This attitude is slowing down long-COVID research and skewing its focus. Both long-haulers and researchers who work with them have told me about flawed studies that paint an inaccurate picture of the condition, or clinics that are recommending potentially harmful treatments. Many researchers, they argue, are missing the full picture because they’re treating long COVID as a completely new entity, and ignoring telling similarities to other complex illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)…

Without knowing that base, some doctors are treating long-haulers in unhelpful and frustrating ways. A few months ago, Athena Akrami’s husband, who is also a long-hauler, developed vertigo, dizziness, and other signs of POTS—a disorder of the autonomic nervous system that is common in long-haulers. POTS can be diagnosed by monitoring a patient’s heart rate and blood pressure as they stand up, but because most doctors don’t know to do that, Akrami’s husband received a series of incorrect diagnoses—including earwax buildup. He was diagnosed correctly only after he saw a cardiologist who specializes in POTS. Akrami wants agencies like the CDC and the WHO to develop guidelines that tell doctors how to recognize and test for POTS, ME/CFS, and other conditions that many long-haulers develop.

Ignoring these conditions can be disastrous. Many physicians are putting long-haulers on exercise regimes. But if patients have post-exertional malaise, exercise can lead to extreme physiological crashes—a truth that the ME/CFS community learned the hard way. “Obviously, you don’t want people to retire to bed and never get out,” Hanson told me, “but if ME/CFS patients repeatedly go past a certain level of exertion, they usually get permanently worse.” For years, such patients were told to exercise (or get psychological therapy), in large part because of a now-discredited study called the PACE trial. The damaging influence of that trial has taken years to undo—the CDC has removed recommendations for exercise therapy for ME/CFS, and other countries are updating their guidance—but several long-COVID clinics, seemingly unaware of this ongoing controversy, are now repeating the same mistake. “We’re continuing to see patients being told to exercise their way out of it,” McCorkell told me.