Robert McCann, a 44-year-old political strategist from Lansing, Michigan, sleeps for 15 hours – and when he wakes up, he still finds it impossible to get out of bed. Sometimes he wakes up so confused that he’s unsure of what day it is.
McCann tested positive for Covid in July of 2020. He had mild symptoms that resolved within about a week. But a few months later, pain, general confusion, and debilitating exhaustion returned and never fully left. McCann’s symptoms fluctuated between grin-and-bare-it tolerability and debilitation. After a barrage of doctor’s appointments, MRIs, X-rays, blood work, breathing tests, and Cat scans, he had spent more than $8,000 out of pocket – all with no answers. Nearly a year and a half since his symptoms returned, on some days it can take him upwards of three hours to get out of bed.
“I don’t want to say they don’t care, because I don’t think that’s right,” McCann told me. “But… you just feel like you’re just part of a system that isn’t actually concerned with what you’re dealing with.”
When McCann was recently offered an appointment at a long Covid clinic through the University of Michigan, they were booked 11 months out. Without answers or possible courses of action from medical professionals, he has turned to online platforms, like Reddit’s nearly 30,000-member forum where “longhaulers” share the supplements and treatment protocols they’ve tried. He says he’s skeptical of “miracle cures”. But, after about 17 months of illness and no relief from doctor’s visits, he’s desperate. “I’ll just be frank,” he told me, “if someone has mentioned on the Subreddit that it’s helped them, I’ve probably bought it and tried it.”
Long Covid is not yet widely understood, but already has the dubious distinction of being a so-called “contested” condition – a scarlet letter often applied to long-term illnesses wherein the physical evidence of patients’ reported symptoms is not yet measurable by allopathic medicine (and therefore, by some doctors, deemed not to be real). While I don’t have long Covid, I received a diagnosis of a contested condition in 2015 after a similarly disheartening experience of being left to fend for myself.
Today, up to 23 million Americans have lingering symptoms that could be described as long Covid – and few are getting answers. And in this dangerous void, alternative providers and wellness companies have created a cottage …….