Jane Storie always considered herself to be a “sunshiny” person. But then, in October 2020, she became ill with COVID-19. Nearly 18 months later, she’s still plagued by debilitating symptoms.
Trouble breathing. Tight and achy muscles. Anxiety and depression. Panic attacks. Brain fog.
Her cognitive impairment, especially, has made it challenging to work with her husband on the family’s small business ventures.
“I have a college degree, but I have a hard time helping my second grader with his math or following a recipe,” said Storie, a 38-year-old mother of two young children from Hermitage, Tennessee. “I might totally forget I got something going; forget to turn off the stove.”
Storie is not alone. An estimated 30% of people experience “long-haul” COVID, what the medical experts call post-acute sequelae of COVID-19 (PASC), months after recovering from the initial infection.
But there is reason for optimism, said Sara Martin, MD, medical director of the Adult Post-Acute COVID Clinic at Vanderbilt University Medical Center. New studies are revealing what may cause these symptoms, and treatments such as physical therapy and cognitive training are often effective in relieving them.
Research also suggests that vaccination not only protects against COVID-19 but may reduce the risk of PASC. Most patients seen in the VUMC clinic since it opened last year were not vaccinated before they got COVID-19. They are encouraged to do so now to keep from being infected again.
“I’m hopeful that as more people get vaccinated, we will see a decline in symptoms over the next year,” said Sapna Kripalani, MD, assistant professor of Medicine, who joined Martin in a discussion of post-acute COVID March 3 during Medicine Grand Rounds.
There is some evidence PASC may be caused by out-of-control immune and inflammatory responses to infection by the COVID-19 virus, SARS-CoV-2. Other studies point to the virus as the likely culprit because it has been found in tissues throughout the body, including the brain.
Whatever the cause, it’s clear that post-acute COVID has reached epidemic proportions, said James Jackson, PsyD, research professor of Medicine and lead psychologist for the Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center at VUMC.
Eighty million cases of COVID-19 have been reported in the United States to date. If the estimates are correct, as many as 24 million survivors of the greatest pandemic in a century have experienced lingering neurological symptoms.
That would make “neuro” post-acute COVID the nation’s third most prevalent neurological disorder, behind tension and migraine headaches, and ahead of stroke.
Jackson worries that the sheer volume of PASC cases is overwhelming the outpatient mental health system and the government’s ability to process disability claims. Patients “feel like they’re running into closed doors,” he said.
To help fill the gap, Jackson, Amy Kiehl, MA, a licensed professional counselor, and their CIBS center colleagues lead five online peer support groups for patients and families. Each week, 50 to 60 people participate. Forty percent live outside Tennessee, some from as far away as the United Kingdom.
“Increasingly we’re getting referrals from physicians around the country who know about the work we’re doing and send their patients to us,” Jackson said. “If we kept adding groups, we would keep filling groups. That’s how great the need is.”
Family groups are important. “The impact of long COVID on families is consistently underappreciated,” he said. “When your husband or wife, mother, father, whomever — when their life is changed by these dynamics, the whole family system is really upended.”
Unlike other online support groups that provide a place for COVID-19 survivors to connect with each other, the VUMC groups are led by mental health professionals and physicians.
“We try to help people learn strategies that can improve their cognition, and in the arena of what we call ‘acceptance,’” Jackson said. “How can I find a way to accept things I can’t change? How can I find a way to make peace with that, and live my life?”
VUMC also is participating in a study to determine whether a video game developed for children with attention deficit disorder by Boston-based Akili Interactive also can improve cognitive functioning in post-acute COVID patients.
In the past month, “we’ve had probably close to 30 new patients enter the study from the support groups, with some patients literally crying when they learn that they’re eligible to participate,” Jackson said.
“We’re clear about it not being a panacea. We don’t know if it works. That’s why we’re studying it. But the emotionality the patients have shown has been a reminder for us of how debilitated they really are,” he said.
Jackson is optimistic that most patients will eventually see some improvement because of his experience working with patients with cognitive impairment after long stays in the intensive care unit. That experience led to the establishment of the ICU Recovery Center in 2012, and the CIBS Center in 2018.
“Years ago, without knowing it, we had been setting the table, if you will, for a moment exactly like this,” Jackson said. “We already had an established support group, one of the few in the United States. We already had a clinic (for ICU survivors).
“So, when the tsunami of (COVID survivors) with cognitive and mental health problems emerged, we didn’t have to reinvent the wheel. We were just able to pivot.”
What surprises him and his colleagues is the stubborn severity of symptoms in patients who had only mild cases of COVID-19.
“Maybe you weren’t that sick, you never ended up in the hospital, and you certainly were never in the ICU, but the extent to which those folks a year later are quite impaired cognitively, that feels new and that feels worrisome,” he said.
Jackson also worries about people with pre-existing mental health problems or early symptoms of dementia: will PASC worsen or accelerate their cognitive decline?
Jane Storie was vaccinated against COVID-19 last year. While the vaccine didn’t relieve her symptoms, she refuses to give up. She participated in one of Jackson’s support groups for a while, and texts regularly with some of the group members.
“Almost every day there’s a group chat going on with what someone might be doing that’s helping,” she said. “I’m in therapy, doing cognitive rehab. I’m putting these practices into place that will hopefully help.”
Still, “it’s a sobering reality,” Storie added. “As a society, we expect doctors to know everything, but realize that nobody knows much, and everybody’s doing the best they can to figure it out.”
