In fall 2020, clinicians at Emory began treating a growing group of patients who had seemingly recovered from acute COVID-19 illness, but still suffered from lingering symptoms weeks or even months later. These patients, known as long haulers, are now the focus of the post-COVID clinic at Emory’s Executive Park, established by Emory pulmonologists Alex Truong and Adviteeya Dixit to treat the syndrome known as long COVID.

For more insight into long COVID, Jodie Guest, professor and vice chair of the department of epidemiology at Emory’s Rollins School of Public Health, spoke with Truong, who co-directs the post-COVID clinic and is an assistant professor in the Division of Pulmonary and Critical Care Medicine at Emory University School of Medicine.

Their conversation is part of an online video series hosted by Guest, who also leads the Emory COVID-19 Outbreak Response Team, addressing topics related to the COVID-19 pandemic. Watch the full conversation between Guest and Truong here.  

Q: What is long COVID?

A: Long COVID refers to the syndrome experienced by some patients who have recovered from an initial COVID-19 illness but still suffer from lingering symptoms that affect their daily lives for weeks or months later. It is also known as long-haul syndrome and post-acute COVID-19 syndrome. 

Q: How common is long COVID?

A: “It is estimated that up to a third of COVID cases may result in long-term illness,” Guest says, “so in the U.S., this means that 14 million people may be enduring or have already endured consequences of the illness for months or years.” 

Q: What are the symptoms of long COVID?

A: While early symptoms of COVID-19 infection include cough and chest pain, long COVID symptoms can include brain fog, fatigue, chronic pain, shortness of breath, memory loss and confusion. These symptoms may evolve over time. 

Truong says one of the most common symptoms they see at the clinic is fatigue. “A lot of our patients are saying that they have to sleep excessively. They can’t survive a day without a nap, or they’re sleeping 12 to 14 hours.” 

Truong says many long COVID patients also experience brain fog, which involves memory loss and trouble concentrating. “They have difficulty finding words, lose track of sentences in the middle of conversations, as well as difficulty trying to organize their activities of daily living or their jobs.”

Shortness of breath is another common symptom that has been challenging to understand. “Frustratingly, the shortness of breath doesn’t seem to be only because of lung pathology,” Truong says. Rather, it may be related to issues such as fast heartbeat syndromes or overall fatigue, further complicating treatment. 

Q: Is the risk of long COVID related to the severity of COVID-19 illness?

A: Long COVID seems to affect any patient, regardless of the initial severity of their COVID-19 illness. Truong says around half of the patients in his clinic were never hospitalized with COVID-19. The other half of patients were hospitalized, and around one-third of that group spent time in an intensive care unit (ICU). 

Q: Is the risk of long COVID related to age?

A: Truong says he has not seen differences in long COVID related to age. “I think that it’s hitting all over the board,” he says. “There are definitely patients who are older, as well as patients who are younger.”

The average age of patients at the post-COVID clinic is approximately 50 years old. Truong’s oldest patient is 90 years old, and he has several patients who are 18. While the clinic does not treat children, Truong says he knows of patients as young as 14 who are suffering from long COVID symptoms.

Q: What is the hypothesis for why some people experience long COVID?

A: “I think that’s the million-dollar question,” says Truong. “I think if we could answer that, it would help so many people.” 

Although long COVID is not yet fully understood, some progress has been made in the search for answers. “Our group here at Emory recently pre-published a paper that seems to suggest that these patients are having autoimmunity,” Truong says, meaning that long COVID symptoms may be caused by the body’s reaction against residual antibodies.

Q: Is there a way to prevent long COVID?

A: “I think it’s fair to say that the most protective thing you can do to not get long COVID is to make sure you do not get COVID-19,” Guest says. “The safest way to protect yourself and those you love from COVID-19 and long COVID-19 is to get vaccinated if you’ve not done so yet, and to continue to remember to wear your mask if you’re indoors in public spaces.”

“I think that the vaccine will help in terms of preventing you from having COVID infection that leads to long COVID symptoms,” Truong adds. “I feel it’s safe and it’s very effective, and in my patient population it’s been shown to be helpful in keeping them from getting severe illnesses that land them in the hospital or in the ICU.”

Q: What kinds of treatments are available for people with long COVID?

A: Treating patients with long COVID is a challenging and evolving process. “With every week that goes by, we learn a lot more,” Truong says. “It also depends on exactly what symptoms they’re struggling with.” 

Long COVID patients experience such a broad range of symptoms that the post-COVID clinic has recruited specialists from disciplines such as psychology, neurology, physical therapy, cardiology and rheumatology to help provide comprehensive care. “It’s taken a whole group of us to figure out how to take are of these patients,” says Truong.

Truong is working with Emory neuropsychologist Michelle Haddad to better understand issues of brain fog and memory loss related to long COVID. While they are still evaluating causes and treatments, they have found that stimulants such as those used to treat ADHD are helping some patients overcome concentration issues that may contribute to memory loss, as well as fatigue. 

Antihistamines such as Allegra or Zyrtec, in addition to histamine blockers for the stomach like Pepcid or Zantac, have also helped alleviate fatigue, memory loss and shortness of breath in a small number of Truong’s patients. However, it can be difficult to predict which patients will benefit from these medications. 

Treatments for shortness of breath may vary depending on the cause. Some patients whose shortness of breath is caused by lung inflammation and scarring due to COVID pneumonia respond well to steroids, Truong says. Then, “there’s a more puzzling, second category of patients who seem to have shortness of breath related to airway inflammation, fast heart rate or just some idiopathic shortness of breath that we can’t seem to figure out after exhaustive testing.” These patients may respond better to inhaled steroids or medications that slow down the heart rate such as beta blockers. 

Q: How can we support people with long COVID?

A: “I think the worst thing about post-COVID syndrome is that a lot of patients are feeling alone,” Truong says. “I think that it has caused a lot of anxiety and depression. They feel like their health care professionals or physicians are telling them that it’s in their head, or they’ll just get better on their own, or that they can’t do anything about it. I think it leaves these patients feeling very disconnected and lost.” 

“I do know that there are a handful of support groups out there. These support groups are super helpful in helping patients find a community to empathize with them and what they’re going through, as well as sharing resources,” Truong says, while noting it is important to remain wary of misinformation.

“A lot of this is a work in progress, and we’re still trying really hard to figure out how to take care of patients,” he continues. “I want them to know that there are resources out there, that they are not alone, and that what they’re going through is real.”