Long COVID, long haulers, post-COVID syndrome, post-acute sequelae of COVID — from the early days of the pandemic — there have been news stories about people who don’t recover from the virus in 10 to 14 days. Instead, they are still ill weeks or months after their original infection and more than two years on, and no one completely understands why.
The uncertainty, combined with the millions affected, makes long COVID a trendy (but crucial) topic for health journalists to cover.
In a panel at Health Journalism 2022 in Austin moderated by independent journalist Margaret Nicklas, two physicians and two long COVID researchers presented a primer on what we know about the condition and what remains a mystery.
The physicians’ perspective
Michael Brode, M.D., internal medicine specialist at the University of Texas at Austin Dell Medical School and medical director of UT Health Austin’s Post-COVID-19 Program, sees the symptoms of patients with long COVID as fitting into three categories:
- Damage from the virus itself (usually correlated with the severity of the disease).
- Post-viral lingering symptoms such as cough or chest pain.
- Dysregulated post-immune response and neuroinflammatory syndrome.
Patients need not have had a severe case of the disease to develop long COVID, especially for the second two categories. About 4% of people with mild illness will still get long COVID, Brode said, adding that up to 25 million people are affected. Risk factors include having had severe multi-system disease or being unvaccinated, but also being female and having an existing autoimmune disease.
For treatment, Brode recommends first ruling out other possible causes for symptoms, checking for organ damage and screening for mental health issues. From there, providers can provide counseling, time, symptomatic care and supervised and graduated exercise plans. The most important thing for the physician to do, though? “Believe them,” he said.
Kristen Sexson Tejtel, M.D., Ph.D., M.P.H., a pediatric cardiologist at Texas Children’s Hospital and Baylor College of Medicine, treats pediatric long COVID. “It’s really a different disease in children,” she said. “Very few children have classic long COVID.” The treatment is very much the same as it is for adults though: rest, reassurance, therapy and treatment for the individual symptoms, such as headaches. “Sometimes the most important thing physicians can do is just listen to the families and make them feel heard,” she said. Potential good to come from the pandemic might be physicians learning to work together and breaking down siloes — as evidenced by a cardiologist like Tejtel treating patients who have what is considered a respiratory disease.
The researchers’ perspective
Melissa Pinto, associate professor at Sue & Bill Gross School of Nursing in the University of California at Irvine, is a nurse scientist who studies the experience of patients with long COVID and the 21 separate symptoms they have on average. At first, people with long COVID who had never been in the hospital were dismissed, she said. However, they came together on social media to discuss their situations and thus formed a community and gained attention.
Thomas Carton, chief data officer at Louisiana Public Health Institute, has held multiple leadership positions within PCORnet (the national Patient Centered Clinical Research Network), which is administering a trial across its sites. Cross-functional teams are studying electronic health records of people with long COVID.
A few common topics across all the different areas of work became clear during the discussion and can inspire new story ideas. First: the economic toll of long COVID: many patients with the condition can’t work, and children aren’t able to attend school. This scenario contributes to the current and perhaps a future labor shortage; at the same time, there is no economic safety net for those unable to work, with disability protections lagging.
Furthermore, as the mechanism of disease is not yet fully understood — and there may be more than one — large platform trials are needed to develop diagnostic tests and treatments to better help the millions of those affected.