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COVID Long-Haulers Battle Ongoing Illness, Seek Medical Answers

American Heart Association

Why It Matters:

  • After the onset of COVID-19, a lingering illness known as long COVID-19 can sideline patients with serious symptoms.
  • COVID long-haulers may find it difficult to press on with work and normal activities.
  • The cost of treating long COVID-19 and the financial impact on lost productivity may be enormous.

After surviving an initial battle with COVID-19, life isn’t necessarily smooth sailing. Sometimes a condition known as long COVID-19, or long-haul COVID-19, causes health problems for weeks or months.

Long-haul symptoms may appear even if someone originally wasn’t sick enough to be hospitalized with COVID or if they were asymptomatic, according to the Centers for Disease Control and Prevention. Post-COVID conditions can include a range of new, returning, or ongoing medical problems.1

“It’s 100% a real thing,” said James de Lemos, MD, an internal medicine professor at UT Southwestern Medical Center’s cardiology division. He co-chairs the American Heart Association COVID-19 CVD Registry, consisting of hundreds of hospitals and thousands of patients nationwide that help scientists learn more about the disease.

“Much more research needs to be done to better understand long COVID. It’s challenging to study a disease as it’s still emerging,” de Lemos noted. “Long-haulers who initially had mild COVID cases are typically young women,” he said, “though other patients are also affected.”


Prominent symptoms

Among the potential post-COVID-19 symptoms are difficulty breathing, a cough, chest or stomach pain, muscle pain, fatigue, headaches, change in smell or taste and difficulty thinking, or “brain fog.” Some problems may be cardiovascular related, such as shortness of breath, dizziness, heart palpitations, or an unusually fast heartbeat.2

A small study from Italy published last year in Journal of the American Medical Association showed that 87% of patients who were discharged from the hospital after COVID-19 continued to have at least one symptom two months later. A CDC-published study indicated 35% of people who had the coronavirus and exhibited symptoms, but were not hospitalized, had not returned to their usual health after two or three weeks.3

Over time, symptoms tend to subside. “It’s slow, but most people gradually get better,” de Lemos said, adding that avoiding long COVID-19 is one more reason to get a vaccine to reduce your chances of it in the first place.

Anecdotally, some long-hauler patients have reported experiencing relief from symptoms after receiving the COVID-19 vaccine. Researchers are working to generate hard scientific data about vaccinated long-haulers.4

Reaching out for support

As the pandemic took hold, patients drew attention to long COVID-19. They were “basically crying out and suffering from a myriad of symptoms impacting quality of life,” de Lemos said.

Often, they shared their experiences on social media. Information about the long-term symptoms spread from patients through assorted media and to formal clinical and policy channels over several months, demonstrating how patient knowledge needs to be incorporated into how COVID-19 is researched and treated, one study stated.5

Alexis Crumbley was one of the long-haulers who spoke out. The 45-year-old health policy analyst from Austin, Texas, contracted the virus overseas in March 2020. After the initial illness, she had persistent chest tightness, pain when breathing, fever over 101 degrees, and a continuing cough. She had tachycardia, which is a fast heartbeat, a pounding chest, and irregular heartbeats.

“In the beginning, no doctors could understand why I was still experiencing symptoms since I really wasn’t extremely ill at the onset,” she explained. Someone sent her a magazine article about COVID-19 long-haulers, and she found online groups of others with the condition. She took comfort in realizing she wasn’t alone and wasn’t imagining her symptoms. She discovered treatments other long-haulers were exploring.

At first, Crumbley didn’t say much about her illness publicly. Then one day after going to a department store and noticing people who weren’t wearing face masks or keeping their distance from others, she felt the need to “vent” with a Facebook post about her condition and the seriousness of the virus. She eventually made the post public, and it was shared around the world, up to 250,000 times at last count. She began receiving direct messages and hundreds of friend requests each day from others seeking information and online connections.

Today, Crumbley still suffers from some of her old symptoms and has some new ones, including autoimmune issues. She has lung tightness and asthma and controls those with breathing treatments through a nebulizer. She takes medication for pericarditis, an inflammation of the sac-like structure around the heart, and for general inflammation. She recently finished intensive therapy to improve heart and lung fitness, which helped lower her heart rate and boost her energy level.

Well-wishers keep checking in on Crumbley. She is doing better and encourages others to find online support groups. Sometimes she hears from people who say her story encouraged them to get the COVID-19 vaccine.

Questions to answer

Long COVID-19 clinics are springing up across the country to meet the needs of patients and to study the illness.6 Meanwhile, the National Institutes of Health is embarking on a $1.15 billion initiative to study long COVID-19, formally known as post-acute sequelae of SARS-CoV-2 infection (PASC).7

What do scientists need to learn about long COVID-19? “Everything,” de Lemos said. “It’s just like the Wild West.”

“Among the unknowns are how to prevent and best treat long COVID-19, who is most vulnerable, and how many people are suffering from it. Even if a small percentage of patients experience long-haul symptoms, that’s still a large number, given the millions of people who contracted the virus,” de Lemos pointed out.

The cost of the long-term condition — for individual patients and the overall health care system — also remains a question mark. Among the expenses are outpatient tests, doctor visits, and potentially lost workdays

“It’s going to be enormous based on lost productivity of these vibrant young people,” said de Lemos, referring to the age group that seems to most often suffer from long COVID-19. The estimated U.S. cumulative cost of lost output and reduced health from the COVID-19 pandemic is more than $16 trillion.8

Then there are the costs that can’t be counted in dollars, like the parents of young children trying to recoup their health and energy to tend to family responsibilities. Crumbley, a wife and mother, believes it’s critical to search for the right care. That can mean learning what worked for other patients and finding a doctor who is willing to understand.

“This is patient-led care,” she noted, “and eventually the medical world will catch up.”


Things to Consider:

  • Getting vaccinated helps prevent COVID-19 and a potential ongoing battle with long COVID-19.
  • Seeking out online support groups for COVID long-haulers can help those trying to treat and cope with the illness.
  • Clinics to assist long COVID-19 patients are springing up. Meanwhile, medical researchers are working to learn more about the illness.

1 ”Post COVID Conditions,” Centers for Disease Control and Prevention, July 2021

2 ”Post COVID Conditions,” Centers for Disease Control and Prevention, July 2021

3 ”For Many People, Surviving COVID-19 Doesn't Mean Getting Better,” American Heart Association, December 2020

4 “Why Vaccines May Be Helping Some With Long COVID,” Yale Medicine, April 2021

5 “How and Why Patients Made Long Covid,” Social Science and Medicine, January 2021

6 “New Long-Haul COVID Clinics Treat Mysterious and Ongoing Symptoms,” Scientific American, June 2021

7 "NIH Launches New Initiative to Study," National Institutes of Health, February 2021

8 "The COVID-19 Pandemic and the $16 Trillion Virus," JAMA, October 2020

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