Post-COVID-19 mystery
Up to a third of patients suffer painful longterm symptoms
“The only thing we know is that this syndrome is real.”
Dr. Steve Deeks, who is researching postCOVID syndrome at UCSF
The end of the pandemic feels tantalizingly near as vaccines arrive and the pace of new infections slows. But a new coronavirus mystery is set to keep researchers busy in the Bay Area and across the country for years to come.
Doctors call the medical conundrum “postacute COVID syndrome.” Scientists prefer “postacute sequelae of SARS-CoV-2 infection.” But those suffering from the multitude of frightening symptoms that don’t go away just call themselves “longhaulers.”
“Thousands of researchers across the United States are going to be developing projects to study this problem,” said Dr. Michael Peluso, an infectious disease expert who manages a UCSF study of long-haulers with funding for 250 participants. “There will be a huge effort to do this now, and it will far exceed the small studies that have existed so far.”
Terrifying for sufferers and frus
trating for physicians, postCOVID syndrome’s questions far outnumber answers. Scientists don’t know how common it is, what causes it, and who is likely to get it.
A cough that won’t quit, shortness of breath, exhaustion, headaches and brain fog are the most common symptoms reported by longhaulers — people who no longer test positive for the coronavirus yet, months later, still feel ill. Scientists can’t predict how long people will suffer, and they don’t know if they should study everyone together or group people by symptoms.
“The only thing we know is that this syndrome is real,” said Dr. Steve Deeks, who works with Peluso on the UCSF study.
The National Institutes of Health is calling postCOVID syndrome a “public health priority” and will soon invite proposals for studies. Grant money will be awarded in late March and early April, financed by $1.15 billion allocated in the latest coronavirus relief package to study the longterm effects of COVID, officials said.
Understanding postCOVID syndrome is critical because it may strike millions of people.
More than 110 million people around the world have been infected, and small studies suggest that 1 in 3 of them could suffer longterm effects. On Friday, a University of Washington study published in JAMA found that 30% of 177 patients reported symptoms up to 9 months after their illness. In July, the Centers for Disease Control and Prevention reported that 35% of 292 patients interviewed had symptoms two to three weeks after diagnosis.
To Fred Marziano, answers can’t come soon enough. A sergeant with the Marin County Sheriff ’s Office, he worked side by side with Public Health Officer Matt Willis last March at the county Emergency Center handling the new coronavirus crisis. Both got COVID19 — but their outcomes couldn’t have been more different.
Willis, 55, tested positive for the virus on March 22. He told The Chronicle in May that he suffered mightily from nausea, diarrhea, numbness and vasculitis for more than a week before improving on day 12. He returned to work on April 20.
Marziano began coughing on March 19. That night, feverish with chills and sweats, he called Kaiser. Four days later, he tested positive for the virus.
A gym rat who loved hiking with his teenage daughter, Marziano, 50, now needs a walker. He often feels dizzy and has to sit down. His oxygen is low, his blood pressure is high, and he has trouble remembering words. He needs nebulizers and inhalers to breathe and has developed sleep apnea. On Feb. 10, he retired.
COVID researchers are considering numerous possible explanations for the phenomenon: Virus fragments lingering in the body. The immune system attacking the body even after the infection is gone. The loss of olfactory nerves that govern taste and smell may also cause psychological symptoms. Microscopic blood clots, persistent inflammation, or both wreaking havoc.
“If I had to put my money down, I’d say it’s going to be some combination of factors, including some we haven’t thought of yet,” Peluso said.
The postCOVID clinics popping up around the country reflect that tapestry of ideas. California has at least six, some equipped to treat hearts, lungs and brains. Others focus on nutrition, exercise or psychology. Unlike traditional hospitals that evaluate those areas independently of one another, postCOVID clinics treat groups of symptoms — the syndrome — across all of that territory.
Patients often arrive at the UC Davis postCOVID clinic frustrated that previous tests revealed nothing wrong — yet they feel anything but normal, said Dr. Christian Sandrock, an infectious disease and pulomonary expert who helped start the clinic. So doctors there hunt for suspects that may evade the usual tests.
