While the majority of people diagnosed with COVID-19 have only mild symptoms, according to the Centers for Disease Control and Prevention (CDC), others are hit much harder by the disease.
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Some people who've been infected with COVID-19 have symptoms that linger far past the standard recovery time of two weeks (or three to six weeks for those with more severe disease), according to a report by the WHO-China Joint Mission on the Coronavirus Disease. These people, dubbed "long-haulers," have been experiencing COVID-19 symptoms for months, even though the disease has come and gone.
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So, What Is 'Long COVID?'
Long-hauler syndrome is not a new thing. In fact, it's been seen with other viral illnesses, including SARS-CoV, which was first identified in 2003, according to an Emerging Infectious Diseases report.
When it comes to COVID-19, the official term for "long COVID" is post-acute sequelae SARS-CoV-2 infection (or PASC), per the National Institutes of Health.
While there are no firm statistics on PASC yet, one small July 2020 study in JAMA analyzed 179 people with severe COVID-19 that required hospitalization and found that more than 87 percent experienced persistent symptoms that lingered for at least two months.
Another August 2020 study in The BMJ found that an estimated 10 percent of all COVID-19 patients experience symptoms that linger past infection.
COVID-19 symptoms vary, but many long-haulers report extreme fatigue, chest tightness, "brain fog" and dizziness, notes Rany Condos, MD, a pulmonary specialist at NYU Langone Health.
"Most long-hauler patients complain of an inability to improve to their prior level of activity and feel frustrated and depressed by their slow progress," Dr. Condos says. "Their continued symptoms have profound effects on their families, their livelihood and their ability to feel normal."
While there's still much we don't know about the long-term consequences of COVID-19, medical experts are starting to put together the pieces to paint a clearer picture day by day. Here's what we know now.
'Long COVID' Looks Different for Everyone
"At the beginning of the coronavirus outbreak, we thought that COVID-19 was a respiratory disease that leads to pneumonia, sepsis and in worse cases, death, and that those infected would recover within two or three weeks," says Leo Nissola, MD, medical expert, immunotherapy scientist and advisor/investigator for COVID Act Now and the National Convalescence Plasma Project. "Many months later, it is now clear that there are thousands of people who have symptoms months after becoming infected, which is puzzling."
Although most young people recover quickly, Dr. Nissola says he has seen patients experiencing lingering fatigue and other chronic difficulties, like lung disease. And other people have reported symptoms such as coughing, chronic fatigue, joint pain and body aches, prolonged loss of taste and smell, shortness of breath and headaches and brain fog, according to UCDavis Health.
While there's no "typical" disease expectations for COVID-19, research, including one September 2020 study in Life Sciences, is showing that a patient's immune response has an effect on symptoms.
Middle-Aged Women May Be More Prone to PASC
While it's been well-documented that older adults suffer greater health consequences of COVID-19, an October 2020 preprint in medRxiv found that middle-aged people who identify as women may fare worse in the long term.
The study, led by Claire Steves, MD, at King's College London, analyzed data from almost 5,000 subjects who tested positive for the virus and found that women ages 50 to 60 may be at most significant risk of developing "long COVID." It should be noted, though, that the study hasn't yet been peer-reviewed, so the results should be taken with a grain of salt.
"Generally, older age and having multiple symptoms in the first week are associated with an increased risk of remaining health issues," Dr. Nissola says. "However, other research, including an April 2020 study published in the journal Frontiers in Public Health, showed that women are twice as likely to have COVID symptoms that last for over 30 days compared to men."
Long-Haulers May Have Shortness of Breath, but It's Not Necessarily Lung Damage
One July 2020 EClinicalMedicine study out of China found that about 70 percent of hospitalized COVID-19 patients had abnormal lung scans three months after leaving the hospital. But there is reason to be optimistic, says Jacob Teitelbaum, MD, a board-certified internist and expert on chronic fatigue syndrome.
