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Sharp Health News

Understanding COVID-19 ‘long haulers’

Feb. 3, 2021

Lady sad and depressed in bed feeling worried about COVID-19 pandemic
At the onset of the coronavirus pandemic, some primary concerns were on the severity of disease it might cause, the possibility that asymptomatic people were unknowingly spreading the virus, and the necessary precautions to slow its spread.

While experts now know far more about COVID-19, its means of transmission and how to prevent infection, one aspect that is currently troubling is the virus’s ability to affect some people on a long-term basis.

Commonly referred to as “long haulers,” a significant group of people recovering from COVID-19 may experience prolonged symptoms for weeks to months after their initial illness. A U.K. COVID-19 study suggested that 10% of patients who tested positive for the coronavirus remained unwell beyond 3 weeks, with a smaller percentage of people having symptoms lasting for months.

Common COVID-19 symptoms and consequences
COVID-19 causes a variety of symptoms, typically lasting an average of 7 to 14 days. The 5 most common symptoms include:
  • Fever
  • Cough
  • Fatigue
  • Loss of taste and smell
  • Difficulty breathing
The Centers for Disease Control and Prevention (CDC) reports older adults and people with underlying medical conditions are at risk for more severe illness from COVID-19. They are also more likely to require hospitalization and experience lengthy complications than those who are younger and healthy.

“We understood that prolonged symptoms and disabilities are common in adults hospitalized with severe COVID-19 infection,” says Dr. Michael Butera, a board-certified infectious disease specialist affiliated with Sharp Coronado Hospital. “This is especially true for older patients, and patients who require ICU stays and mechanical ventilation.”

Outside the norm: long-term symptoms in young, previously healthy people
However, according to Dr. Butera, patients of all ages are reporting that they are experiencing symptoms long after they were thought to have recovered from mild to moderate COVID-19 illness that did not require hospitalization.

Noted symptoms of what is referred to as “post-COVID-19” illness (extending beyond 21 days after infection) and “long-COVID-19” illness (extending beyond 12 weeks) include:
  • Fatigue
  • Fever and chills
  • Difficulty breathing and chest discomfort
  • Elevated heart rate
  • Loss of smell or taste
  • Dry eyes
  • Sinus congestion
  • Sore throat
  • Cough
  • Tinnitus (ringing in ears)
  • Muscle and joint aches or pain
  • Headache
  • Dizziness
  • Confusion, difficulty concentrating or brain fog
  • Difficulty sleeping
  • Depression and anxiety
  • Skin rash
  • Gastrointestinal symptoms, such as pain, nausea, diarrhea and lack of appetite
“Perhaps most troubling, a worse quality of life was reported by 44% of these patients,” says Jessica Merchant, DNP, a nurse practitioner who works with Dr. Butera.

Finding commonalities in other illnesses
According to Dr. Butera, experts are learning that the symptoms experienced by COVID-19 long haulers overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterized by profound fatigue, sleep abnormalities, pain and other symptoms that are made worse by exertion. There is increasing evidence that, like ME/CFS, extended stress on the nervous system can affect multiple organs and may explain some of the COVID-19 long haulers’ symptoms.

What’s more, it has been noted that long-term symptoms are more common in patients with preexisting psychiatric diagnoses, including anxiety and depression. “It’s well-known that any chronic or debilitating condition can also cause psychiatric manifestations,” Dr. Butera says. “There is a dynamic interplay among these conditions.”

The need for post-COVID research grows
Unfortunately, according to Dr. Butera and Merchant, there is still an incomplete understanding of the full spectrum of COVID-19 symptoms and how long they last in people who experienced less severe initial COVID-19 illness. What’s more, among those reporting long-term symptoms, some were never tested for COVID-19 — primarily due to the lack of access to testing in the early months of the pandemic — though assume they were infected, but are not likely to be included in research.

Others are finding it difficult to receive appropriate care, even with a confirmed COVID-19 diagnosis. While some medical providers are unfamiliar with post-COVID illness and unsure how to treat it, others are slow to recognize the validity of patients’ claims.

“This adds to uncertainty in characterizing the full picture of the COVID-19 long haulers phenomena,” Dr. Butera says. “However, there are multiple investigations in progress to further assess the magnitude of post-COVID-19 and long-COVID prevalence and manifestations.”

These investigations include outreach programs from COVID-19 clinics around the country that study and provide treatment for the increasing number of patients experiencing long-term COVID-19 complications. They encompass neurology, neuropsychiatry, cardiology, pulmonary, physical and occupational rehabilitation, and a variety of other disciplines.

Additionally, patient-led investigations are being performed by advocacy groups, such as Body Politic, an online COVID-19 support group. Their initial survey of long hauler participants was comprised of mostly previously healthy, young women who had non-severe COVID-19 and had not been hospitalized.

Among participants, 91% with prolonged COVID-19 symptoms said they hadn’t fully recovered at 40 days from the onset of their symptoms, which tended to increase and decrease in number and intensity over time. And the majority reported a major decline in physical activity due to the virus, with 67% saying they were moderately to very physically active before having COVID-19, but now report being mostly sedentary.

“It has become clear that the symptoms perceived by the majority of these patients are real,” Dr. Butera says. “It is vital that medical providers recognize that the long-term symptoms are not simply ‘in their heads’ and should not be dismissed.”

Get COVID-19 information and access to resources from Sharp HealthCare.

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