How is COVID long-hauler syndrome treated?
Right now, there’s no standard of care for those who experience long-term effects of COVID-19 or COVID long-hauler syndrome, and some doctors feel out of their depth treating it since they don’t have treatment protocols, says Lambert.
On the bright side, Dr. Lutchmnsingh notes that many patients are improving. “Treatment is still determined on a case by case basis as each patient has a different set of symptoms, the severity of prior infection, and radiological findings,” she explains. “The intervention we have found most helpful so far has been a structured physical therapy program and is part of the reason why all patients seen in our post-COVID clinic have both an evaluation with a physician and physical therapist on their first visit.”
The purpose of physical therapy for recovering COVID-19 patients is to prevent muscle weakness, low exercise endurance, fatigue, and psychological effects such as depression or anxiety that can all result from a prolonged, isolated hospital stay. (Prolonged isolation can lead to negative psychological effects, so one of the goals of physical therapy is to enable patients to make a speedy return to society.)
Because there’s no test for long-hauler syndrome and many of the symptoms can be relatively invisible or subjective, some long-haulers struggle to find someone who will take on their treatment. Lambert likens it to other difficult-to-diagnose chronic conditions, including chronic Lyme disease and chronic fatigue syndrome, “where you are not visibly bleeding but suffering from severe pain,” she says.
Many doctors still aren’t educated about long hauler syndrome and there are very few experts scattered across the country, adds Lambert. And, while post-COVID care centers have started popping up across the country (here’s a helpful map), many states still don’t have a facility.
As part of her research, Lambert partnered with “Survivor Corps,” a public Facebook group with more than 153,000 members who identify as long haulers. “One incredible thing that people get from the group is advice about how to advocate for themselves and also what they do at home to try to treat some of their symptoms,” she says.