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Help for COVID-19 long-hauler syndrome

May 04, 2021 | UCI Health
“We are pulling together a multidisciplinary team to develop treatment strategies that will vary for each person depending on their symptoms," says Dr. Long-Co Nguyen, who manages the Covid-19 recovery services program at UCI Health.

A year into the pandemic, researchers are struggling to understand why some people are still suffering adverse effects long after they’ve recovered from an acute episode of COVID-19.

Studies in the United States and Europe have identified patients whose symptoms linger months after the disease’s onset, long after their bodies show no sign of detectable virus.

Doctors call this phenomenon long COVID or post-acute COVID syndrome. The people who suffer from it are often referred to as “long-haulers” — and there are a lot of them.

The number of survivors who experience symptoms for a month or more range from 10% to 80%. A recent study from the University of Washington found that 30% of COVID-19 patients reported symptoms that persisted nine months after initial infection.

Staggering numbers

“Even at the lowest end — 10% of 30 million American cases — that’s three million long-haulers,” says Dr. Long-Co Nguyen, a primary care physician who is overseeing a new UCI Health COVID-19 recovery services program. “If 100 million people get COVID-19, that would be 10 million. That’s a staggering number and a pressing public health concern.”

Who develops long COVID is unpredictable. “They’re young and old, everyone from an 18-year-old restaurant worker to a heavily exposed healthcare worker,” Nguyen says of the two-dozen long-haulers she has treated.

Nor is long COVID limited to people who’ve recovered from severe cases of COVID-19.

“Even people who were not hospitalized and had mild illness can experience persistent or late symptoms,” says UCI Health internal medicine specialist Dr. Bavani Nadeswaran, who also has been treating a number of recovering COVID-19 patients.

Nadeswaran says multi-year studies are underway to identify how common these symptoms are, who is most likely to get them and whether these symptoms eventually resolve.

Symptoms run the gamut

Most commonly, people who have had COVID-19 experience one or more lingering symptoms, including:

  • Shortness of breath
  • Fatigue
  • Brain fog
  • Depression
  • Difficulty sleeping
  • Long-term loss of taste and/or and smell

Others, especially people who had severe cases, have experienced long-term lung and heart problems.

Prognosis unclear

COVID-19 is still so new that clinicians don’t know how these patients will respond to treatment or how long it may take them to return to normal.

“Judging by past coronaviruses such as SARS and MERS, it could be years,” Nguyen says.

Most survivors of the 2003 outbreak of SARS (Severe Acute Respiratory Syndrome) were able to return to work with two months, but about 17% of patients were unable to work a year later. Similarly, a study of patients stricken with MERS (Middle East Respiratory Syndrome) in 2008 found that nearly half continued to suffer from chronic fatigue a year after infection. Researchers don’t know why COVID-19 patients are experiencing prolonged illness, but Nadeswaran says possible causes may include:

  • Reduced or impaired immune system response
  • Relapse or reinfection of the virus
  • Inflammation from the immune system’s response to the virus
  • Damage to blood vessels from the original infection
  • Deconditioning, which is a change in physical function due to bed rest or inactivity
  • Post-traumatic stress

Managing symptoms

“We’re in uncharted territory with these patients,” Nguyen says. “We are pulling together a multidisciplinary team to develop treatment strategies that will vary for each person depending on their symptoms.”

For example, to treat fatigue, the COVID-19 Recovery Services team is adapting exercises for managing chronic fatigue syndrome. Special diets also may be recommended to reduce inflammation.

They are enlisting neurologists to help patients with brain fog and memory loss, and rehabilitation experts to help address shortness of breath and fatigue. Stress-busting disciplines such as tai chi, yoga and meditation may also be recommended.

The first step, Nguyen says, is to conduct a comprehensive evaluation of each patient to determine whether other conditions may be an underlying cause of lingering COVID-19 symptoms. Next, the physicians work with each patient to develop a treatment plan, which may include consultations with other specialists.

Nadeswaran notes that long COVID symptoms can fluctuate, making it important to track these patients carefully and be prepared to respond with appropriate care.

“People may also find it helpful to connect with a support network, particularly if long COVID is affecting their mental health, financial security or social well-being,” she says.

COVID-19 Recovery Services consultations are offered at UCI Health medical offices in Costa Mesa and Tustin. To schedule an appointment, call 949-386-5101.


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