Amy Crnecki came down with COVID-19 in November of 2020. The otherwise healthy 38-year-old took time off of her part-time job at a Prior Lake preschool to recover, but after two weeks, she still wasn’t feeling better. “It’s like it didn’t want to leave my body,” she says. She struggled with brain fog, confusion, shortness of breath, and a racing heart. “It felt like an alien had taken over my body, and I didn’t have control over it anymore.”
Sheryl Karvonen, 53, caught the virus while caring for a COVID-19-positive patient as an ICU nurse at Hennepin Healthcare in April of 2020. Practiced in caring for others, Karvonen nursed herself through her illness at home. But like Crnecki, her symptoms lingered long after the infection had passed. “I’ve been sick since then,” she says. “I kept waiting for it to get better, but it never did.”
The statistics on long COVID are unsettling. According to recent studies, 10% to 30% of people who had COVID-19 reported at least one persistent symptom up to six months after being infected.
While recovery can take time following any severe respiratory infection, some with even a mild or moderate case of COVID-19 experience debilitating long-term changes to their health. The wide range of long COVID symptoms—which can include everything from fatigue and shortness of breath to heart inflammation and blood pressure changes—can make the journey back to wellness even more challenging.
But Minnesota health systems are rising to the challenge. Post-COVID recovery clinics have been established at Mayo Clinic, Hennepin Healthcare, M Health Fairview/University of Minnesota Medical School Department of Rehabilitation Medicine, and Allina Health’s Courage Kenny Rehabilitation Institute. With services available at multiple locations across Minnesota and Wisconsin, as well as telehealth options, these clinics are together serving long COVID patients both locally and nationally.
The clinics work with patients like Crnecki and Karvonen, who continue to struggle with symptoms weeks and months after their initial COVID-19 infection. Unfortunately, demand for their services isn’t likely to wane anytime soon. On the bright side, they are seeing encouraging results.
An interdisciplinary approach
The U.S. healthcare system traditionally relies on a hodgepodge of specialists,
each of whom concentrates on a specific organ system. Pulmonologists focus on the lungs, for instance, while cardiologists specialize in the heart. When a patient becomes ill, they’re funneled toward a doctor who specializes in the area of concern. But because so many different organ systems are affected in long COVID, it requires a different approach.
Following a bout of COVID-19, someone may simultaneously experience shortness of breath, anxiety, brain fog, dizzy spells, skin rashes, and profound fatigue. “This highlights the need for a multidisciplinary approach that’s not just focusing on individual symptoms,” says Dr. Greg Vanichkachorn, an occupational and aerospace medicine specialist who leads Mayo Clinic’s COVID Activity Rehabilitation Program (CARP).
All of Minnesota’s post-COVID recovery clinics feature interdisciplinary teams of healthcare workers. Holistic rehabilitation services span physical medicine and rehabilitation, physical and occupational therapy, speech therapy, neuropsychology, pain management, sleep, neurology, nutrition, and mental health support. Depending on their unique needs, each patient works with the set of providers who can best help them get on the road to recovery. The clinics coordinate care, so patients aren’t left navigating a sea of specialists on their own.
At the Hennepin Health Post COVID-19 Recovery Clinic, Karvonen worked with rehabilitation specialists who assigned her exercises to strengthen everything from her pelvic floor muscles to her eyes, which had lost the ability to focus. She also learned chest physiotherapy exercises to help calm her central nervous system.
At the M Health Fairview Adult Post-COVID Clinic, Crnecki worked with cardiac, pulmonary, occupational, and speech therapists for six months. Together, they helped her regain respiratory function, build endurance, and improve her memory and cognition. “It was life changing,” says Crnecki, who estimates she’s regained about 90% of her pre-COVID health since “graduating” from the program in mid-June of 2021. “It helped me get my life back.”
