Hope for Long-Haulers
As researchers explore the connection between post-COVID symptoms and autonomic disorders, philanthropy is supporting the search
Stephen Lummus knew he was putting himself at risk when he went to New York last year to help beleaguered hospital workers during the COVID-19 surge. “This could be the last time you see your family,” he remembered thinking.
The 58-year-old physician assistant survived his April 2020 trip to the Northeast. He also survived when, after returning to the Dallas area, he caught the virus that causes COVID-19 in December while working long hours testing patients for COVID-19 at urgent care facilities in North Texas.
“Philanthropy helps us improve the quality of our research output.”
But in many ways, the worst began after he “recovered” at home from COVID-19. Mr. Lummus – like hundreds of others who have sought treatment at UT Southwestern – discovered symptoms can linger for months after the virus abates. Last winter, two weeks after he thought he had beaten COVID-19 by quarantining at home, a flare-up came with mental fog, shortness of breath, and unbearable fatigue that finally put him in the hospital.
According to Surendra Barshikar, M.D., Vice Chair and Associate Professor of Physical Medicine and Rehabilitation, who directs UTSW’s COVID Recover program, perhaps 20% to 30% of COVID-19 patients experience such aftereffects – a problem referred to as “long-haul,” “long,” or post-acute COVID if symptoms linger for four weeks or more following the initial infection. The UTSW program is thought to be the first and still one of just a few such programs in North Texas.
After COVID-19, Taking on POTS
On March 18, 2020, Caroline Barker woke up with a burning fever, sore throat, and draining fatigue, all hallmarks of COVID-19.
“I looked totally gray. My fever lasted more than six weeks,” she said.
After recovering, her fatigue, heart rate issues, and pain persisted. She was a COVID-19 long-hauler.
Seven months later, a new symptom emerged. Whenever she stood, her heart rate skyrocketed, making it difficult to walk. She often had to lie down to avoid fainting.
At UT Southwestern Medical Center, Ms. Parker was diagnosed with POTS syndrome by Meredith Bryarly, M.D., an Assistant Professor of Neurology who specializes in neurology, neuromuscular disorders, and autonomic disorders at the Peter O’Donnell Jr. Brain Institute.
POTS affects the autonomic nervous system, which regulates bodily functions people don’t consciously control, such as heart rate, blood pressure, sweating, and body temperature.
“POTS worsened my other long-haul COVID symptoms of brain fog, muscle spasms, stabbing nerve pain, and digestive problems. I felt nauseous just eating,” Ms. Barker said. “I became bedridden. It was not fun.”
People living with POTS often have lower levels of physical fitness, and their hearts pump less blood with each heartbeat. To strengthen the heart muscle, UT Southwestern cardiologist and Professor of Internal Medicine Benjamin Levine, M.D., pioneered the Levine Protocol, a three-month exercise program specifically designed for POTS patients.
In addition to taking medication and wearing compression socks to improve blood circulation, Ms. Barker followed the Levine Protocol. Today, she’s strong enough to complete 40 minutes of daily swimming, rowing, or treadmill walking.
“This therapy is so meaningful to me as I was severely limited before,” Ms. Barker said. “To gain some of my freedom back is enormous for me – like a gift, really. I never valued my body as much as I do now.”
Dr. Levine holds the Distinguished Professorship in Exercise Sciences.
Understanding why some patients experience post-acute COVID symptoms is challenging, but physicians have noted similarities between post-COVID syndrome and the symptoms associated with postural orthostatic tachycardia syndrome, a disorder also known as POTS.
Impacting an estimated 500,000 patients nationwide, POTS affects the body’s autonomic nervous system, which regulates internal organ functions such as heart rate, blood pressure, digestion, and body temperature. POTS is among the most common type of autonomic disorders affecting younger patients, particularly women between 18 and 30 years of age.
“For many patients with POTS, it can be difficult to identify the cause of their condition. But our existing research in autonomic disorders gives UT Southwestern a critical advantage to learn from patients recovering from COVID-19 who are experiencing ‘long haul’ symptoms and may give new insights for patients struggling with POTS,” said Steven Vernino, M.D., Ph.D., Professor and Vice Chair for Education & Faculty Affairs in the Department of Neurology at UT Southwestern.
A recent anonymous gift of $1 million is being used to create a new endowment to support expansion of UT Southwestern’s research into autonomic disorders.
“Whether it is to support the time of one of our team members, or to invest in lab equipment, philanthropy helps us improve the quality of our research output as we become a nationally recognized center of excellence in autonomic disorders,” said Dr. Vernino, who is regarded as the institution’s leading researcher of autonomic disorders. “So much of our success in early stage POTS research can be traced back to the generous support of our community.”
Dr. Vernino is also the Director of the Clinical Autonomic Disorders Program and the Autonomic Disorders Fellowship Program. He holds the Rex Griswold Distinguished Professorship in Multiple System Atrophy and the Dr. Bob and Jean Smith Foundation Distinguished Chair in Neuromuscular Disease Research.