Research published by the European Lung Foundation in September 2020 suggests lung tissue can heal up post-COVID.
"In addition, much of the shortness of breath may be coming from chronic fatigue syndrome or even anxiety, both of which often cause breathlessness despite normal lung function," Dr. Teitelbaum says.
If you have difficulty sleeping, despite excessive tiredness, for three months or more, especially if it does not resolve with extended self-care such as a vacation, Dr. Teitelbaum says this points to chronic fatigue syndrome.
"Viruses are a common trigger that trips the hypothalamic circuit breaker, which leads to chronic fatigue syndrome, so it is no surprise that we are seeing post-viral CFS from COVID-19," he adds.
He recommends investing in a pulse oximeter to check your oxygen level when you are short of breath.
"During shortness of breath, simply put it on your fingertip, and if your oxygen saturation is measuring over 95 percent, even with walking around the room a bit, the shortness of breath is coming from anxiety — not COVID," he says.
'Brain Fog' Does Not Necessarily Reflect Brain Injury
One of the persistent symptoms of COVID-19 that many long-haulers report is "brain fog," which shows up as difficulty with word finding, word substitution and poor short-term memory, Dr. Teitelbaum says.
At the onset of the pandemic, many health care professionals were concerned with potential long-term brain effects, but an August 2020 report in The Clinical Neuropsychologist found that the brain fog associated with COVID-19 may actually be an indication of post-traumatic stress disorder (PTSD). This is especially common in people who have been hospitalized in the intensive care unit, Dr. Teitelbaum says.
If you have gone through severe physical or emotional trauma and find yourself emotionally detached but also hypervigilant, you may be experiencing PTSD, according to Dr. Teitelbaum.
"Symptoms may also include intrusive memories (flashbacks), negative thoughts and mood with a sense of hopelessness, and being easily startled or frightened. PTSD can be associated with secondary fibromyalgia as well, and the combination can be part of long-hauler syndrome," he says.
There Is No Cure for 'Long COVID,' but There Is Support Out There
As with any new illness, only time and a coordinated effort can give us a better understanding of COVID-19 and its long-term effects. Dr. Condos recommends closely monitoring your symptoms and trying as best as you can to describe what you feel.
"Bring your concerns to your doctor's attention and remember that this is a new disease, which means we still don't have all the answers," she says.
If you continue to feel unwell, she recommends seeking out one of the post-COVID clinics being set up in most major medical centers. These clinics help address long-term symptoms of COVID-19, including difficulty breathing, brain fog and memory loss and heart issues.
There are also several Facebook groups being set up to create online opportunities for long-haulers to connect and offer support to one another.
Read more stories to help you navigate the novel coronavirus pandemic:
- Centers for Disease Control and Prevention: "Severe Outcomes Among Patients With Coronavirus Disease 2019"
- World Health Organization: "WHO-China Joint Mission on the Coronavirus Disease"
- Emerging Infectious Diseases: "Long-term SARS Coronavirus Excretion from Patient Cohort, China"
- JAMA: "Persistent Symptoms in Patients After Acute COVID-19"
- The Lancet: "Long-term consequences of COVID-19: research needs"
- Life Sciences: "The immune system and COVID-19: Friend or foe?"
- The Lancet: "Clinical course and risk factors for mortality of adult inpatients with COVID-19 in Wuhan, China: a retrospective cohort study"
- medRxiv: "Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App"
- Frontiers in Public Health: "Gender Differences in Patients With COVID-19: Focus on Severity and Mortality"
- EClinicalMedicine: "Follow-up study of the pulmonary function and related physiological characteristics of COVID-19 survivors three months after recovery"
- European Lung Foundation: "COVID-19 patients suffer long-term lung and heart damage but it can improve with time"
- Post-traumatic stress disorder: A differential diagnostic consideration for COVID-19 survivors
- The BMJ: "Management of post-acute covid-19 in primary care"
- Long haulers: Why some people experience long-term coronavirus symptoms