Candy Malina of the Lakeview East neighborhood tested positive for COVID-19 in mid-March, with a cough and flu-like illness she described as debilitating but never life-threatening or requiring emergency care.
Yet more than three months later, the 60-year-old social service agency administrator says she still suffers from lingering symptoms: hoarseness, coughing and gastric issues, along with an unrelenting fatigue that makes it difficult to function.
Since her diagnosis, she has tested negative for the virus twice. A positive serology test showed that her body is producing COVID-19 antibodies. But she does not feel recovered.
“I just passed 100 days … and I still have that intense feeling of fatigue and ‘brain fog’ every day,” said Malina, who has mild asthma but was otherwise healthy prior to the virus. “I have not been able to drive yet or walk more than a few blocks.”
She is among an emerging group of COVID-19 survivors, dubbed the “long-haulers,” who endure symptoms for weeks — even months — past the expected recovery period, mystifying physicians and scientists who are still grappling to understand the new virus.
“This disease, it has many faces, and we’re just starting to scratch the surface of what convalescence is like,” said Dr. Reynold Panettieri Jr., a pulmonary critical care physician and director of the Rutgers Institute for Translational Medicine and Science at Rutgers University in New Jersey.
While many COVID-19 patients bounce back relatively quickly from mild cases — and others are asymptomatic — Panettieri said a growing number are reporting a prolonged recuperation often marked by intense fatigue. Many of these survivors are younger and without major underlying medical conditions; some were even athletes, he said.
“Even those who weren’t in the (intensive care unit) or put on a ventilator have manifested this almost chronic fatigue-like syndrome for a period of time, displaced by weeks and sometimes even months, and it’s somewhat inexplicable,” said Panettieri, who is leading a six-month study of COVID-19 in front-line hospital workers.
Along with persisting physical ailments, he said many are also experiencing heightened fear and anxiety because so much about the new virus is still unknown.
Their questions loom, unanswered: When will symptoms fade? When will the exhaustion subside? How long is the virus still shedding? Will antibodies provide protection from reinfection, and for how long?
For Malina, the most troubling thought is that her health and stamina might never return to normal. She has read about patients who survived SARS years ago but suffered abiding chronic fatigue syndrome-like symptoms, without relief.
“To function at this level long-term is just really scary,” she said. “I don’t know at what point I shifted from ‘when am I going to get better?’ to ‘what if I don’t get better?’”
One infectious disease expert from England has referred to this lengthy recovery as the “long tail.”
In a May blog post chronicling his own battle with COVID-19, Paul Garner, professor of infectious diseases at Liverpool School of Tropical Medicine, described seven weeks of poor health with symptoms that changed “like an advent calendar, every day there was a surprise, something new.”
“The illness ebbs and flows, but never goes away,” he wrote. “Health professionals, employers, partners, and people with the disease need to know that this illness can last for weeks, and the long tail is not some ‘post-viral fatigue syndrome’ — it is the disease.”
Earlier this year, as the novel coronavirus initially spread across the nation, medical experts were primarily consumed with keeping the most severely ill patients alive and handling surges at hospitals, Panettieri said. Now more physicians and scientists likely will be shifting their focus to understanding the long-term consequences of the virus, as well as what recovery looks like, he said.
The lack of definitive answers can be disheartening for survivors.
Some say their loved ones or employers have expressed disbelief at their prolonged sickness; other patients start to question whether the long-term symptoms are real and if they are the only ones suffering, he said.
“They start to doubt, is this all mental anguish or post-traumatic stress from this?” Panettieri said. “The prolonged symptoms you’re experiencing are real. You’re not alone. Others are having the same kinds of symptoms, and the scientific community is working tirelessly to try to characterize the long-term consequences.”
A Change.org petition urging leading international health organizations to revise COVID-19 guidelines to “accurately reflect recovery periods” has more than 9,000 signatures from supporters across the globe. The site includes a mosaic of images of 360 patients who had less severe cases of the virus but are reporting prolonged illness, according to the petition.
Comments posted beneath the signatures offer a glimpse at the frustrations of COVID-19 patients who don’t seem to be getting better.
“I’m signing because I have been suffering for three months with this bizarre and debilitating virus, and many people seem ignorant or dismissive of the long haul, or the long tail of COVID-19,” one person wrote.
“I’m a doctor with symptoms over eight weeks now,” another person wrote. “Please spread the word to healthcare professionals so appropriate public health decisions can follow!”
“It’s not just about not dying,” wrote a third person.
Necole Muhammad of the Roseland neighborhood tested positive for COVID-19 in mid-May but said her symptoms began weeks prior to the diagnosis.
The first thing she noticed was a strange metallic flavor in her mouth. Then she lost her sense of smell and taste. The cough and shortness of breath were moderate. Headaches felt “like a vise – someone squeezing a vise” around her head, she said.
Muhammad said she never had a fever, but the exhaustion and chills were intense.
“I can’t get warm,” she recalled telling her husband. “These shivers, it’s tripped out; I can’t fight it.”
In late May, she took another test, which came back negative. Yet weeks later, she said many symptoms persist.
Her taste and smell haven’t returned to normal. The fatigue comes and goes. Walking outside twice a day seems to ease the headaches a little, she said.
“Here’s the scary part,” said Muhammad, a 47-year-old licensed clinical social worker. “You are sick and you can’t, there’s nothing really you can do about it, except try to build up your immune system.”
Dr. Meeta Shah, an emergency medicine physician and assistant professor of emergency medicine at Rush University Medical Center, calls the virus “probably the most confusing illness I’ve ever experienced before in my life.”
Shah said medical experts still have much to learn, including why some patients recuperate quickly and others have long-term complications or residual symptoms. For example, Shah recently had a young woman come in with a blood clot that turned out to be an unexpected complication from COVID-19.
“We’ve never been in the situation before,” she said. “We just don’t know what this is going to look like in six months. How are these patients going to do in six months? Are they going to continue to have straggling symptoms? Are they going to have other complications that we don’t know or anticipate? And I think that’s a lot of the research that’s starting to develop now, to figure out what do we need to worry about weeks and months from now for these patients.”
Breaking News Newsletter
As it happens
Get updates on the coronavirus pandemic and other news as it happens with our breaking email alerts
After being sick for so long, Muhammad said she’s particularly concerned about the economy reopening, with Illinois and other states around the country easing restrictions. While she’s sympathetic to small businesses owners and workers who worry about their jobs, she fears for the public health consequences, particularly in states experiencing a surge in cases, like Florida, Texas and Arizona.
It can also be frustrating to watch others flout social distancing guidelines or behave as though the pandemic is over, she said. She recalled walking with her husband recently to get some Italian ice, and seeing a group of youths congregating nearby without masks.
“It can have a serious emotional toll on the person, the level of anxiety,“ she said. “You have a different lens when someone approaches, or when someone coughs nearby.”
Muhammad added that she was healthy and exercised frequently, working as a yoga instructor, before she caught the virus. While individuals with certain underlying medical conditions are at a higher risk, according to the U.S. Centers for Disease Control and Prevention, Muhammad believes there’s a misconception that COVID-19 can sicken only the elderly and people with existing health problems.
“I just want people to understand you can’t put a face or a specific profile … on COVID-19,” she said. “It should be a wake-up call for a lot of us. This could happen to anybody.”