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Exploring long COVID, Part 1: Why don't we know more about it?

Dr. Dwayne Gordon is lead physician at AdventHealth's Post COVID Clinic in Central Florida.
Dr. Dwayne Gordon is lead physician at AdventHealth's Post COVID Clinic. "A lot of us are still wrapping our minds completely around this concept of long-haul COVID, though it is a very real entity," he says.

There's still not a lot of data available as to why some people get long COVID and others don't. In the opening segment of a series, we ask some Central Florida doctors to help define this frustrating aspect of the pandemic.

More than 1 million Americans have died from COVID-19 since President Donald Trump declared it a national emergency three years ago. That includes 87,000 Floridians. Among the survivors, are those with long-haul COVID, or long COVID, a phenomenon still not fully understood.

But what is long COVID?

The Centers for Disease Control and Prevention defines it as a wide range of ongoing health problems with conditions lasting weeks, months or years after being infected with the virus that causes COVID-19.

Dr. Dwayne Gordon, lead physician of AdventHealth's Post-COVID Clinic in Orlando, attempted to define long COVID concisely during a Facebook Live segment.

"Long-haul COVID is a constellation of symptoms that is not explained by an alternative diagnosis," Gordon said. "So after a thorough workup you haven't found an alternative diagnosis, as well as lasting at least three months from the initial diagnosis."

However, there's still not a lot of data available as to why some people get long COVID and others don't.

"A lot of us are still wrapping our minds completely around this concept of long-haul COVID, though it is a very real entity," Gordon said.

The syndrome includes a wide array of symptoms ranging from breathlessness and chest pain to an inability to smell or taste and difficulties concentrating or short-term memory issues in a phenomenon described as "brain fog."

How big of a deal is it?

According to the Kaiser Family Foundation, of the 103 million COVID-19 cases in America, nearly 30 million Americans, or about 29%, either had or have long COVID symptoms.

Gordon says that of the 300,000 COVID patients, AdventHealth has had in three years, around 18,000, or about 6.2%, of them, have been long haulers.

"The demand has been fairly tremendous," Gordon said. "There is that need, as I was mentioning, and you know, it has been incredible to see how many people have been looking around for answers and for support."

When did long COVID come around?

The name “long COVID” was created by the people experiencing the syndrome in the spring of 2020 to describe patients' journeys of not recovering, according to the National Library of Medicine.

Long COVID wasn’t fully acknowledged by health experts until late 2021, according to Arch Mainous, vice chair of community health at the University of Florida. In October of that year the CDC officially acknowledged long COVID with a diagnosis code, allowing it to be tracked, Mainous said.

"I think that long COVID was an outcome that people didn't expect," Mainous said. "It took a while to get to that point, we were very focused on stopping COVID. And then over time, the amount of evidence just continued to build to the point where then we said, Well, I think this is a real thing. And that's when they released the diagnosis code."

Trouble identifying it

Dr. Kenneth Alexander, chief of pediatric infectious diseases at Nemours Children’s Hospital in Orlando, said properly documenting long COVID can be difficult due to its similar appearance to chronic fatigue syndrome, which is also hard to define.

"If you could really explain what chronic fatigue syndrome is, I'd get you into the National Academy of Sciences. So we really don't know. But we know it's real," Alexander said.

Chronic fatigue syndrome is a complex medical condition characterized by severe fatigue that lasts for at least six months and is not relieved by rest, and characterized a range of other symptoms such as pain, headaches, and memory problems, according to the CDC.

Like long COVID, chronic fatigue can be tricky to diagnose as it doesn't always have a physical manifestation that can be readily seen.

Some of the symptoms it shares with long COVID include trouble sleeping, difficulty concentrating and dizziness.

"Chronic fatigue is in many ways diagnosed not by its cause, because we don't know what that is, but by its manifestations, and the manifestations are fatigue myalgias (muscle pain) that disrupt life," Alexander said.

Chronic fatigue can be brought on by social or physical trauma. Technically speaking, a patient could have both chronic fatigue and long COVID, Alexander said.

"The challenge we have is that we're, we're still not super good at dealing with these things," he said. "What I would say is, the sooner we see somebody, the sooner we see those symptoms of life disruption appearing, the better we are at helping these people get life back on the rails."

Part of what makes long COVID perplexing is that it's so new, Alexander said. He saw the same thing happen when HIV emerged.

"I think what people are seeing is, is medical history being made as we look at a new disease unfolding before us, and we, we learn about it," Alexander said.

Long COVID in Central Florida

Dr. Herman Gaztambide, director of respiratory therapy at Orlando Health, says long COVID isn't going anywhere. In fact, he expects to see more cases.

"COPD is our bread and butter, asthma being a close second, and now my third most common diagnosis, post-COVID syndrome," he said. "This is something we're going to be seeing more and more because we're just in the early stages of patients still say, Well, maybe I'm just a slow healer. Let me give myself another couple of months. But I can tell you for a fact, that is becoming something that I'm seeing more and more."

Gaztambide said he’s seen a shift in ages among his patients from those dealing with pulmonary illnesses in their 50s, to people starting in their 20s as a result of long COVID.

Many of them were without any underlying medical conditions, he said.