Roughly 16 million Americans are living with long COVID, but many are not getting the right medical care. Letting patients lead could fix the system.
Because so many physicians are uninformed about ME, some at long COVID clinics prescribe therapies that have been proven to be harmful to patients who experience post-exertional malaise . Graded exercise therapy —a controversial form of physical therapy for ME and long COVID which slowly increases exercise over time—. “Graded exercise therapy implies that you can exercise yourself into fitness and resolve the illness,” Bateman says. “When in reality, that’s not the case.
Jordan, a 23-year-old who wished to omit his last name, says he was referred for pulmonary rehabilitation after two visits to Houston Methodist’s COVID-19 Recovery Clinic in the spring of 2022. He followed a program of increased aerobic exercise resembling GET for about a month. “24 hours after I finished each session I’d get a flare-up of symptoms,” he says.
Jordan says he has been living with long COVID symptoms since getting his second COVID-19 vaccination dose in May 2021. Before that, he had two prior SARS-CoV-2 infections. Though there are few studies on, some immunologists believe it may provide clues on the biology of long COVID. His symptoms got progressively worse as he followed the GET-like program, leading to lightheadedness and “burning” headaches. When Jordan mentioned this to a nurse practitioner at the Houston Methodist clinic, he says he was told to continue exercising, do cognitive behavioral therapy, and come back in six months.
A spokesperson for Houston Methodist wrote to me that they do not prescribe GET at their post-COVID clinic, but that if a patient at the clinic requires pulmonary rehabilitation a respiratory therapist may recommend a “gradual exercise regimen” based on that individual’s needs. Jordan says his therapy included an increase in the length of the time of the exercises, which is a feature of GET.
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