science surrounding the coronavirus continues to evolve, it’s possible that some data has changed.
Check the resources below for up-to-date information and resources.
- Centers for Disease Control and Prevention
- World Health Organization
- Utah Department of Health
- Safe Southern Utah
- Información sobre coronavirus en español
- Intermountain Healthcare
- To Donate and Volunteer to Help
- Utah COVID-19 Long Haulers
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