Caring for the mind and body
It’s not just the body that suffers from long COVID. The condition also tends to affect mood and cognition. “Mental health issues are common in the general population right now, but we’re seeing them frequently in post-COVID patients,” says Dr. Tanya Melnik, an internal medicine physician with the M Health Fairview Adult Post-COVID Clinic. “This is an emotional process to go through when you’re used to kicking [butt] and doing it all,” Karvonen says. “It wreaks havoc on your emotional stability.”
Research has found that anxiety, depression, and post-traumatic stress disorder are common among people with long COVID. Melnik says this could be due to a patient’s lingering symptoms, uncertainty about when they’ll improve, trauma from the acute illness, neurological effects of the infection itself, or a combination of all of the above. Regardless, addressing mental health is often a critical component of treating long COVID. Karvonen found support by working with a trauma psychologist at Hennepin Healthcare. “Where would I be without that help?” she wonders.
“We need to have a better appreciation of the connection between the mind and body,” Melnik notes. She adds that some patients resist discussing the mind-body connection, fearing that it suggests they’re somehow inventing or imagining their physical symptoms. Indeed, many long COVID sufferers have encountered dismissal from friends, family, and medical providers who struggle to understand their complex condition and conclude it must be psychosomatic.
“I tell patients, ‘This is not all in your head,’” Melnik says. “‘You’re not imagining things. Just because your brain reacted to the illness, that doesn’t make [your illness] any less valid.’”
Many aspects of long COVID stem from observable, biochemical changes in the body’s tissues (such as scarred lungs) and immune system (such as new antibodies that attack the body itself). Other aspects of long COVID Melnik puts in the category of “functional disorders”—medical conditions that impair normal function but don’t seem to have an identifiable cause.
For instance, some long COVID patients start to use their voice differently as an adaptation to the time they were having trouble breathing. “There’s nothing physically wrong—it’s how you use your body that changes, and it happens without conscious input,” Melnik explains. “We can tap into the primitive level of the brain with exercises and cognitive behavioral therapy and return the voice to normal function.”
Mayo Clinic’s Vanichkachorn found that his background of helping people heal from work-related injuries prepared him well for working with long COVID patients. “Caring for injured workers requires an interdisciplinary approach and an understanding of all the psychosocial factors,” he notes. Illness doesn’t occur in a vacuum—our work, relationships, support systems, finances, and self-image all affect how we experience a health event. And having tools to address those areas can be an important pillar of healing. “Occupational medicine doctors are used to navigating and synthesizing all those factors while helping people with their conditions.”
Often, it starts with simply listening and validating the patient’s experience. “People come in [to the clinic] feeling abandoned, guilty, and depressed,” Vanichkachorn says. “We let them know we’ve seen this in hundreds of other patients and that they’re not crazy. That’s one of the first things they’re looking for.”
Crnecki credits a big part of her healing to weekly e-visits with her therapist, as well as seeing a psychologist and getting on medication to support her mental health. “Your mental and emotional health has a big impact on your physical health,” she notes. And simply receiving validation for her experience from doctors and fellow long-haulers at the M Health Fairview Adult Post-COVID Clinic gave her relief. “With camaraderie came hope and comfort, realizing that I wasn’t crazy and this was happening to other people,” she says.
Strength in numbers
At Hennepin Healthcare, once long COVID patients have been stabilized through the Post-COVID-19 Recovery Clinic, some go on to participate in group medical visits led by integrative and functional physician Dr. Kara Parker. Parker designed a program of group sessions focused on the fundamentals of post-COVID recovery from a functional-medicine perspective. Functional medicine emphasizes finding the root cause of illness, taking into account factors such as nutrition, stress, toxins, genetics, and the microbiome.
Topics covered in Parker’s long COVID group sessions include sleep, diet, exercise, reducing stress, and restoring mitochondrial function. Damaged mitochondria—the powerhouses of our cells responsible for creating energy—have been implicated in long COVID, as well as other conditions such as chronic fatigue syndrome. Functional medicine has long provided a toolkit for restoring mitochondrial health, starting with approaches that emphasize diet and nutrition.
