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The National Institutes of Health is launching a billion-dollar study to try to understand why up to one-third of those who are infected with the COVID-19 virus suffer symptoms that persist months later.

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The study, announced Wednesday by Dr. Anthony Fauci, will track those suffering from the condition the NIH calls “Post-Acute Sequelae of SARS-CoV-2 infection,” or PASC. Those with PASC are commonly known as “long-haulers” because symptoms of the infection have persisted for weeks and months.

What is PASC, who gets it and what kinds of symptoms do they experience?

Here is what we know about it now.

What is PASC?

PASC is an acronym for post-acute sequelae of SARS-CoV-2 infection. People who have been infected with the COVID-19 virus and continue to exhibit symptoms for 28 days or longer are considered to have PASC.

What is a “long-hauler” when it comes to COVID-19?

A COVID-19 “long-hauler” is someone who has symptoms of the infection for at least 28 days or longer. “Long-hauler” is the common name for those with PASC.

Who gets PASC?

As far as researchers know now, there is no one type of person who is more likely to suffer from long-term COVID-19 symptoms and issues, though some doctors say they are seeing far more females showing such symptoms.

Ryan Hurt, an internist who leads post-COVID-19 syndrome research at the Mayo Clinic, told The Lily that 10% of the approximately 20,000 patients who have tested positive for the coronavirus at the clinic are considered long-haulers. Of that number, 60% to 80% are women, he said.

David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers, told the Atlantic that the majority of patients he has seen for PASC are female with an average age of 44, and were considered to be in good health and fit prior to contracting the virus.

According to research by the Mayo Clinic, older people and those with other serious medical conditions are the most likely to experience lingering COVID-19 symptoms. However, the research shows that young, otherwise healthy people have also reported feeling ill for weeks to months after infection.

In a study of 3,762 people who said they were suffering long-term COVID-19 symptoms, the majority were female, white and between the ages of 30 and 60.

The survey, conducted by Athena Akrami, with Patient-Led Research for COVID-19 and University College London, England, included adults with symptoms consistent with COVID-19, whether or not the infection had been confirmed by a viral or antibody test.

A Centers for Disease Control and Prevention report showed that those hospitalized with severe symptoms, regardless of gender, were more likely to suffer effects from the virus for a longer time. The CDC has reported that “Prolonged symptom duration and disability are common in adults hospitalized with severe coronavirus disease 2019 (COVID-19).”

How long do people with PASC experience symptoms from COVID-19 infections?

Little is known as far as the duration of symptoms for those with PASC, but many are defining a long-hauler as someone who is still having symptoms 28 days after they were diagnosed with COVID-19.

Research from the CDC showed that 35% of people with a COVID-19 infection experience symptoms for at least two or three weeks, so anyone continuing to have symptoms past that time is looked at as a long-hauler.

A United Kingdom survey found that 1 in 5 people suffered from symptoms lasting five weeks or longer. According to that study, 1 in 10 said their problems lasted 12 weeks or longer.

A study out of Wuhan, China, where the virus is believed to have first spread, showed that six months after the onset of illness, more than 75% of people hospitalized with COVID-19 between January and May 2020 continued to report at least one symptom.

The study, published in The Lancet, showed that fatigue, muscle weakness, sleep difficulties, anxiety, and depression were the most common symptoms seen in those who were still showing symptoms at least two weeks after contracting the virus.

In those who were most ill, significant persistent lung abnormalities were a common symptom.

What are the symptoms?

The most commonly reported long-term symptoms include:

  • Fatigue
  • Shortness of breath
  • Cough
  • Joint pain
  • Chest pain

Other reported long-term symptoms include:

  • Difficulty with thinking and concentration (sometimes referred to as “brain fog”)
  • Depression
  • Muscle pain
  • Headache
  • Intermittent fever
  • Fast-beating or pounding heart (also known as heart palpitations)

While there are more serious symptoms and complications reported in long-haulers, they appear to be rare.

The most serious complications seen so far include:

  • Cardiovascular: inflammation of the heart muscle
  • Respiratory: lung function abnormalities
  • Renal: acute kidney injury
  • Dermatologic: rash, hair loss
  • Neurological: smell and taste problems, sleep issues, difficulty with concentration, memory problems
  • Psychiatric: depression, anxiety, changes in mood

How damaging is long-haul COVID-19?

According to Dr. Gregory Poland, a COVID-19 expert at the Mayo Clinic, we don’t yet know the full scope of the damage the virus can do to a person’s body, but what we do know now is disturbing.

“People who are thinking, especially young people, ‘(It’s a) mild disease, you know. I might not even have any symptoms, and I’m over it.’ Whoa. The data is suggesting otherwise,” Poland said. “There’s evidence of myocardial damage, cardiomyopathy, arrhythmias, decreased ejection fractions, pulmonary scarring and strokes,” he added.

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