Unpacking the Questions Surrounding COVID-19 “Long-haulers”

By June 4, 2021June 11th, 2021Expert Advice Featured Well-being
A woman smells essential oil to retrain her sense of smell

As the COVID-19 pandemic has unfolded, patients seem to fall into three main categories: those who are asymptomatic, those with mild or moderate symptoms, and those who suffer serious symptoms resulting in hospitalization and/or death.

But what about another group of people, including those who are still suffering from the consequences of a COVID-19 infection weeks to months after the acute infection? They may have had a mild or moderate case of COVID-19, or even no initial symptoms at all, but are experiencing persistent, troubling, and often debilitating symptoms months after contracting the infection. Luckily, this fourth group of people, known as the COVID-19 “long-haulers” have started to gain more attention, and the medical community now has more information to help.

What is a COVID-19 “Long-hauler”?

The National Institutes of Health officially refer to long-term COVID-19 symptoms as PASC — post-acute sequelae of SARS-CoV-2. A COVID-19 “long-hauler” is a person who experiences these long-term symptoms months after a COVID-19 diagnosis. Although numbers vary, some studies show that up to one-third of COVID-19 patients may suffer from long-term symptoms. These symptoms are sometimes so debilitating that they prevent the person from working or engaging in other everyday activities such as basic exercise.

Listening and Acknowledging

Treatment for long-term COVID-19 isn’t straightforward since the condition is relatively new and most long-haulers test negative for active, ongoing infection with COVID-19. In addition, there isn’t a way to test for lingering COVID-19 symptoms.

The road to recovery for many long-haulers can be long, complicated, and riddled with uncertainties. There are no easy answers for tough questions like how long symptoms will last or if there will be permanent damage.

Many long-haulers are frustrated that they can’t get answers for their oftentimes debilitating symptoms. Luckily, that’s changing. The medical community is discovering new ways to treat these symptoms every day.

Determining Who is at Risk of Becoming a Long-hauler

There are various theories about why some suffer from long-term COVID-19 symptoms. Although long-haulers test negative for COVID-19, there is a theory that the virus may actually still be lingering in their bodies at a small level that’s not detected by tests. Another theory is that even though the virus is no longer in their body, their immune system continues to act as though the virus is still present.

When looking at who is afflicted by long-term COVID-19 symptoms, there doesn’t seem to be any particular pattern. Long-haulers include both the young and old, male and female, otherwise healthy people, as well as those with preexisting conditions. What’s more is that many long-haulers had either a very mild case of COVID-19 or were asymptomatic so may have never even received an official COVID-19 diagnosis. This makes it even more difficult to predict or even treat long-haulers.

Some research shows that there may be a slight trend towards women, older individuals, those who are obese, or those with chronic conditions, but again, doctors are seeing patients from every demographic and more studies need to be done.

Long-hauler Symptoms

Another difficult part of helping long-haulers is that symptoms vary widely from person to person. The list of long-hauler symptoms is lengthy and may include:

  • Coughing
  • Ongoing, sometimes debilitating, fatigue (that often prevents the person from working)
  • Body aches
  • Depression and anxiety
  • Chest pain or other heart problems
  • Joint pain
  • Dizziness
  • Fever
  • Shortness of breath
  • Difficulty sleeping
  • Headaches/migraines
  • Loss of taste and smell
  • Brain fog and other cognitive problems

Although long-haulers often experience a variety of lingering COVID-19 symptoms, two symptoms that are widely reported are the loss of taste and smell and brain fog.

Brain fog

Brain fog is one of the most common symptoms of long-haulers and can often include confusion, short-term memory loss, and difficulty concentrating. Doctors are starting to understand more about brain fog and how best to treat it. Treatments now include improving sleep habits, limiting screen time, mindful exercise such as tai chi and yoga, and building cognitive function over time through mental and memory exercises.

Loss of taste and smell

The loss of taste and smell has become a common marker of a COVID-19 infection. Not every COVID-19 patient experiences the loss of taste and smell, but for those that do, it can be distressing.

Some long-haulers didn’t originally lose their sense of taste and smell with their initial COVID-19 infection, but develop it after — a frustrating long-term symptom that can have both physical and mental effects.

One treatment? Smell training, which is defined as a sort of physical therapy for your nose. Long-haulers can also sign up to participate in ongoing research studies that track symptoms in an effort to learn more about loss of taste and smell and how best to cure it.

Resources

For those who suffer from any of the above symptoms and suspect they may have long-term COVID-19, the Centers for Disease Control (CDC) recommends you see your primary care provider. Your doctor can connect you to specialists who have experience with long-term COVID-19 symptoms. In addition, other resources include:

Local resources:

Support groups:

Doctors and therapists work with patients over time to address symptoms. Recovery is gradual and treatments may include a combination of breathing exercises, physical therapy, cognitive and memory exercises, medications, and other treatments.

In addition to the above resources, the CDC is in the process of developing treatment guidelines for COVID-19 long-haulers.

The Vaccine Question

Now that more and more people are getting the COVID-19 vaccine, many long-haulers wonder whether or not they should get the vaccine. The short answer is, yes! In fact, some long-haul COVID-19 patients report vaccines are easing their lingering symptoms. 

It’s too early to tell if the COVID-19 vaccine can alleviate long-haulers’ symptoms for good, but there are some promising results that need further testing. For those who have seen relief however, the vaccine has been a ray of hope.

Using All the Tools in Our Arsenal

The bottom line is that in addition to mask-wearing and social distancing, the COVID-19 vaccine is just one more tool we have to help prevent COVID-19 infections, reduce COVID-19 reinfections, and help end the pandemic through herd immunity.

As we uncover more about COVID-19, hopefully we’ll continue to learn more about how to help those who suffer from long-term COVID-19 symptoms.

Dr. Dolores Roman

About Dr. Dolores Roman

Dr. Dolores Roman joined Independence Blue Cross in 2019. As a 20-year veteran of emergency rooms in and around the Philadelphia area, Dr. Roman has dealt with every kind of emergency. Now as a medical director at Independence, Dr. Roman is involved in utilization management, case management, and quality improvement. What Dr. Roman loves most about this job is the opportunity to collaborate with colleagues in order to enhance the health and well-being of those served by Independence Blue Cross.

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