Living long term with COVID-19
New research of survivors confirms odd waves of persistent symptoms
Cliff Morrison conquered the COVID-19 virus more than two months ago.
Then why does he still feel so lousy?
While the majority of patients with mild or moderate symptoms recover promptly, new research confirms that others suffer from a lingering cluster of symptoms — possibly caused by a battle-weary immune system.
The UC San Franciscoled investigation, which is recruiting patients from around the Bay Area, will help the growing ranks of survivors who are now returning to work and yet worry about what the future holds.
“I want to know: Will it linger for a period of time, then go away? Or will I Iive with it for the rest of my life?” asked Morrison, of Oakland, who struggles with mental and physical
fatigue as he prepares to resume his beloved career in nursing and health care administration.
A research volunteer, he is donating blood, saliva and personal information to the two-year-long project, called the Long-term Impact of Infection with Novel Coronavirus (LIINC) study, which is tracking changes in patients’ immune systems, hearts, lungs and brains as they recover from the viral assault.
Morrison and other survivors describe the illness as a hit-andrun experience, where the virus infects, sickens and then vanishes, leaving a trail of destruction.
Months after the virus has been cleared from their blood, they’re left with intermittent chest tightness, cough, fatigue, joint pain, cognitive problems and odd alterations in their senses of taste and smell.
“I have a persistent perception of smelling forest fires, so I feel like I’m surrounded by fire,” said Dr. Coleen Kivlahan, 66, medical director of Primary Care Services at UCSF Health, who was infected in late February or early March and, except for chest tightness and an occasional cough — and the strange burning smell — is now fully recovered and back at work. “Smelling that when you’re going to bed is disturbing.”
Yet when she walks by a cigarette smoker, she smells nothing.
When Morrison, 69, was diagnosed on April 8, “I thought in two or three weeks, I’d be over this.”
He’s slowly improving. His vision, once fuzzy, is getting clearer. He had lost almost all ability to navigate technical computer tasks; now, his memory is returning. He’s once again able to concentrate on TV, but only for a half-hour at a time. His moods — which once swung from depression to anger — are lifting.
“But everything tires me out,” said Morrison, a pioneer in the AIDS epidemic who in 1983, at age 31, opened San Francisco General Hospital’s Ward 5B, the first dedicated AIDS unit in the country.
“I still have some shortness of breath. I have a lot of weakness still,” he said. “I can’t remember people’s names. I forget details.”
Doctors say such reports are familiar — and fit an emerging pattern. While many of the 2.4 million infected Americans recover without incident, the increasing number of so-called “long-haulers” compare shared miseries on Facebook’s “Survival Corps” site or “Body Politic” COVID-19 support group page.
COVID-19 is not unique in the pathogen world; other viral or bacterial infections are known to cause long-lasting symptoms, noted UCSF’s Dr. Jeffrey Martin, a LIINC co-principal investigator. It can take weeks to fully recover from the flu. The Zika virus may trigger the enduring numbness and paralysis of Guillain-Barre syndrome. The bacteria Helicobacter pylori can cause irritable bowel syndrome that lasts for weeks to months. The devastating chronic fatigue syndrome is now linked to some type of pathogenic attack.
To learn more, UCSF scientists have already banked thousands of vials of immune cells, plasma serum and saliva specimens. Samples from this precious repository have been shared with 12 different research teams.
The LIINC study seeks to answer three key questions: How common are these persistent symptoms, and when do they recede? What are the characteristics of these patients’ immune systems? Finally, do survivors develop new infections, or other problems, later on?
So far, it has found a discrete pattern of symptoms, which wax and wane, according to infectious disease expert Dr. Michael Peluso of the LIINC study. Some patients report “brain fog,” struggling with concentration and memory. Others suffer from severe gastrointestinal symptoms with a month or more of diarrhea, nausea and substantial weight loss. Still others complain of intermittent bone pain. Many describe loss of smell and taste — and a phantom fragrance of fire or stale cigarettes.
The symptoms don’t appear to strike just a certain type of person, said Peluso. There’s no clear age or sex distribution. They don’t affect just the hospitalized, old or frail.
“We have people who were world-class athletes who are really incapacitated now compared to what they were before COVID,” said Peluso.
What’s behind this new unsolved problem? Experts suspect a combination of factors, both direct and indirect.
Perhaps the weird sensory symptoms are caused by cellular damage within the nose, which is infected by the virus and slow to heal. Maybe memory loss and other cognitive problems are linked to circulation and clotting disorders — in essence, “ministrokes.”
And there is emerging consensus that, even when the virus is gone, COVID-19 has wreaked havoc with the immune system, disturbing its delicate balance, said UCSF’s Dr. Tim Henrich, who studies immune regulation. The body’s protective T cells are depleted in number, and surviving cells seem exhausted. There are high levels of circulating chemicals, called cytokines, that trigger inflammation and pain.
“The research is a relief to me. It’s reaffirming,” said Morrison. “It tells me: ‘You are not alone.’ ”