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Experts are learning about long-haul COVID-19. Renata A Photography/Getty Images
  • The National Institutes of Health sponsored a meeting this month to discuss the long-term symptoms of the coronavirus.
  • Experts shed light on the millions of people around the world who have been affected by lingering symptoms from COVID-19.
  • Some patients have been exhibiting symptoms for more than 4 weeks, or even months, after “recovering” from COVID-19.

For a growing number of COVID-19 patients, getting a negative test result days or weeks after the initial infection doesn’t signal an end to the effects of the disease.

These patients, known as long-haul COVID-19 patients, may test negative for the virus but continue to experience symptoms for many weeks, or even months, after the virus is gone.

On Dec. 3 and 4, the National Institutes of Health sponsored a meeting to discuss the long-term symptoms of COVID-19. This shed light on the millions of people around the world who’ve been affected by lingering symptoms from the disease.

In fact, when it comes to long-haul COVID-19, we may be facing another public health crisis, experts said.

Some patients who had COVID-19 tend to recover within 10 days to 2 weeks (up to 4 weeks for more serious cases).

But there are some people who’ve been exhibiting symptoms for more than 4 weeks, or even months, after “recovering” from the virus.

This group of people has been overlooked as the medical community races to try to keep hospitalizations of active cases low and the maximum number of those who have the disease alive.

But questions remain: What are the long-term health effects associated with COVID-19? What options are available for long-haul patients? And just how widespread is this condition?

Long-haul COVID-19 refers to the long-term symptoms people may experience after recovering from the disease.

These symptoms persist weeks or even months after symptoms first appear. According to the Centers for Disease Control and Prevention (CDC), symptoms include:

  • fatigue
  • shortness of breath
  • cough
  • joint pain
  • chest pain

Other reported long-term symptoms include:

  • difficulty with thinking and concentration (aka “brain fog”)
  • depression
  • muscle pain
  • headache
  • intermittent fever
  • fast beating or pounding heart

Then there are more serious long-term complications, which appear to be less common, but have been reported. These include:

  • inflammation of the heart muscle
  • lung function abnormalities
  • acute kidney injury
  • rash, hair loss
  • smell and taste problems
  • memory problems
  • anxiety
  • changes in mood

Treating long-haul COVID-19 has been a challenge for medical professionals because they’re still learning about the condition.

In fact, there’s no clinical name for the condition, nor have there been reimbursement codes created for insurance companies. It’s not officially classified as a syndrome, either.

As researchers are still learning about COVID-19 itself, they have that much more to learn about long-haul COVID-19.

Long-haul COVID-19 manifests itself in such a wide variety of ways that there’s no uniform approach to treatment.

“The first thing we do is make sure there aren’t lingering areas of pathology [or acute infection],” said Dr. Rany Condos, clinical professor of pulmonary medicine and critical care at NYU Langone. “Sometimes patients might have inflammation in their airways, which we can treat with an inhaler. Other times they have chest discomfort, which we treat with anti-inflammatory drugs. We make sure there are specific processes we can target and treat.”

Doctors studying long-haul care then help patients understand their symptoms and help them improve. They may work with the rehabilitation department to help recommend an exercise program or give guidance on how to overcome fatigue.

“A lot has to do with support in terms of making sure we’ve ruled out causes of symptoms,” Condos said. “Many times that includes psychological support to make sure they feel they are supported in their illness.”

“What’s trouble is not everyone experiences the same effects of the virus. Everyone has a different type. That characterizes COVID-19 in general,” said Dr. Robert Glatter, emergency physician at Lenox Hill Hospital.

“We do find that patients who have lots of symptoms early on, about four to five symptoms, are the people that can go on to have long-haul COVID,” he said. “The presence of many symptoms is often a predictor that there will be long-haul COVID.”

In fact, Glatter treated a fellow physician for long-haul COVID-19: Dr. Scott Krakower, attending psychiatrist, Child and Adolescent Psychiatry at Zucker Hillside Hospital in New York.

Krakower was diagnosed in April and stayed very sick until June with an acute infection. He needed multiple rounds of antibiotics, intravenous steroids, oral steroids, among other medications for almost 2 1/2 months.

But even after the virus tests came back negative, he was still feeling seriously ill through July.

“I am still on inhaler steroids,” he said. “I made a big recovery, but I still have follow-ups with cardiologists and pulmonologists. I still get fatigued and cold-like symptoms.”

Eight months have passed since his diagnosis.

Most long-haul COVID-19 patients, like Krakower, are an underserved community.

That is because they fall in the crux of care where providers are saving the lives of patients on ventilators, having to keep people alive, and then treating their other patients.

Long-haulers aren’t in a critically life-threatening position, but the long-term symptoms can be excruciating to live with.

“Our country doesn’t have support in place,” Krakower said. “A lot of this is figuring it out and is based on your provider and how much they’ve read and kept up with the literature.”

“Many times in the post-COVID clinic, patients will tell me that their doctor has told them everything is OK, but that they still cannot get out of bed,” Condos said. “The difficulty in defining this group is because we weren’t really aware that these were persistent symptoms related to COVID-19.”

“We need to recognize this syndrome and develop a formal name,” Glatter added. “We need to develop centers of excellence and multidisciplinary teams to care for patients, as so many are unable to work, exercise, or even resume normal lives.”

And, medical professionals believe that we haven’t begun to see the deluge of long-haul COVID-19 patients.

“We’re seeing the beginning wave. But there are possibly hundreds of thousands of people who need access to care in our medical system,” Glatter said.

We’re potentially on the brink of another public health crisis with respect to long-haul COVID-19. There are hundreds of thousands of people that will be affected by this still little-known condition.

“As we think about how many millions are affected with COVID, you can imagine over the next two years, if not longer, we will continue to see a large number of patients with long-haul symptoms,” said Condos, who emphasized that this problem won’t end when the pandemic does.

“It is a public health emergency,” she said.