The clinic might perform a breathing test of a patient’s “diffusing capacity” to see how well oxygen and carbon dioxide move across the lungs, Sandrock said. An abnormal result may indicate the presence of microscopic blood clots. To see if those minuscule culprits exist in the heart and brain, the clinic might do an MRI of those areas. The doctors also check patients’ level of Creactive protein, which the liver produces in response to inflammation that damages healthy cells.
But if doctors can pinpoint why a COVID survivor still feels ill, can they fix the problems?
“That’s the milliondollar question. What the heck do we do with these people?” Sandrock said.
They aren’t altogether out of options. Some patients with microscopic blood clots, for example, receive blood thinners.
“And they’ve gotten a lot better. But that’s totally anecdotal,” he said.
At UCSF, 20 of the first 100 people in the study of longhaulers reported persistent brain fog — including forgetfulness, trouble thinking of words, and disorganized thinking that led to missed deadlines. Of the 20, 14 had never been to the hospital for their
COVID, so the changes couldn’t be blamed on side effects often associated with immobility or drugs administered during a long stay for treatment.
Dr. Joanna Hellmuth, a neurologist, took a closer look at the 14, whose median age was 39.
Cognitive symptoms in patients recovering from COVID19 may “last months or longer after acute illness,” Hellmuth and her colleagues reported in a study published Feb. 2 on the online site SpringerLink. They also found that traditional tests for detecting dementia in elderly people showed nothing wrong with this group.
Instead, the problem looked similar to the kind of brain fog associated with HIV, which is linked to inflammation and an overactive immune system.
But questions remain. “Is this a direct impact of the virus? Or an indirect impact of the inflammation? What if the immune system is instead making antibodies against the brain — a postinfectious autoimmune process?” The neurologist has submitted a grant proposal to find the answers.
Meanwhile, thousands of postCOVID sufferers say waiting for such answers is nearly as excruciating as the symptoms, and they have turned to one another for relief. One popular gathering place is Body Politic, a Slack forum open only to those with the syndrome.
“I’m on there every day,” said Joy Wu of San Carlos, a medical device engineer who got sick in March after visiting the Galapagos and spending time on a yacht.
“I thought my heart was going to explode,” said Wu, who landed in the emergency room. But Wu wasn’t given a coronavirus test until early May, and by then it came back negative. So did an antibody test, which can have a false negative rate of 20% to 30%, studies show.
Wu has since been to the emergency room seven times. She’s had chills, low oxygen, elevated heart rate and now walks with a cane, though she is just 37. Like Marziano, she’s stopped working. For state disability, her doctor listed “chronic fatigue syndrome” because no test has proved she was infected with the coronavirus.
“I do believe I have postCOVID,” Wu said. “But postCOVID is not recognized yet.”
UCSF doctors Juliet Morgan, a neurologist, and Meghan Jobson, an internist, not only recognize postCOVID syndrome but are trying to help sufferers through free “mindfulness” training so they can better relax and tamp down symptoms.
In their group is Tom Seck, 45, a Kansas pediatrician and patient at UCSF. He believes he caught COVID last spring from a patient’s family. Seck has had trouble breathing since day 9 and suffers from blurry vision, a fluctuating heart rate, debilitating brain fog, and headaches that mimic two prior concussions. Doctors say he has “viralinduced autonomic dysfunction,” or damage to his nervous system from COVID. He hasn’t been able to work since September.
“I want you to appreciate the light in the room,” Morgan says in a soothing voice over Zoom. “Go ahead and close your eyes.” Seck, a slender man with curly hair and a brown checked shirt, closes his eyes. So does Jobson. “We’ll allow that light into the soles of your feet. That light can give you energy. It can give you relaxation. It can melt away tension.”
For five minutes, Morgan directs Seck to imagine the light traveling through his body, healing it and lubricating his joints. She tells him to breathe deeply. Then, after directing Seck to send the light deeply into his brain and asking if any part of his body might want more light, Morgan says to “gently open your eyes.”
“Tom, how did that feel?” Morgan asked.
“Great. Very relaxing. Great,” Seck said before leaping up and racing out of the room, calling: “I need to go let my dog out!”
Awkward conclusion notwithstanding, Seck’s sessions have helped him, he said, and he and others requested that they continue beyond the initial four that began in December.
Morgan and Jobson will enroll a new group in April, including for nonUCSF patients. Those interested can visit the Osher Center for Integrative Medicine website for information.