Understanding COVID-19 ‘long-haulers’

At the beginning of the COVID-19 pandemic, concerns were primarily focused on how quickly the coronavirus was spreading and the severity of disease it might cause. More than a year later, we now know far more about COVID-19. Safe and effective vaccines are now available, and case numbers - along with related hospitalizations and deaths - have dropped dramatically. But one aspect is still troubling experts: the disease'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. study showed that 10% of patients who tested positive for the coronavirus remained unwell beyond 3 weeks. And a study from the University of Washington found that approximately 30% of participants reported persistent, debilitating symptoms up to 9 months after infection.

Outside the norm: long-term symptoms in young, previously healthy people
Early on, the Centers for Disease Control and Prevention (CDC) reported that older adults and people with underlying medical conditions are at greater risk for more severe COVID-19 illness. They are also more likely to experience long-term complications or disability once their infection has resolved.

"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 doctor affiliated with Sharp Coronado Hospital. "This is especially true for older patients, and patients who require ICU stays and mechanical ventilation."

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.

Body Politic, an online long-hauler support group, found in its survey of mostly previously healthy, young women who had non-severe COVID-19 that 91% with prolonged symptoms 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.

Noted symptoms of what is referred to as post-COVID-19 or long COVID-19 illness include:

• Fatigue

• Fever and chills

• Difficulty breathing and chest discomfort

• Elevated heart rate or racing heart

• Burning feet or hands

• Loss of smell or taste

• Muscle and joint aches or pain

• Chronic cough

• Headache

• Dizziness

• Confusion, difficulty concentrating or brain fog

• Difficulty sleeping

• 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.

In fact, among participants in the patient-led Body Politic investigation, 67% reported a major decline in physical activity, saying they were moderately to very physically active before having COVID-19, but now report being mostly sedentary.

What's more, it has been noted that long-term symptoms are more common in patients with preexisting psychiatric diagnoses, including anxiety and depression. Even those who never before experienced mental health concerns are developing neurological or psychiatric conditions after having COVID-19. A study published in The Lancet Psychiatry medical journal found that 34% of COVID-19 patients were diagnosed with insomnia, substance use disorder, and anxiety disorders in the 6 months after infection.

"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."

Removing challenges in care, finding connections to other conditions
Unfortunately, according to Dr. Butera and Merchant, because there is still an incomplete understanding of the full spectrum of post-COVID-19 symptoms and how long they last, several patients are finding it difficult to receive appropriate care. While some medical providers are unfamiliar with long COVID-19 and unsure how to treat it, others are slow to recognize the validity of patients' claims.

"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."

According to Dr. Butera, while there is no clear definition of post-COVID-19 - nor are there exact methods to measure, diagnose or treat it - experts are learning that the symptoms experienced by COVID-19 long-haulers overlap with other known conditions.

Some doctors have noted similarities to 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; postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder; and autoimmune disorders. Others have suggested that the virus might leave particles behind in the body, which continuously cause inflammation, or "hide" in the body's tissue and reemerge when the immune response to the original infection weakens.

Hope for finding relief
While some long-haulers report that their symptoms were relieved by receiving a COVID-19 vaccine, not all are finding relief. A study found that just 30% to 40% of long-haulers reported improvements in their condition after vaccination. However, the researchers believe this response to the vaccines might hold a key to learning more about long COVID-19, and they are encouraged by efforts to increase funding for further investigations.

This includes a new $1.15 billion initiative introduced by the National Institutes of Health (NIH), which seeks to identify the causes of long COVID-19 and determine the optimal means of prevention and treatment. The initiative will support a variety of researchers who will collaborate and coordinate across studies, encompassing neurology, neuropsychiatry, cardiology, pulmonary medicine, physical and occupational rehabilitation, and a variety of other disciplines.

Dr. Butera recommends that people who are still experiencing symptoms after recovering from COVID-19 talk with their doctors. "We are taking steps to grasp the full picture of the COVID-19 long-haulers phenomena, and multiple investigations are in process to help us understand its prevalence and the appropriate means with which to treat it, giving us hope that relief is possible."

Learn more about the COVID long-hauler rehabilitation program at Sharp HealthCare.