Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse.
While watching the scientific community grapple with long COVID, I have thought a lot about a scene in The Lord of the Rings. Faced with impending doom, the hobbits Merry and Pippin ask the powerful treelike ents for help. But despite the urgency of the situation, the ents are slow. They meet for hours, and after a lot of deliberation, they announce that they’ve agreed that the hobbits are not orcs. The hobbits, who already knew that, are shocked. They were hoping for more.
In June 2020, when I started reporting on long COVID, few scientists or physicians knew that it existed—and many doubted that it did. The common wisdom was that people infected with SARS-CoV-2 mostly get mild symptoms that resolve after two weeks. And yet, thousands of “long-haulers” had already been debilitated by months of extreme fatigue, brain fog, breathing difficulties, and other relentless, rolling problems. More than a year later, several clinics care for long-haulers, while the biomedical community, like the ents, has begun to identify long-COVID patients as long-COVID patients. But some researchers still hesitate to recognize long COVID if it doesn’t present in certain ways; they’re running studies without listening to patients, and they’ve come up with their own arguably unhelpful name for the disease. Like Merry and Pippin, long-haulers are growing frustrated that what is self-evident to them—their condition is very real and in need of urgent attention from those with power—is taking a worrying amount of time to be acknowledged and acted upon.
After a year and a half, the risk of long COVID, for both unvaccinated and vaccinated people, is one of the pandemic’s biggest and least-addressed unknowns. The condition affects many young, healthy, and athletic people, and even now “none of us can predict who’s going to have persistent symptoms,” Lekshmi Santhosh, the medical director of a long-COVID clinic at UC San Francisco, told me. A small number of fully vaccinated people have become long-haulers after breakthrough infections, although no one knows how common such cases are, because they aren’t being tracked. Mysteries abound; meanwhile, millions of long-haulers are sick.
Long-haulers were the ones who described, defined, and drew attention to their condition: “Patients collectively made long Covid,” two long-haulers, the geographer Felicity Callard and the archaeologist Elisa Perego, wrote in a historical review. Now many feel that their expertise is being ignored and their hard-won knowledge is being excluded from investigations into their own illness. The message seems to be: Thanks for everything; academia can take it from here.
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).
“The interest of the biomedical community is welcome—we wanted their attention!” says Athena Akrami, a neuroscientist at University College London who is part of the Patient-Led Research Collaborative, a group of long-haulers who have been studying their own community. But many academics, as they are wont to do, are contorting questions about long COVID to fit their preexisting research agendas. “In an ideal scenario with infinite resources, scientists could take an intellectual interest in some peculiarity of the condition,” Akrami told me. “But this is the real world, and limited resources need to be distributed according to the needs of patients.”
When I first spoke with Akrami, last year, she was on day 76 of her symptoms. This year, I called her on day 526. She has improved enough to take “long” half-hour walks without crashing—in the gaps between monthly relapses that completely incapacitate her for a week. Many long-haulers partially recover after a few months, or learn to manage their symptoms. But some “first-wavers” are still dealing with cycles of serious illness. Through 2020’s spring, summer, and winter surges, Donald Trump’s departure and Joe Biden’s arrival, the vaccine rollout and Delta’s ascent, they’ve been struggling to work, concentrate, or exercise. Many have been told by medical professionals that they’re just having anxiety or making up their symptoms. Even now, “it happens more often than not,” Lisa McCorkell of the Patient-Led Research Collaborative told me.
Despite long-haulers’ fight for recognition, any discussion of the pandemic still largely revolves around two extremes—good health at one end, and hospitalization or death at the other. This ignores the hinterland of disability that lies in between, where millions of people are already stuck, and where many more may end up. The coronavirus is here to stay, and even as vaccines diminish the threat of hospitalization and death, we don’t know yet how well they will protect against the disability of long COVID. The choice we make about how to study this condition will define the toll that SARS-CoV-2 takes for years to come.
