You can have COVID for a long time and not even know it

lIt took a long time for Rachel Bean to fully accept that she did Long COVID† Bean, 35, contracted the virus in May 2020, when most experts still said COVID-19 causes either a life-threatening illness or milder symptoms that disappear within a few weeks. Bean’s acute case was asymptomatic—so as time went on and she felt unwell, with a rapid heartbeat and unrelenting fatigue, she thought there must be another explanation.

Then, in August 2020, she joined an online Lung COVID support group and found that plenty of other people hadn’t fully recovered from COVID-19 either. But many of their symptoms seemed different from hers, so she persevered. Finally, in late 2020 — shortly before her illness forced her to quit her job as a social worker — Bean asked her doctor to refer her to a Long COVID treatment clinic

Today, Bean is struck by how many people still don’t realize their health problems could be signs of Lung COVID. She has spoken with people who maintain that they have fully recovered from COVID-19, but also complain of classic lung COVID symptoms such as fatigue and cognitive impairment. “People don’t necessarily connect the dots,” Bean says.

Experts say a lack of recognition could lead to some Lung COVID cases going undiagnosed. “People are bad at correlation if they don’t think about it all the time,” said Hannah Davis, a machine learning expert who is part of the Lung COVID Patient-driven research collaboration† “If you had COVID … and then two months later you stop driving, you don’t necessarily have to link it to that.”

Not every health problem is a sign of Lung COVID. Thousands of people around the world are diagnosed with COVID-19 every day, and many are recovering with no lingering problems. Others experience health problems due to, but not related to, their infections because all the things that made people sick before the pandemic have not gone away.

But Long COVID affects more people than many realize. In the US alone, about one in five adults with a known previous case of COVID-19 currently have long-lasting COVID symptoms, according to recent data from the National Center for Health Statistics. Others may live with the condition without realizing it.

Testing for COVID-19 is now as easy as wipe your nose at home† Diagnosing Lung COVID is more complicated, as no test can detect it.

Public health groups define the condition somewhat differently, but their criteria usually boil down to having symptoms that did not exist prior to confirmed or suspected SARS-CoV-2 infection, persist for at least a few months after infection, and cannot be explained by anything else .

By the summer of 2020, it is estimated that half of the cases were not formally diagnosed an article co-authored by British researcher Trish Greenhalgh. It’s hard to say exactly what that percentage is today, but it’s probably still significant. There are an estimated 2 million people with Lung COVID in the UK, which in Greenhalgh’s estimate means that each full-time GP there cares about 65 long-haul transporters. But fewer are diagnosed correctly, due to factors such as patients not seeking care, doctors missing the condition, or doctors entering it into patient records as something else, she explains.

Elisa Perego, an honorary researcher in archeology at University College London who coined the term “Long Covid” to describe her own condition, says there’s another problem: Many people really have no idea they have Lung COVID can have.

Policymakers, public health officials and the media “have often portrayed covid as a brief, flu-like illness, especially among young people,” Perego wrote in an email. As a result, months later, people may not be able to link a case of COVID-19 to health problems, especially if they have mild initial illness or disease. are fully vaccinated† other people may be asymptomatically infected or have received a false negative test result, so they don’t know at all that they had COVID-19.

Long COVID is also not always a linear condition. Some people get COVID-19 and never fully recover, while others seem better and then relapse – sometimes several times.

There is also a common misconception that long-lasting COVID symptoms are a continuation of the problems people experience right after they get sick, such as a cough or fever. That’s the case for some people, but many others develop new symptoms, including fatigue, chronic pain, and neurological or cognitive problems. “It’s usually more than one symptom and usually more than one system in the body,” said Nisreen Alwan, an associate professor of public health at the British University of Southampton, who has had lung COVID herself.

These symptoms are also often simplified. Labels like “fatigue” or “brain fog” don’t always reflect the more distinctive experiences of long-haul carriers, such as crashing after physical activity (known as post-exertional malaise) or experiencing cognitive impairment such as memory loss. In addition, media coverage does not always reflect the range of severity associated with Lung COVID, and focuses only on the most severe cases. If people don’t see their experiences reflected in news articles or lists of symptoms, they may assume something else is going on, Alwan says.

Research shows that more people are found to have post-COVID fatigue and cognitive impairment when studies screen for these symptoms using objective, as opposed to subjective or self-reported, measures. That finding suggests that some people miss or minimize their own symptoms, Davis says.

People of color seem most likely to be missed, says Dr. Zeina Chemali, director of neuropsychiatry clinics at Massachusetts General Hospital and co-author of a recent study on Long COVID symptoms. Three-quarters of the people in her study were white, educated women, which “speaks volumes about the differences in care and access,” she says.

While some people don’t realize they could have Lung COVID, others refuse to accept it — and competence plays a part in that, Perego says. “Discrimination against people with disabilities in society and the fear of being permanently ill can make it more difficult to accept a long-term illness and the risk of never recovering,” she wrote.

Nearly all long-haul carriers experience stigma at some point, according to an investigation Alwan co-authored yet to be peer reviewed. That can mean stigma from others — such as loved ones who are uncomfortable with or disbelieve in a lengthy COVID diagnosis — or internalized stigma, such as being ashamed of someone’s illness or physical limitations.

The medical establishment often doesn’t make things any easier, as some patients still face disbelief or lack of knowledge from their doctors. “This is one area where you really need to be on top of the research,” Davis says. “The average doctor just doesn’t seem to do that,” leading to cases being missed, rejected, or misunderstood.

Even people who have been correctly diagnosed with Lung COVID don’t have great treatment options; there is no known cure for the condition, although some of the associated symptoms can be treated. But Alwan says getting a diagnosis is important for other reasons. It can make people eligible for disability benefits and sick payand a diagnosis may prompt a patient’s doctors to perform more thorough physical examinations that may reveal treatable problems.

Better recognition, diagnosis and public education about Lung COVID could help people who are currently suffering in silence. “The fear is that you might miss those who need the most support,” Alwan says. “It may be that people who recognize that they have Lung COVID are not the only people who really need access to care.”

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write to Jamie Ducharme at [email protected]

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