There was no reason to celebrate on Rachel Van Lear’s anniversary. The same day a global pandemic was declared, she developed symptoms of COVID-19. A year later, she’s still waiting for them to disappear. And for experts to come up with some answers.
The Texas woman is one of thousands of self-described long-haulers, patients with symptoms that linger or develop out of the blue months after they first became infected with coronavirus. Hers first arrived March 11, 2020.
The condition affects an uncertain number of survivors in a baffling variety of ways.
“We’re faced with a mystery,” said Dr. Francis Collins, chief of the National Institutes of Health.
Is it a condition unique to COVID-19, or just a variation of the syndrome that can occur after other infections? How many people are affected, and how long does it last? Is it a new form of chronic fatigue syndrome — a condition with similar symptoms?
Or could some symptoms be unrelated to their COVID-19 but a physical reaction to the upheaval of this past pandemic year — the lockdowns, quarantines, isolation, job losses, racial unrest, political turmoil, not to mention overwhelming illness and deaths?
These are the questions facing scientists as they search for disease markers, treatments and cures. With $1 billion from Congress, Collins’ agency is designing and soliciting studies that aim to follow at least 20,000 people who’ve had COVID-19.
”We’ve never really been faced with a post-infectious condition of this magnitude so this is unprecedented,” Collins said Monday. “We don’t have time to waste.”
With nearly 30 million U.S. cases of COVID-19 and 119 million worldwide, the impact could be staggering, even if only a small fraction of patients develop long-term problems.
Fatigue, shortness of breath, insomnia, trouble thinking clearly and depression are among the many reported symptoms. Organ damage, including lung scarring and heart inflammation, have also been seen. Pinpointing whether these symptom are directly linked to the virus or perhaps to some preexisting condition is among scientists’ tasks.
”Is it just a very delayed recovery or is it something even more alarming and something that becomes the new normal?” Collins said.
There are a few working theories for what might be causing persistent symptoms. One is that the virus remains in the body at undetectable levels yet still causes tissue or organ damage. Or it overstimulates the immune system, keeping it from returning to a normal state. A third theory: Symptoms linger or arise anew when the virus attacks blood vessels, causing minute, undetectable blood clots that can wreak havoc throughout the body.
Some scientists think each of these may occur in different people.
Dr. Steven Deeks, an infectious disease specialist at the University of California, San Francisco, said researchers first need to create a widely accepted definition of the syndrome. Estimates are “all over the map because no one is defining it in the same way,” he said.
Deeks is leading one study, collecting blood and saliva samples from volunteers who will be followed for up to two years.
Some people develop long-term problems even when their initial infections were silent. Deeks said some evidence suggests that those who initially get sicker from a coronavirus infection might be more prone to persistent symptoms, and women seem to develop them more than men, but those observations need to be confirmed, Deeks said.