Long Covid Patients Are Still Seeking Answers 3 Years Later
The bread machine Anne McCloskey bought sits idle in her Magnolia home. So do her new gardening supplies. Her burgeoning collectible book and textbook business is on indefinite hiatus. The 56-year-old gives a disbelieving sort of laugh over Zoom as she recounts her initial pandemic aspirations. “I was going to have a good time and just be kind of isolated while everybody else was worrying.”
McCloskey knew about the novel coronavirus by early March 2020—the whole world did—but “that was in Kirkland” or supposedly linked to travel. Covid-19 wasn’t even a thought when she got a runny nose and a sore throat shortly before governor Jay Inslee’s stay-home order.
But then she developed a cough and lost her ability to smell and taste. She constantly burned things on the stove, unable to detect the smoke. Delirium set in. “I remember having a note by my bed,” McCloskey says. “I had to remind myself of my name, where I was, that I had children.” She lost her voice; her vision blurred.
Though she never got a PCR test, reports of people dying alone in the ICU were enough to convince McCloskey to tough it out at home. She didn’t enter a medical facility until May, when she finally felt well enough to venture beyond her bedroom. A CAT scan found blood clots up and down her right lung.
Since then, McCloskey’s suffered what she calls the “platinum package” of long Covid issues: organ damage, vertigo, neuropathy. Her days are consumed with medical appointments; her eyes still can’t focus long enough to read a book. She’s found strength in her long Covid support group, a virtual lifeline with survivors from around the world. She’s thankful to be alive and for her doctors at UW Medicine’s post-Covid clinic, whom she calls “best in class.” It’s still a bitter sting, though, when she hears people dismiss the pandemic as over. “I’m trying to navigate out of where I am now, three years later.”
Three years later, medical experts are also charting a post-Covid future for the estimated 20 million people in the United States dealing with long Covid. Back when McCloskey was still in the thick of her delirium, researchers for the Institute for Systems Biology, Swedish Medical Center, and UW Medicine were taking blood samples from patients shortly after diagnosis and then again two or three months later. Their early pandemic aspirations were to track recuperation from the disease.
But “as it turned out, many people didn’t really recover by that time frame,” says Dr. Jason D. Goldman, a Swedish physician and a University of Washington School of Medicine faculty member. Instead, that work informed one of the first deep-dive studies into long Covid risk factors, published in Cell in January 2022.
The study was only the start. “Quite frankly, [long Covid] has defied understanding, both in the clinic and in lots of research,” Goldman says. With more than 200 identified symptoms, patterns are almost imperceptible, making it all the more difficult to design effective treatments. In October 2022 the National Institutes of Health–funded Researching Covid to Enhance Recovery (RECOVER) initiative launched a four-year clinical trial with 14 centers around the country to settle on a clinical and biological definition for the condition and to understand care for patients.
“Long Covid clinics are pretty full, and people are desperate,” says ISB’s president, Dr. James Heath, who’s leading RECOVER’s Pacific Northwest consortium. “There’s a [public] sense that we’re done with this, that we want to move on to the next problem.”
But that doesn’t mean this problem has gone away. On a recent trip to her doctor’s office, McCloskey stepped off the elevator wearing a mask and eye protection. Then she heard someone mock her getup as the doors slid shut. “I’m just like, you have no idea,” she says, her voice growing watery. The world wants to move on. She does, too.