Millions of people now live with the debilitating disorder, which can be triggered by viral illnesses like COVID-19. And many say the recommended treatment—exercise—has backfired.
For patients with PEM, pushing past their physical limits—often encouraged in POTS recovery exercise protocols—can lead to major crashes. As a result, many patients with POTS and ME/CFS report being given inappropriate guidance on exercise, the consequences of which can be severe.
Although exercise is considered to be a first-line treatment for POTS, in a survey of long COVID patients 89.5 percent of patients reported relapses after exertion, while other patients report difficulties with following some of the exercise protocols. As a result, the National Institute of Health and Care Excellence cautions against using graded exercise therapy for treating post-COVID fatigue.
As a recent study has shown, although the majority of POTS patients use non-pharmaceutical treatments, such as exercise, to manage their symptoms, they are not as effective as pharmaceutical treatments. Still, many patients report being expected to prove that exercise alone is not enough to treat their symptoms, before their doctors will consider putting them on medication.
“A lot of doctors think that salt, fluid, and exercise is the only treatment patients need,” says Lauren Stiles, the founder of Dysautonomia International and a research professor in neurology at SUNY Stony Brook, who developed POTS in 2010. “That is very outdated thinking.”
However, just as with any medication, there are nuances to the benefits of exercise, whether it’s figuring out the right amount and intensity, or screening for conditions that are often associated with POTS, for which exercise may be contraindicated. For other conditions, such as ME/CFS, exercise can lead to debilitating crashes.
