Back in the summer of 2020, when the pandemic was still new and hospitals were overflowing, Emory Healthcare opened a facility to treat a perplexing group of COVID-19 survivors.
The patients had withstood the virus’s initial onslaught but couldn’t shake some of the symptoms.
At the time, Dr. Alex Truong thought the long COVID clinic might be needed for a year, maybe two.
But long COVID — a mysterious constellation of ailments that can go on for many weeks or months — has become a bigger problem than Truong could have ever imagined.
In the U.S. alone, 1 in 5 of the adults stricken with COVID-19 have developed conditions that could be considered long COVID, according to a recent study by the Centers for Disease Control and Prevention. Symptoms range from brain fog and unrelenting fatigue to gastric and cardiac issues. Among those 65 and older, the estimates are even higher — 1 in 4.
That translates into millions of Americans and more than 300,000 Georgians.
Other estimates vary wildly. There is no test for long COVID. No official statistics exist.
Clinicians at the Emory clinic have treated more than 1,000 COVID survivors. There’s now a four-month waiting list to be seen at the clinic.
“It’s been shocking,” said Truong, who is co-director of the clinic, located at Emory University Hospital Midtown. “I’ve never seen, with other infections, such widespread, all-over-the-body symptoms for this long.”
COVID can wreak havoc on a person’s body and damage organs – the lungs, heart, kidneys and liver. Experts worry that people who are infected multiple times have increased chances of developing long COVID.
How is long COVID defined?
A recent CDC study says that 1 in 5 of U.S. adults stricken with COVID-19 have developed conditions that could be considered long COVID, which the agency defines as symptoms lasting at least four weeks after infection.
The CDC says the following symptoms are the most common for this complex and poorly understood condition:
- Tiredness or fatigue that interferes with daily life
- Difficulty breathing, shortness of breath, chest pain
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Sleep problems
- Digestive issues
- Joint or muscle pain
“With COVID, we tend to think about the hospitalizations and deaths, and then we kind of stop there sometimes,” said Dr. Tiffany Walker, who has treated long COVID patients at Grady Memorial Hospital. “I don’t want to paint the picture of everybody’s debilitated, but some people are, and it’s people that don’t expect it. The times that people have cried in my office because they’re just so overwhelmed is like more than anything I’ve experienced before in clinical practice.”
Walker now leads a long COVID study at Grady, which is part of a massive National Institutes of Health effort to find the connection between seemingly unrelated symptoms that have afflicted patients and confounded physicians.
Scientists still do not know how the virus triggers such a wide range of problems, from minor to incapacitating, or why issues emerge in some patients but not in others, or what exactly the risk factors are for developing them.
What’s more, there is no specific treatment for long COVID. Instead, the current approach is to deal with each symptom individually.
It’s often hard to offer satisfying answers to patients. “It’s just very upsetting and really challenging,” Walker said. “As a physician, you really want to be able to provide a prognosis at least, at a minimum to be able to express to them, this is what you can expect.”
But doctors “don’t know enough to know what the course is going to be and who’s going to get better and who isn’t, and you don’t know enough about how to treat those that aren’t getting better,” she said.
And the world’s leading health organizations don’t even have a standard definition of what constitutes long COVID, Truong said. The CDC defines long COVID, which it calls Post-COVID Conditions, as symptoms lasting four weeks or longer after infection. The World Health Organization says people cross over into long COVID after symptoms persist for at least three months.
In 2021, 60% of patients at the Emory and Grady long COVID clinics enrolled in a study aimed at gathering more information on the illness. At the time of their enrollment, patients had already been dealing with COVID symptoms for an average of 107 days.
Even people who have mild or asymptomatic COVID-19 infections can have new health problems crop up months after they’ve tested negative.
The CDC’s study evaluated electronic medical records for nearly 2 million people. The agency compared those who had been infected with the coronavirus and those who had not. The analysis found 38% percent of the COVID patients developed one or more new health problems, compared to 16% percent of the non-COVID patients. The health problems of about 21% of the younger COVID patients in the study, those ages 18 to 64, and nearly 27% of the older people, 65 and up, could be attributed to long COVID. The study did not look at vaccination status.
A growing number of studies suggest that getting a COVID vaccine can reduce — though not eliminate — the risk of longer-term symptoms.
Some experts think that today’s omicron strains pose a lower risk for long COVID than previous variants. But they caution: Even if omicron is less likely to cause long-lasting symptoms, particularly for people who have been vaccinated, the actual number of long COVID sufferers will still grow due to the high infection rate.
It’s often hard to determine whether health problems that emerge after a case of COVID are truly triggered by the virus.