The group visits allow participants to help one another figure out how to incorporate lifestyle changes and share support on the journey toward recovery. “Group members report how much it helps being with peers who understand what they’re going through,” Parker says. “It’s lonely being tired and disabled. It helps to be able to look around at people who have different flavors of the same symptoms and can offer shared understanding and support.”
While many long-haulers have found camaraderie in online forums dedicated to long COVID, Karvonen notes that finding group support in a structured setting geared toward healing can be even more useful. “I’m in an online long COVID group, and I have to be careful not to listen to too much [about what others are experiencing],” she says. “Some days you want to be in misery with someone else, but you’re already in a [difficult] situation, so you don’t want to absorb too much of that.”
Still, many of the earliest improvements Parker sees in group members come from the psychological comfort of not feeling so alone. “These people are feeling so much despair. My hope is we get them to a place where they accept where they’re at, because in that place of acceptance is where you can really heal and move forward.”
Changing care for the better
If there is any silver lining to the terrible toll of long COVID, it may be that chronic conditions that have long been dismissed, understudied, and undertreated by the healthcare system will finally get the attention (and funding) they need. Advances in understanding mitochondrial restoration, for instance, stand to benefit not just long COVID sufferers but also people with chronic fatigue syndrome and chronic Lyme disease.
Melnik notes that anosmia—the loss of taste and smell reported by many with COVID-19—has been described following other viral infections, as well, but physicians have never known how to treat it. “Now with more research, I hope we’ll have more answers,” she says. “The field is realizing that infections can have a lasting impact, and we need to do something about how people find financial, social, and medical support.”
Expanding access to functional approaches to care also has the potential to change patients’ experience for the better. “People come to us so tired of hearing ‘We don’t know what’s wrong with you; there’s nothing we can do,’” Parker says. “I tell them, ‘There’s no guarantee that we can restore function, but we’re going to aim at that.’”
And the multidisciplinary models employed at post-COVID clinics across the country could give a leading edge to more holistic, less siloed patient care in general. “It’s a different model, but it’s what we need for chronic conditions going forward,” Vanichkachorn says. “Even for someone with high blood pressure, it’s easy to say, ‘Let’s increase this medication,’ but if they don’t have resources or access to healthy foods, those factors need to be juggled, as well.”
Moving in the right direction
In the meantime, Vanichkachorn, Melnik, and Parker all report seeing improvements in their long COVID patients. Access remains a challenge for many, however, as demand for care outstrips capacity and patients with fewer resources are underrepresented. Some bounce back to their baseline within a month or two, while others find better tools to manage what could be a long-term condition.
Vanichkachorn and Melnik both stress the importance of seeking care sooner than later if symptoms linger after COVID-19 infection. Those who show the quickest and best improvements tend to be those who get help early.
Karvonen, who got sick with COVID-19 when there was no understanding of long COVID—let alone treatment strategies—wishes she had had earlier access to the tools she has since received at Hennepin Healthcare’s Post-COVID Recovery Clinic. “If you can get on the right track and get the information that’s now available, I don’t know if the outcome will be different, but I sure wish I would have known this stuff earlier,” she says.
One of Melnik’s long COVID patients, a man in his 70s who was intubated for several days with pneumonia, was recently discharged from the post-COVID clinic and is back to doing yard work. Another who had scaled back at work to engage in rehab and manage her chronic fatigue has recently noticed that she’s not getting as wiped out. She’s starting to talk about increasing her hours again at work.
“We are seeing improvements,” Melnik says. “We try to find a sweet spot for each person, where it helps them move forward, but not to the point where they crash and burn. You really need a coach to help you figure it out.”
Crnecki’s advice to those who find themselves struggling with lingering symptoms after a COVID-19 infection is simple: “Life is short. Help exists. Go get it.”