“But for all we know now about long COVID, it is still not enough. Researchers still don’t know who’s most at risk, or how long the condition might last; whether certain variants might cause it more frequently, or the extent to which vaccines might sweep it away. We do not have a way to fully prevent it. We do not have a way to cure it. We don’t even have a way to really quantify it: There still isn’t consensus on how common long COVID actually is. Its danger feels both amorphous and unavoidable. People already struggle to deal with well-known risks, let alone fuzzy, slippery ones. “You can be too afraid of what you don’t understand or just say, ‘It’s not well defined; I’m not going to think about it,’” says Erin Sanders, a nurse practitioner and clinical scientist at MIT. Concern, when we let it, can act like a gas. It expands to fill the space we give it.
[..] even if long COVID’s prevalence turns out to be a single-digit percentage of SARS-CoV-2 infections—proportionally much smaller than most experts estimate—in absolute terms “that is not small,” says Ziyad Al-Aly, the director of the Clinical Epidemiology Center at the Veterans Affairs St. Louis Health Care System. Millions of people have already developed long COVID; many of them, an untold fraction, have not recovered. This is the challenge of chronic illness: When people join its ranks, they do not always exit. [..]
Long COVID has hundreds of possible symptoms. It can batter the brain, the heart, the lungs, the gut, all of the above, or none of the above. The condition can start from a silent infection, an ICU-caliber case, or anything in between. It can begin days, weeks, or months after the virus first infects someone, and its severity can fluctuate over time. “We lump all of that into one broad thing,” Al-Aly said. “It is not.” [..]
We don’t have a clear-cut, consensus clinical definition, a single name for the condition, or a standardized set of tests to catch it. Even the CDC and the WHO can’t agree on how long a person must be sick before they meet the condition’s criteria. Some researchers and health-care providers favor one agency’s definition; others, dissatisfied with both, come up with their own. And “there are still doctors out there that do not think long COVID exists,” says Alexandra Yonts, a pediatric-infectious-disease specialist at Children’s National Hospital, in Washington, D.C. That makes researching the condition fraught, and studies less uniform. [..]
All told, the study of long COVID has become, as Sanders of MIT puts it, “a data disaster.” Some researchers estimate that a single-digit percentage of SARS-CoV-2 infections bloom into long COVID; Al-Aly is one of them. Others, meanwhile, favor larger numbers, with a few even insisting that the rates are actually more than half. Most of the experts I spoke with said they feel comfortable working in the 10 to 30 percent range, which is where many studies seem to be starting to converge. Finding one answer is tricky, without knowing how many forms long COVID can take—some could be more common than others. [..]
Another analysis estimates that up to 23 million Americans have developed the condition since the pandemic’s start. More will join them. But [Patient-Led Research Collaborative’s Hannah] Davis worries that those numbers will continue to be left off of national dashboards, and thus out of the public eye. Now that the federal government has tightened the boundaries of its concern to hospitalizations and deaths, the public does not even really have to look away from the national perspective on long COVID: There is next to nothing to see. [..]
No matter where the true numbers on long-COVID risk sit, they are too large to ignore. “Whether it’s 10 percent or 50 percent, at both levels you have to do something about it,” [Queen Mary University of London epidemiologist Deepti] Gurdasani said. Statistics will help sharpen and clarify the condition’s boundaries, and are still worth seeking out. They will not, however, change long COVID’s threat, at its core.”
Full article, KJ Wu, The Atlantic, 2022.3.11