If you had COVID-19, you may have bounced back pretty quickly. If so, that’s great! You were one of the lucky ones. But if you found that fatigue, weakness, or other symptoms lingered far longer than you thought they would, you’re in good company, because that’s the case for a growing number of people who have had COVID-19. Weeks—even months—after their diagnosis, their symptoms persist. They’re long-haulers. That is, they have a syndrome is formally known as post-acute sequelae of SARS-CoV-2 infection (PASC) but more commonly is known as “long COVID.” Other people refer to it by a whole host of names, including post-COVID syndrome, chronic COVID, long-haul COVID, or long-term COVID. But whatever you call it, it describes the situation when your symptoms occur or hang on long after your initial case of COVID. And everyone still has a lot to learn about it. So what do we know so far? Read on to find out.
What are the symptoms of long COVID?
The Centers for Disease Control and Prevention (CDC) suggests that the definition of post-COVID syndrome is when “new, recurring or ongoing” symptoms occur four or more weeks after infection. A whole array of symptoms is linked with long COVID, but some of the most commonly reported symptoms include:
FatigueDifficulty breathingBrain fog or concentration problemsCoughJoint painMuscle painChest painHeadacheFeverDepression or anxietyPalpitationsLoss of tasteLoss of smellDizziness upon standing
A recent analysis of studies published in JAMA Network Open found that fatigue, shortness of breath, and sleep disorders were some of the most common symptoms that persisted beyond an acute COVID infection. Some people with post-acute or long COVID may just experience one symptom, but many people struggle with multiple symptoms. And it can be challenging for healthcare providers to differentiate between post-COVID symptoms and those from another condition. Dr.Hector Bonilla, MD, has noticed that many patients with long COVID have similar symptoms to those of his patients with chronic fatigue syndrome (also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). They’re experiencing severe fatigue, brain fog, difficulty concentrating or processing information, even recalling certain words, says Bonilla, an infectious disease physician and clinical associate professor of medicine at Stanford University School of Medicine. To further complicate matters, you might not even be aware of certain ways the virus has affected your body after a COVID infection. For example, you could have sustained damage to blood vessels or various organ systems, but you wouldn’t be able to detect that on your own. And that could have consequences in the future, explains Dr. Steven Goodman, MD, MHS, PhD, associate dean for clinical and translational research at Stanford University School of Medicine. There’s also no one way to treat long COVID, notes Dr. Kristin Englund, MD, an infectious disease physician with the Cleveland Clinic. One person might have heart symptoms, or their lungs may have been affected, or they may need some type of physical rehabilitation. So, doctors have to develop individualized care plans for everyone.
How many people have long COVID?
The short answer is that we don’t know for sure how many people have long COVID. But the numbers are growing. “At this stage, we’re hearing reports that (conservatively) about 10% of all non-hospitalized cases end in long COVID,” says Dr. David Putrino, PhD, Director of Innovation for the Department of Rehabilitation and Human Performance at Mount Sinai Health System.“With that in mind, the CDC has estimated that around 4 million cases could be present in the U.S.” Dr. Putrino helped develop Mount Sinai Health System’s post-COVID-19 care center in Union Square in 2020 and continues to work with patients with symptoms of long COVID. “It’s unfortunately pervasive,” says Dr. Englund. “This is going to be an entity that persists and stays with us unfortunately for quite some time to come.” An article published in late June in the British Medical Journal reported the recent findings from the investigators of the REACT-2 study in the U.K. They suggested that as many as 2 million people in England could be affected by persistent long COVID symptoms. Although their findings have not yet been peer-reviewed and published in a journal, the results have generated a lot of concern. The researchers with Imperial College London surveyed more than 500,000 people in England between September 2020 and February 2021. They found that about 6 percent of the people surveyed reported that they developed at least one long-term Covid symptom. They also found that women were more likely than men to develop long COVID, as were smokers, people who were overweight, people who had been admitted to the hospital, and people who were living in “deprived areas.” “We’re all still trying to figure out the demographics of which patients may be more likely to have longer-term symptoms,” says Dr. Englund.
Could you get long COVID?
You may be wondering what your own personal risk profile is for long COVID. While researchers are still learning about who may be more likely to develop long COVID, no one group of people appears to be immune. “There’s no one who is too young and healthy to not go on and get post-acute COVID syndrome,” says Dr. Putrino. The Centers for Disease Control and Prevention (CDC) notes that even people who had mild or asymptomatic cases can develop the symptoms of post-acute COVID or long COVID. If you know you had COVID and you start to notice some symptoms—either new ones or persistent ones—a month or so after your initial diagnosis, check in with your primary care provider. “If you have lingering symptoms after COVID, you do want to see your doctor so they can rule out other things,” says Dr. Bonilla.
The knowledge keeps coming
There’s still so much to learn about long COVID, including whether vaccination could reduce the risk of long COVID or provide any protective benefits, says Dr. Goodman, who pointed out that the various COVID vaccines haven’t even been in use for an entire year. “We just literally have not had enough time to follow up on these patients en masse to understand what the longer course is,” says Dr. Goodman. “It clearly is a syndrome that hangs on, that lasts.” As time passes, scientists are learning more about the impact that this syndrome has on people. For example, a recent analysis published in the journal JAMA Network Open found that it can take months for a person’s resting heart rate to return to normal after having COVID. And a new study in the Journal of Ultrasound in Medicine suggested that ultrasounds could be used to detect liver injury that results from COVID-19 infection, and this information could help eventually improve diagnosis and treatment. In February, the National Institutes of Health (NIH) launched the PASC Initiative so scientists and researchers could collaborate and identify not just the causes of long COVID but also possible methods of prevention and treatment. And researchers hope the growing body of knowledge will help them develop better ways to address the problem. In the meantime, experts urge everyone who hasn’t yet been vaccinated for COVID to get vaccinated. Says Dr. Englund, “We have no magic bullet to treat. As a result, people need to do everything they can to avoid getting COVID. Even if they think they’re healthy and won’t have a bad case, that doesn’t mean they won’t go on to develop long COVID.” It’s important not to downplay the potential impact of long COVID, says Dr. Goodman. Especially with younger people, they need to understand that the threat of long COVID is real. This is a “potentially life-altering disease,” he says. Even if you’ve already had COVID, you should get vaccinated, says Dr. Bonilla. “The vaccine may protect against the long-term effects of COVID,” he adds. “We don’t know yet, but it’s a possible benefit.” Next up: Everything You Need to Know About the COVID Delta Variant, Including How Protected You Are if You’re Vaccinated
Sources
Hector Bonilla, MD, Stanford University School of MedicineKristin Englund, MD, Cleveland ClinicSteven Goodman, MD, MPH, PhD, Stanford University School of MedicineDavid Putrino, PhD, PT, Mount Sinai Health SystemAssessment of the Frequency and Variety of Persistent Symptoms Among Patients With COVID-19A Systematic Review. JAMA Network Open.Assessment of Prolonged Physiological and Behavioral Changes Associated With COVID-19 Infection. JAMA Network Open.COVID-19: Third of people infected have long term symptoms. British Medical Journal.Persistent symptoms following SARS-CoV-2 infection in a random community sample of 508,707 people. Imperial College London.Post-COVID-19 Liver Injury. Journal of Ultrasound in Medicine.When COVID symptoms linger. Centers for Disease Control and Prevention
