Jama Network by Esther Wei-Yun Landhuis, PhD
First she had heart palpitations, a bad headache, a spike in blood pressure. Then came tingling and numbness in her foot and hand, along with crushing fatigue. Some days, 53-year-old Susan Jeansonne, MD, could not keep her eyes open past 5 pm.
“This is a very long but good article that features a doctor struggling to manage and not knowing what might have caused her symptoms. It is American and talks about the difficulties of accessing good healthcare and finding specialists and has some similarity with the situation here in the UK. It includes management recommendations from specialists working with both Long Covid and ME/CFS patients some of which is very sensible, but the use of exercise to treat PoTs should be taken with caution as not everyone could or should be approaching PoTS management in this way.”
Head of Communications. The ME Association.
Yet her electrocardiogram, blood counts, and basic laboratory results all looked fine. So “I just kind of went on about my business,” said Jeansonne, a pediatrician who offers home-based care in Kingsport, Tennessee, recalling her January 2022 symptoms in a recent interview with JAMA.
But before long, things got worse. Vacationing with family that March at Universal Orlando in Florida, Jeansonne—a self-proclaimed gym rat who hikes and farms and lives with 3 big dogs on 77 acres—could barely walk. “It felt like I couldn’t quite make my toe push off,” she said. Coming home with a severe headache and stiff neck, she wondered if she had meningitis, or maybe Lyme disease.
While awaiting Lyme titers, Jeansonne started a course of doxycycline, then had a routine surgery that had been postponed due to the COVID-19 pandemic. For 2 weeks, she did “pretty much nothing” while recovering at home. “I felt great,” she said.
Returning to work, though, “everything came back almost exponentially”—the numbness, the tingling, the palpitations—and then the brain fog started. Jeansonne struggled to get through her continuing medical education work. “I told my husband, something’s really wrong,” she said.
In December 2021, about a month before the initial episode of disabling symptoms, Jeansonne had come down with a mild illness—a sore throat, backache, headache, and 100 °F fever. But after a day of rest, she felt better. Test results for respiratory syncytial virus, influenza, and COVID-19 all were negative. Later, though, a polymerase chain reaction, or PCR, test for COVID-19 would read positive.
The Bateman Horne Center
One puzzling aspect of post–COVID-19 condition is that it can develop “in a stuttering fashion, or in a delayed way, so it becomes a little difficult to connect it to the infection,” said Lucinda Bateman, MD, an internist and founder of the nonprofit Bateman Horne Center, a clinic combined with a research and education organization in Salt Lake City, Utah, that focuses on chronic, complex disorders including long COVID.
Another challenge is the inability to clearly measure the condition. “We don’t really have specific tests—something that could say, ‘Oh, you have long COVID,’” Bateman said. Plus, she noted, it can be hard to link symptoms in different organs to the same original process, especially because primary care physicians “work on a very pressured calendar,” so they have limited time with each patient.
Despite the time pressure of typical primary care appointments, Bateman thinks general physicians are well positioned to deliver supportive care for patients with long COVID. “You might need specialists to help screen for specific problems,” she said, but “they’re just looking at their slice. They’re not really managing the whole patient the way we do in primary care.”
Out of desperation, Jeansonne asked for help on a Facebook group for physician mothers. Someone tagged physiatrist Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine at the Long School of Medicine at UT Health San Antonio. Verduzco-Gutierrez raised the possibility of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with orthostatic intolerance and suggested resources at the Bateman Horne Center.
After watching several of the center’s videos and downloading its guidance for ME/CFS-related postexertional malaise, Jeansonne started drinking electrolyte fluids and wearing compression socks. She paced her activity, lying down for a 15-minute break every few hours and not answering evening calls. She downloaded an exercise protocol developed for postural orthostatic tachycardia syndrome (POTS) and began a graded program of horizontal exercise. After 6 months on this regimen, Jeansonne has resumed seeing patients 4½ days a week. She rejoined the YMCA, has normal blood pressure, and rarely gets a headache.