Estimated read time: 4-5 minutes
SALT LAKE CITY — Crystal Pedersen said she got COVID-19 as the world was shutting down in March 2020, a few days after her husband took ill.
A month or two later, she was very fatigued — "Like dragging your body through life ... you're literally hauling each leg to move and forgetting everything."
She brought her symptoms to her primary care doctor, and said it overwhelmed him so she would bring one symptom to him each month. Pedersen said no one knew what was happening.
Eventually she learned about long COVID and she said it "absolutely" fit. She was at the University of Utah Health's Long COVID Clinic shortly after it opened.
Pedersen said at a press conference on Thursday her goal is to share her story so that others can find the resources that have helped her.
Jeanette Brown, medical director for the long COVID clinic, said since July 2021 it has treated 3,000 patients. Of those, they have seen two female patients in the clinic for every one male patient, which she said could give them a clue into what causes someone to develop long COVID.
New patients are still coming in. Brown said more recently they haven't seen as many people with difficulty smelling or tasting but they are seeing the same fatigue, memory issues and sleep disorders. One of the more common symptoms is post-exertion malaise, meaning intense exercise or emotional stress can lead to lasting exhaustion.
"We have to really tailor things towards each patient's individual symptoms," Brown said.
She said there is no diagnostic tool yet for long COVID. Instead, they rule out other things that could cause the symptoms the patients are having.
Because of funding from Utah allowing them to use more telemedicine and treat those without insurance, Brown said about half of the clinic's patients are from rural or underserved areas in Utah.
"This isn't just an urban access disease, this is something that affects a lot of people," she said.
Although patients have a wide age range of 18 to 80, most patients are middle-aged and have had to cut back on caring for family and contributing to the community. She said about 40% of patients have reported needing to work reduced hours, and about 20% have reported they can no longer work.
Brown said contracting another variant of COVID can lead to a relapse for many of their patients.
New patients have an hourlong visit at the clinic to go over their symptoms, and then receive treatment plans that can include referrals for speech therapy, physical therapy or neurology care along with at-home steps to help manage their symptoms. Some patients are in a "crash cycle" of being fatigued, and the clinic can help them pull out of the cycle.
Pedersen said the clinic has helped her develop strategies for remembering things and balancing her energy. But more importantly, the clinic has validated her; now she's in a place where people believe her when she explains what she is going through.
"The feeling that you have people in your corner that are actually absolutely working to help you get better," she said is something the clinic has given her.
And Pedersen still has a ways to go. She said she was in great shape in 2019 but now she does grocery pickup instead of shopping. While she used to enjoy reading, now the words "swim around the page" and it can take weeks to read a short book. She also has anxiety in large spaces and feels a need to rest after doing a task for just 10 minutes.
Pedersen said maybe in five years she will get to the point where she can walk a flat half-mile hike.
"That is my personal goal, is to hear the crunch of dirt under my feet, to take a very even hike," she said.
Pedersen encouraged people to realize this is more widespread than they think, and that those working through long COVID are still themselves, they haven't changed.
"I know that I'll personally never be 100% again, but because I have a brilliant group of specialists that have my back, and I am blessed enough to have a family ... that cares and adapts to my needs, I believe I can regain some portion of my old faculties again," she said.
Brown said studies in the United Kingdom have suggested that about 85% of long COVID patients improve while 15% are stuck. She said her "amazing team" of researchers and her patient population helps her stay optimistic. Depending on the person, sometimes the goal is managing symptoms and sometimes the goal is recovery.
Chronic fatigue and some other symptoms of long COVID were seen before the COVID-19 pandemic after a viral infection, Brown said, but without a large number of people at the same time, there wasn't much research done into their care. Now, with a lot of patients at the same time, they have been able to make more strides.
"We'll be here as long as patients need us to be here," Brown said.
She invited providers who have questions to contact the clinic, which provides education sessions to people around the world.
