You’ve been sick and you tested positive for Covid-19. You did the right thing, you isolated at home. You’re past the required isolation period and haven’t had a fever in a couple of days, so you’re safe to be around others. And now you’re ready to get your life back to normal.
But you can’t. Because you’re still not OK. You’re too exhausted to stay on your feet long enough to work. Maybe you have trouble remembering simple things. Or you keep a killer headache, chest pain, or shortness of breath. You have long covid (also now called post-acute sequelae of SARS-CoV-2 infection, or PASC). And your doctor has no helpful advice except “take it easy for a while.” Because your doctor, like everyone else, is still learning about long Covid.
Long covid affects about 1 in 4 Covid-19 patients, regardless of the severity of their initial symptoms. A recent study in Italy found 87 percent of people hospitalized were still struggling two months after release. Four recent studies showed from 23 to 33 percent of non-hospitalized patients experienced debilitating symptoms long after the illness was no longer detectable by testing.
The same studies found age, prior health, and other risk factors don’t predict whether you will be a Covid “long hauler” as such people are now calling themselves. While vaccinated people appear less likely to become long haulers, there is limited data.
The largest study to date following 1,407 people seen at various University of California medical clinics found 27 percent suffered from abdominal pain, shortness of breath, chest pains or coughs at two months post-Covid. That’s not counting the symptom of “brain fog” that troubles 20-30 percent of long-haulers.
Basic research just to define what comprises long Covid is advancing, but there remains no standardized definition. At least 55 different long-haul symptoms have been found, with fatigue being the most common, present in 58 percent of those with the syndrome. At least 1 in 7 children report long Covid.
It’s an elusive and expensive problem, especially as people try to normalize their work, family, and social lives after having survived the illness. And it’s attracting research funding in a more serious way than it was earlier in the pandemic.
The unpredictability of long Covid makes it especially unsettling. Rodney Slane was diagnosed with Covid Sept. 3. After the recommended isolation period he was troubled by a persistent cough and fatigue. His wife also tested positive and was sick. “I thought we were getting better midway through… here it is half a month past. My energy is awful right now. I’m winded,” Slane said.
His doctor couldn’t offer specific suggestions, and he’s tried symptomatic treatment, but he’s still not back to normal. “There’s just not enough information on it. At a certain point you have to just tell people you’re better. Otherwise, they don’t want to talk to you.”
Another issue with long Covid is that it can range from a menu of debilitating symptoms to mildly annoying things that interfere with enjoying life as usual. Entertainer Jared Hollenbeck is touring Texas before returning to Eureka Springs in November. He was vaccinated but became infected in December 2020. He first thought of being tested when his sense of taste and smell became unusual, then absent.
Hollenbeck said he never became very sick. He had no cough. “It just messed with my head. I had anxiety and depression because I’d lost two of my senses.” About a week and a half later his symptoms went away, and he thought his mild case was over.
Two months later he began experiencing a strange odor which he describes as “a dirty earth smell… that’s the only way I can describe it.” He said lettuce also tastes like perfume to him. Neither symptom is constant, but both are troubling. So far no one has been able to explain his condition but it’s consistent with long Covid.
More studies are in the hopper
The necessary research is underway but will take time. Medical schools throughout the United States have begun studying long Covid. Hundreds of papers trying to figure out the syndrome have been published, and Congress has authorized more than a billion dollars for research on the long-term consequences of coronavirus infection.
Francis Collins, the director of the National Institutes of Health, recently announced a long Covid initiative that will include a large-scale, $470,000,000 study of the syndrome. “We know some people have had their lives completely upended by the major long-term effects of Covid -19,” Collins wrote.
A major area of study is the reported “brain fog” described by many long haulers. Brain fog describes difficulty in thinking, memory, and concentration above and beyond normal distraction or effects of fatigue. It’s a challenging symptom for patients to describe.
“I have heard patients say they have trouble with memory, are easily distracted, have trouble following a conversation, and have difficulty concentrating and attending to everyday tasks,” explained Kristie R. Soriano, MS, CCC/SLP, manager of Outpatient Speech Programs at JFK Johnson Rehabilitation Institute. While some neurological issues are expected in patients who have suffered Covid-related stroke or who have been under anesthesia for prolonged periods, symptoms of brain fog and clouded mental acuity are unexplained in people who had mild or no symptoms.