Lead Nurse Practitioner Lori Reed, who works at the Piedmont Pulmonary COVID Recovery clinic, said some patients dealing with preexisting conditions may be more aware of them after coronavirus infections. That means it’s important for clinicians to obtain thorough medical histories to pinpoint when symptoms, such as dizziness, memory loss and headaches, started and when they worsened, she said.
“One that comes up all the time is asthma because asthma can develop at any point in life,” Reed said. “We know, historically, viral illnesses can cause asthma onset, so COVID can cause asthma onset. But, with women, hormonal changes and menopause can also cause onset.”
Reed recommends patients see a doctor after a COVID infection to rule out COVID-related damage to the body, and she urges people to remain vigilant of any sign of new problems.
“Pay attention to subtle things that some people may write off,” she said. “Talk to your doctor about brain fog or things like, ‘I just forgot what I was going to make for dinner,’ or ‘You know, that bill came in, and I forgot to pay for it.’”
At long COVID clinics, a team of specialists — cardiologists, pulmonologists, neurologists, psychiatrists and others — work together to treat patients. Often, the patients undergo a comprehensive evaluation, including a series of lab tests and imaging tests, to rule out other undiagnosed medical conditions.
Lacking established therapies for long COVID symptoms, doctors often rely on approaches that have been used for other ailments with similar symptoms.
“It's been shocking. I've never seen, with other infections, such widespread, all-over-the-body symptoms for this long."
- Dr. Alex Truong, co-director of Emory Healthcare's post-COVID clinic
Neurological stimulants such as Adderall have shown to be effective at improving energy and focus. Albuterol, an inhaled medicine frequently used to treat asthma, can improve breathing. Other medications, physical therapy and cognitive programs also can be helpful.
“I would say to people who get COVID, you didn’t ask to get COVID, and you don’t deserve to fall ill and not have answers,” said Reed. “Reach out to somebody to at least be seen and evaluated because we can do things to get you feeling better. If we can’t reverse the long-term consequences, we can at least improve your quality of life.”
A high-stakes undertaking
Close to 1,000 people in Georgia — and at least 17,000 adults across the country — are being recruited for the massive NIH study called Researching COVID to Enhance Recovery (RECOVER). Its goal is to answer fundamental questions about exactly how the virus causes long COVID, which ultimately could lead to better, more tailored treatments.
The study sites in Atlanta — Emory Hope Clinic, Grady, Morehouse School of Medicine, the Atlanta Veterans Affairs Healthcare System and Kaiser Permanente of Georgia — will work together and are slated to receive a total of about $20 million over four years for the high-stakes undertaking.
The NIH study
The Atlanta sites for the NIH are still actively recruiting patients who have had COVID-19 in the past 30 days, as well as those who have never been infected. Click here for more information.
Walker, from Grady, said clinicians have been working to recruit a diverse group of adults, and are seeking three categories of participants: those who have COVID right now, those with long COVID, and others who have never had COVID. Finding people who have never had the illness is getting increasingly difficult with an ever-changing virus and continued waves of infections.
Plenty of theories have formed around long COVID. Some researchers think people suffer prolonged symptoms because they have never really shaken COVID-19, though they think they have. Instead, the virus is still hiding in their bodies, damaging nerves and other organs. Other research suggests the virus may be gone, but it causes the immune system to go haywire and attack the body.
There’s also research that indicates certain medical conditions may play a role in who develops long COVID, such as Type 2 diabetes, or a reactivation of Epstein-Barr virus, which infects most people when they are young.
In July 2020, Latoshia Allen Perrymond fell ill with COVID. Within a week, the 52-year-old Stone Mountain woman was struggling to catch her breath. She ended up hospitalized — for four months.
Though she survived, COVID damaged her heart and lungs. She said she’s been struggling ever since. Dependent on oxygen around the clock, the former caregiver now relies on family members to help care for her.
She can no longer go on walks with her husband or cook big meals, or even sleep lying flat.
In late March, she eagerly joined the NIH study at Grady.
Like other participants in the NIH RECOVER study, she’s undergoing physical assessments.
“I feel good about the study because it means that I’m part of the answers,” she said, adding that her faith in God gives her strength. “I’m willing to do whatever they need because this COVID and long COVD is a monster. I’m learning to live with this new norm for me, and I hope to get better.”
Doctors are also eager for more answers.
“My hope is to find a pathology that unifies all of these symptoms,” said Truong. “My hope is, as the pandemic progresses, the variants become less virulent and less likely to cause long haul issues, and more and more patients are getting vaccinated. I hope we learn from this pandemic so that, when the next pandemic comes, we are a lot smarter, a lot more nimble in our approach, and more aware of the long haul issues.”
For now, the best way to try to avoid long COVID is to try to avoid the virus, Truong said. Get vaccinated and boosted and wear masks – especially indoors around crowds of people.
“It’s as simple as that,” he said. “But, unfortunately, I don’t think people want to hear it.”