Reports continue to emerge on the potential hazards of “long COVID” and how lingering symptoms like extreme fatigue and painful headaches can disrupt people’s lives, even months after COVID-19 infection. But are scientists any closer to understanding what long COVID actually is?
“We are,” says Michael Gottlieb, MD, an emergency medicine physician and researcher at RUSH University Medical Center. “But the challenge with long COVID is that it’s not just a single, isolated condition that affects everyone the same way. It’s more so a series of different experiences for different people.”
Here, Gottlieb explains what we know so far about long COVID and how RUSH researchers aim to better understand the wide range of patients’ experiences through one of the largest U.S. studies on the long-term effects of COVID-19 to date.
What is long COVID?
The Centers for Disease Control and Prevention defines long COVID as “physical and mental health consequences experienced by some patients that are present four or more weeks after SARS-CoV-2 infection,” including by patients who initially only had mild symptoms or who didn’t have any symptoms.
Interestingly, SARS-CoV-2 (the virus that causes COVID-19) isn’t the only bug that can trigger chronic issues after infection. “There are a number of other viral conditions, including the flu, that can cause symptoms that last for three months or longer,” Gottlieb says.
What are some common symptoms of long COVID, and how many people get it?
Long COVID can cause a constellation of symptoms. Gottlieb says the most common include:
- Loss of taste or smell
- Muscle aches
- Shortness of breath
Other symptoms that people may experience with long COVID include chest pain, rapid heartbeat, brain fog, rashes, menstrual changes, depression and digestive issues.
As many as 10% to 25% of people who get COVID-19 may have at least one symptom that hangs on for four weeks or more following infection, Gottlieb says.
What should I do if I think I have long COVID?
If you have had symptoms like fatigue, headaches, muscle aches or shortness of breath for at least four weeks after COVID-19, you may want to reach out to your primary care provider, Gottlieb advises. “Your primary care provider can help you determine if you need to see another specialist, depending on your symptoms,” he says.
Can COVID-19 raise the risk for other chronic conditions like diabetes or dementia?
The evidence is still evolving, but data suggests that COVID-19 may be associated with a higher risk for developing diabetes, heart conditions, Alzheimer’s disease and mental health issues, Gottlieb says.
Still, it’s important to understand that this is early data, and scientists don’t know the long-term implications of these associations or whether they may be caused by other factors, he adds.
Do certain people have a higher risk for developing long COVID?
Early research shows some people are more likely to get long COVID, Gottlieb says. This includes:
- People who are unvaccinated
- Older adults
- Those with chronic medical conditions
“While you cannot change your age or chronic medical conditions, you can reduce your risk for long COVID by getting vaccinated,” Gottlieb says. One study from Italy found that the risk for developing long COVID was as high as 42% for unvaccinated adults, compared with 16% for adults who were vaccinated and had one booster.
Do long COVID symptoms go away?
It’s not clear how long symptoms usually last, but a new research study led by RUSH researchers called INSPIRE — which was recognized by the Biden Administration in April — aims to better understand what happens to patients with long COVID over time.
INSPIRE stands for Innovative Support for Patients with SARS-CoV-2 Infections Registry. Funded by the CDC, INSPIRE is one of the largest and most comprehensive studies on the long-term effects of COVID-19. Gottlieb and RUSH infectious diseases physician Robert Weinstein, MD, are leading the study.
For INSPIRE, researchers are following 6,000 patients from eight institutions across the United States for up to 18 months. “Unlike other studies that rely predominantly on information from electronic health records, we also send online surveys to patients every three months so we can understand the patients’ lived experiences over time,” Gottlieb says. Researchers are looking at outcomes like emergency department visits, hospitalizations and effects on physical and mental health for patients who test positive for COVID-19, compared with those who test negative.
Gottlieb expects some findings from INSPIRE on the long-term effects of COVID-19 to be published by the end of this year (some early data is available on the CDC’s website).
“For clinicians, we hope the results help them better understand the disease so they can better advise and improve treatment for these patients,” Gottlieb says. “For policymakers, we hope the results will help them better plan how to use our public health resources. And, for patients, we want to reassure them that they are not alone — a lot of people are going through this.”
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