While it’s tempting to think of Covid-19 as being in our collective rearview mirror, especially after the Public Health Emergency (PHE) was declared over on May 11, it’s certainly not. And its offshoot, long Covid, continues to present major problems for untold numbers of people. The CDC estimates that as of last June, one in five people with prior Covid had experienced the debilitating effects of this poorly understood and puzzling condition; other estimates put the number between 5 and 15 percent of that population.
What can we do about long Covid? A first step is to be able to define and diagnose it: Are the symptoms one is experiencing actually long Covid, or something else? It’s not an easy answer. Defining the condition is a key issue for researchers, too. Currently, long Covid is simply a name we’ve assigned to an extensive constellation of myriad signs and symptoms—and if there’s one thing that researchers can agree on regarding long Covid, it’s that they can’t agree exactly on how to define it. In fact, the U.S., the U.K., and the World Health Organization each have their own definitions.
The end of May did see progress on this front, as a study published in JAMA designated a dozen specific symptoms most closely correlated with long Covid: malaise after exertion, fatigue, brain fog, dizziness, gastrointestinal symptoms, heart palpitations, changes in sexual desire, loss of smell or taste, increased thirst, chronic cough, chest pain, and abnormal movements.
According to the CDC and the U.S. Department of Health and Human Services, long Covid “is broadly defined as signs, symptoms, and conditions that continue or develop after initial Covid-19. … The signs, symptoms, and conditions are present four weeks or more after the initial phase of infection; may be multisystemic; and may present with a relapsing–remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection. Long Covid is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.”
In other words: We don’t know what causes it, we don’t know how often it occurs, and we don’t know how long it lasts. And we can reasonably expect that the knowledge gap will be exacerbated over time as state-by-state reporting policies and requirements, and Covid testing in general, decline after cessation of the PHE declaration.
If all that weren’t confusing enough, the CDC points out that “people with long Covid may develop or continue to have symptoms that are hard to explain and manage,” while tests (like blood work, X-rays, and electrocardiograms) may show as normal. The CDC goes on to say that long Covid symptoms are similar to those reported by people with myalgic encephalomyelitis (more commonly known as chronic fatigue syndrome) and other “poorly understood chronic illnesses that may occur after other infections.”
And here’s a particularly telling point from the CDC: “People with these unexplained symptoms may be misunderstood by their healthcare providers, which can result in a long time for them to get a diagnosis and receive appropriate care or treatment.” That’s an extremely important thing to bear in mind—that healthcare providers may not be adequately knowledgeable about long Covid.
Who, then, needs to be mindful of long Covid? Pretty much anyone who has had a bout of Covid. That’s because anyone who’s had the illness can develop it. Certain individuals, however, are at greater risk. For one, it’s much more common to see long Covid in someone who had a serious case of Covid. Another differentiator: If you’re female, you’re significantly more likely to get long Covid. And another: If you have underlying conditions, like obesity, diabetes, or chronic heart or lung problems, you’re more likely to get long Covid. People with generalized anxiety disorder, one of the most common diagnoses in the U.S., are also more likely to experience long Covid.
So if any of these extra risk factors apply to you, be especially alert to signs/symptoms you might have long Covid. But anyone who has persisting signs or symptoms should seek medical attention as soon as possible. If your doctor is not familiar with long Covid, it’s important to ask for a prompt referral to a specialist, like a neurologist or infectious disease specialist, depending on what your symptoms are.
The good news is, there are steps you can take to reduce your odds of getting long Covid. Most important, of course, is to avoid Covid in the first place (not always possible, admittedly). Next, make sure you’re up to date on your vaccines since that’s been shown to lower the risk of developing long Covid if you do come down with Covid. The latest (bivalent) booster helps, so take advantage of it if you can. And if you develop Covid and are a candidate for the Covid-fighting drug Paxlovid, take it: It may also reduce the chances of long Covid.
And, of course, if you develop long Covid, it’s important to be vigilant and proactive and make sure to get whatever help you need as quickly as possible.
