What’s It Like to Be a Long-Hauler? An Epidemiologist Explains

In early June, PatientWorthy wrote about a group of patients called “long haulers.” These people, some healthy and some with pre-existing conditions, experienced extended COVID-19 symptoms, sometimes for months after the fact. When the viral pandemic began, many people believed that after contracting the virus, symptoms would pass within 2-3 weeks. Now, with 23.7 million cases globally (5.75 million in America) and an associated 814,000 deaths, it is clear that we may not know as much about COVID-19 as we thought. But what does it mean to be a long-hauler? Epidemiologist Margot Gage Witvliet explains.

Margot’s Long-Hauler Story

At the beginning of 2020, epidemiologist Margot Gage Witvliet traveled to Europe. She returned home in March feeling healthy and happy. As a non-smoker with no preexisting conditions, Margot had no idea what was about to happen next.

Within 10 days of her return, she began feeling fatigued, weak, and extremely sick. She describes it as:

waking up one morning feeling suffocated by an unseen force.

When she began struggling to breathe, she visited the hospital. But her COVID-19 test (not yet FDA-approved) came back negative. However, she used insights from her work to determine that this was most likely a false negative. It seems as though this might be true. She rested and by the end of March, things seemed to be looking up.

Then everything changed when Margot had a sudden seizure. After admittance into the emergency room, a doctor confirmed what Margot already knew: she was positive for COVID-19. However, said the doctor, she was lucky. She had no lasting organ damage. To this day, we are still unclear how lung, heart, and organ scarring will affect recovered patients in the future.

But why was she still sick? Why wasn’t she getting better? A thorough online search led her to the answers, the people just like her. The long-haulers.

What is a Long-Hauler?

Generally, a long-hauler is someone who is experiencing moderate to severe COVID-19 symptoms, but is not sick enough to be hospitalized. Research suggests COVID-19 may be able to cross the blood brain barrier. As a result, some long-haulers experience neurological difficulties. Others experience sustained fatigue, similar to chronic fatigue syndrome (ME/CFS).

However, dealing with doctors is a huge frustration for many in this group. Check on any COVID-19 or long-hauler support group, and you’ll see comments from patients about how doctors brush off their complaints or write them off as psychological.

What Causes Sustained Symptoms?

Unfortunately, the cause of sustained COVID-19 symptoms is unclear. According to one study, published in medRxiv, blood type may play a role. Some believe that those with type A blood are more vulnerable to COVID-19 infection, while type O blood provides some protection. Another study hypothesizes that TLR7 immune cells, located on the X chromosome, are defective in some patients. As a result, the body doesn’t easily detect the infection. Because women have two X chromosomes, and men only have one, men are more likely to experience severe COVID-19 cases.

Additionally, shares The New York Timesmany recovered patients test negative for antibodies following recovery. As a result, patients may not be protected from recurrent symptoms or infections.

Long-Hauler Symptoms

In July, the CDC noted that even young people can experience long-term symptoms relating to COVID-19. Researchers from Indiana University also published a list of potential symptoms. There are over 100 symptoms on the list, including:

  • Fatigue
  • Anxiety
  • Difficulty breathing
  • Hair loss
  • Joint pain
  • Weight loss
  • Night sweats
  • Extremely fast heart rate
  • Dry or peeling skin

Still Struggling

Nearly 16 weeks later, Margot’s symptoms remain: a racing heart, confusion, mental fogginess, headaches low energy, tinnitus, chest pain, gastrointestinal distress.

But Margot isn’t alone. Instead, she is considered a long-hauler. As the months have gone by, innumerable patients stepped forward to say the same: their symptoms simply haven’t gone away. But more frighteningly, nobody knows how long these symptoms will last – or what the resulting damage will be. Will this cause employment problems? Financial struggles? Early mortality? Unfortunately, the answer isn’t clear. To move forward, and help the long-haulers, more research needs to be done.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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