By Allyson Chiu February 28, 2020
[Excerpt] The condition known as long covid continues to frustrate its sufferers, baffle scientists and alarm people who are concerned about being infected by the coronavirus. The term, a widely used catchall phrase for persistent symptoms that can range from mild to debilitating and last for weeks, months or longer, is technically known as Post-Acute Sequelae of SARS-CoV-2 infection, or PASC. But scientists say much remains unknown about long covid, which is also referred to colloquially as “long-haul covid,” “long-term covid,” “post-covid conditions” and “post-covid syndrome,” among other names.
“This is a condition that we don’t even have an agreed upon name for yet, and we don’t have any understanding really of what’s going on down at a chemical level,” said Greg Vanichkachorn, medical director of Mayo Clinic’s COVID-19 Activity Rehabilitation Program. “So, until we have that kind of understanding, it’s really important that we not make quick decisions about what long covid can or can’t be.”
The National Institutes of Health has launched a research initiative to study the potential consequences of being infected with the coronavirus, including long covid, with the goal of identifying causes as well as means of prevention and treatment. It is building a nationwide study population to conduct that research.
In the meantime, experts said, long covid shouldn’t be dismissed or taken lightly. “This is real, definable, and causes significant patient suffering,” said Bruce Levy, chief of the division of pulmonary and critical care medicine at Brigham and Women’s Hospital in Boston. “The majority of people who got acutely infected felt totally normal before they had their infection, and now they don’t feel normal. That’s jarring.”
The Washington Post spoke with experts who are researching and treating long covid, and compiled answers to some of the most commonly asked questions about the condition. Please keep in mind that because covid and its potential long-term effects are continuing to be studied and understood, many of these answers are not definitive, and information is likely to change.
WHAT TO KNOW
- What is long covid?
- How is long-haul covid diagnosed?
- How many people get long covid?
- Are there risk factors?
- What about long covid in children?
- What is the treatment for long covid?
“It kind of depends on who you ask right now,” Vanichkachorn said, “and that’s a reflection of how much, or how little, we know about this condition right now.”
Generally, he said, long covid is “a state where a person experiences symptoms greater than what we would normally expect for the normal recovery from covid.”
But some experts consider symptoms that linger for four weeks or longer to be long covid while others say symptoms should persist for at least 12 weeks before a patient is diagnosed with the condition.
Even prominent public health agencies have somewhat different definitions. For example, one definition from the World Health Organization states:
“Post COVID-19 condition occurs individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis.”
Meanwhile, the Centers for Disease Control and Prevention defines the condition as:
Post-COVID conditions are a wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected with the virus that causes COVID-19. Even people who did not have COVID-19 symptoms in the days or weeks after they were infected can have post-COVID conditions. These conditions can present as different types and combinations of health problems for different lengths of time.
The CDC lists more than a dozen symptoms potentially associated with long covid, noting that they can be new or ongoing, and can occur in anyone who was infected with the coronavirus, regardless of severity. The WHO notes that symptoms typically have an impact on everyday functioning and they may fluctuate or relapse over time.
“The most hallmark feature is profound fatigue,” Vanichkachorn said. Patients have reported feeling exhausted for hours or days after doing simple tasks, such as taking a dog for a walk around the block.
Other common symptoms include “brain fog,” or difficulties with cognition and memory, pulmonary issues such as shortness of breath or lingering cough, heart-related problems and gastrointestinal complaints.
In other words, long covid can affect “almost every single body system,” said Daniel Karel, a primary care provider and clinical instructor in medicine in the division of general internal medicine at George Washington University.
How many people get long covid?
It’s been difficult to pin down what percentage of people who contract the coronavirus go on to develop long-term symptoms of covid-19, experts said, partly because the condition is still fairly new. Existing research figures and estimates from experts range from single-digit percentages to upward of 30, 40 or 50 percent.
“Plenty of young people with no other medical problems can come down with very, very serious and life-altering symptoms,” Karel said. “You don’t have to be sick. You could be young, you could be healthy and unfortunately really suffer.”