How Common Are the Long-Term Effects of COVID-19?

So much about the COVID-19 virus (and now, its many variants) is still unclear — including just how long the symptoms and effects of infection really last. However, a few months into this global pandemic, it became increasingly clear that there were people — even those whose initial bout with the virus was mild to moderate — who weren't getting better, even after the virus was deemed undetectable through tests. In fact, many had lingering symptoms. This group of people is often referred to as COVID long haulers and their condition as long hauler syndrome (though those aren't official medical terms).

Tens of thousands of people in the United States alone have experienced lingering symptoms after COVID-19, most commonly fatigue, body aches, shortness of breath, difficulty concentrating, inability to exercise, headache, and difficulty sleeping, according to Harvard Health.

What does it mean to be a COVID-19 long hauler?

The colloquial terms "COVID long hauler" and "long hauler syndrome" typically refer to those COVID patients who have persistent symptoms lasting more than six weeks after their initial infection, explains Denyse Lutchmansingh, M.D., clinical lead of the Post-Covid-19 Recovery Program at Yale Medicine. Dr. Lutchmansingh. The medical community also sometimes refers to these instances as "post-COVID syndrome," though there isn't a consensus among physicians as to a formal definition for this condition, according to Natalie Lambert, Ph.D., associate research professor of biostatistics at Indiana University, who has been compiling data about these so-called COVID long-haulers. This is partially due to the newness of COVID-19 in general — so much is still unknown. The other issue is that only a small part of the long hauler community has been identified, diagnosed, and involved in research — and most people in the research pool are considered "the most severe of cases," says Lambert.

What are the symptoms of COVID long-hauler syndrome?

As part of Lambert's studies, she's published the COVID-19 "Long-Hauler" Symptoms Survey Report, which includes a list of more than 100 of the symptoms reported by those who self-identify as long haulers.

These long-term effects of COVID-19 can include those symptoms listed by the CDC, such as fatigue, shortness of breath, cough, joint pain, chest pain, difficulty concentrating (aka "brain fog"), depression, muscle pain, headache, fever, or heart palpitations. Additionally, less common but more serious COVID long-term effects may include cardiovascular damage, respiratory abnormalities, and kidney injury. There are also reports of dermatologic symptoms such as a COVID rash or — as actress Alyssa Milano has said she's experienced — hair loss from COVID. Additional symptoms include loss of smell or taste, sleep problems, and COVID-19 can cause heart, lung, or brain damage that results in long-term health problems, according to the Mayo Clinic. (Related: I Got Encephalitis As a Result of COVID — and It Nearly Killed Me)

"It is too early to determine if these symptoms are long-lasting or permanent," says Dr. Lutchmansingh. "We know from prior experience with SARS and MERS that patients can have persistent respiratory symptoms, abnormal pulmonary function tests, and reduced exercise capacity more than one year after the initial infection." (SARS-CoV and MERS-CoV were the coronaviruses that spread throughout the world in 2003 and 2012, respectively.)

https://www.instagram.com/tv/CDroDxYAdzx/?hl=en

How common are these long-term effects of  COVID-19?

While it's unclear exactly how many people are suffering from these lingering effects, "it's estimated that about 10 to 14 percent of all patients who have had COVID will have post-COVID syndrome," says Ravindra Ganesh, M.D., who has been treating COVID long-haulers for the last several months at the Mayo Clinic. However, that number could actually be much higher, depending on how someone defines the condition, adds Lambert.

"COVID-19 is a new human disease, and the medical community is still racing to understand it," says William W. Li, M.D., internal medicine physician, scientist, and author of Eat to Beat Disease: The New Science of How Your Body Can Heal Itself. "While a lot has been learned about the illness caused by acute COVID-19 since the pandemic started, the long-term complications are still being cataloged." (Related: How Effective Is the COVID-19 Vaccine?)

How is COVID long-hauler syndrome treated?

Right now, there's no standard of care for those who experience long-term effects of COVID-19 or COVID long-hauler syndrome, and some doctors feel out of their depth treating it since they don't have treatment protocols, says Lambert.

On the bright side, Dr. Lutchmnsingh notes that many patients are improving. "Treatment is still determined on a case by case basis as each patient has a different set of symptoms, the severity of prior infection, and radiological findings," she explains. "The intervention we have found most helpful so far has been a structured physical therapy program and is part of the reason why all patients seen in our post-COVID clinic have both an evaluation with a physician and physical therapist on their first visit." The purpose of physical therapy for recovering COVID-19 patients is to prevent muscle weakness, low exercise endurance, fatigue, and psychological effects such as depression or anxiety that can all result from a prolonged, isolated hospital stay. (Prolonged isolation can lead to negative psychological effects, so one of the goals of physical therapy is to enable patients to make a speedy return to society.)

Because there's no test for long-hauler syndrome and many of the symptoms can be relatively invisible or subjective, some long-haulers struggle to find someone who will take on their treatment. Lambert likens it to other difficult-to-diagnose chronic conditions, including chronic Lyme disease and chronic fatigue syndrome, "where you are not visibly bleeding but suffering from severe pain," she says.

Many doctors still aren't educated about long hauler syndrome and there are very few experts scattered across the country, adds Lambert. And, while post-COVID care centers have started popping up across the country (here's a helpful map), many states still don't have a facility.

As part of her research, Lambert partnered with "Survivor Corps," a public Facebook group with more than 153,000 members who identify as long haulers. "One incredible thing that people get from the group is advice about how to advocate for themselves and also what they do at home to try to treat some of their symptoms," she says.

While many COVID long-haulers eventually feel better, others can suffer for many months, according to the CDC. "Most of the patients with long-term COVID I've seen have been on a slow road to recovery, although none of them have returned to normal yet," says Dr. Li. "But they have had improvements, so it should be possible to restore them back to health." (Related: Do Disinfectant Wipes Kill Viruses?)

One thing's clear: COVID-19 will have a long-term impact on the health care system. "It is staggering to think about the implications of long-hauler syndrome," says Dr. Li. Just think about it: If somewhere between 10 and 80 percent of people diagnosed with COVID suffer from one or more of these long-lasting symptoms, there could be "tens of millions" of people who are living with the lingering effects and long-term damage, he says.

Lambert hopes the medical community can shift their attention to find a solution for these long-hauler COVID sufferers. "It comes to a certain point where you just don't care about what the cause is," she says. "We just have to find ways to help people. We need to learn the underlying mechanisms certainly, but if people are so sick, we just need to focus on things that will help them feel better."

The information in this story is accurate as of press time. As updates about coronavirus COVID-19 continue to evolve, it’s possible that some information and recommendations in this story have changed since initial publication. We encourage you to check in regularly with resources such as the CDC, the WHO, and your local public health department for the most up-to-date data and recommendations.