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Long-term recovery from COVID-19, also known as “long-distance” COVID syndrome, continues to challenge clinicians and patients alike, with evidence on how best to manage the most common symptoms based primarily on cross-sectional studies and anecdotal reports.
Until a clearer picture emerges from larger, prospective, multicenter studies, experts shared what is known and the evidence that remains elusive at a Feb. 12 press conference sponsored by the Infectious Diseases Society of America.
To be considered post-COVID-19 syndrome, symptoms must persist for at least 4 weeks after acute SARS-CoV-2 infection. However, many patients experience symptoms that last 2 to 6 months or longer.
Fatigue appears to be the most common, followed by breathlessness and other pulmonary complications, Allison Navis, MD, assistant professor in the Division of Neuroinfectious Diseases at the Icahn School of Medicine at Mount Sinai in New York City, said during the briefing.
Neurological symptoms, particularly “brain fog” and numbness or tingling throughout the body, as well as mental health problems, including post-traumatic stress disorder (PTSD), have also been reported anecdotally, he said.
Symptoms of post-COVID-19 syndrome can be similar to those experienced during an acute infection.
Symptomatic infection precedes most cases
People who have experienced asymptomatic SARS-CoV-2 infection rarely seem to progress to persistent post-COVID syndrome, said Kathleen Bell, MD, Kimberly Clark Distinguished Chair in Mobility Research at UT Southwestern Medical Center in Dallas.
However, “we are certainly seeing people who were not hospitalized, who were seriously ill and treated at home” with post-COVID syndrome, said Bell, who is also a professor and chair of the Department of Physical Medicine and Rehabilitation at UT Southwestern.
Navis agreed that in her experience, most people with long-term effects controlled the acute infection at home or were hospitalized. “Maybe there were one or two people who probably had an asymptomatic infection and came in with a mild, prolonged COVID syndrome,” he said.
Hazards related to hospitalization
For some patients, being hospitalized for COVID-19 itself can lead to long-term recovery problems. For example, hospitalized patients who spend a high proportion of time in a prone position may be more likely to experience peripheral neuropathy, Bell said. Associated arm and leg weakness can be particularly important in people with diabetes.
Also, a prolonged hospital stay can trigger adverse mental health outcomes. “We have people in the hospital for 3 months and in a large percentage we are seeing mental health symptoms including PTSD, anxiety and depression,” Bell said. These adverse effects are not unique to COVID-19, but are also reported in other people who spend weeks or months in intensive care, he added.
Some people with mild mental health issues may have been compensating long before their COVID-19 experience, but the stress of acute infection and hospitalization exacerbates their condition, Bell explained.
A local outbreak can also increase the risk of mental health problems. The increase in cases in March and April 2020, for example, “was a very scary time here in New York City,” Navis said.
“Some people were isolated in their apartments, listening to the sounds of ambulances and sirens, and they were concerned for their own health and survival,” he said, adding that it also triggered anxiety, depression or post-traumatic stress disorder in some.
Consensus and guidelines in the works
The World Health Organization issued an updated treatment guide for COVID-19, including for people with persistent symptoms, on January 26.
The Centers for Disease Control and Prevention is working on guidelines for the diagnosis and treatment of people with post-COVID syndrome, “which is very exciting,” Bell said. The recommendations are expected to emerge from an event about 3-4 weeks ago in which the agency brought together experts to share their models of care.
The National Institutes of Health is also interested in developing protocols, Navis said.
Many specialized teams and clinics have emerged to address the growing population of COVID-19 “long-haul carriers.”
Interestingly, although many centers initially wrote their own protocols to treat this patient population, “we’re starting to look alike,” Bell said.
The COVID-19 recovery clinics at the Bell and Navis institutions focus on multidisciplinary collaboration, including general healthcare and specialists such as pulmonologists, cardiologists, and psychiatrists, as well as rehabilitation specialists, to address specific symptoms.
It is unknown what proportion of people with COVID-19 will progress to post-COVID syndrome. “The expectation would be that most people are likely to improve in weeks or months, and about 10% to 15% will have problems longer,” Bell said. Larger studies should help clarify the numbers.
Although it is generally accepted that more men than women develop COVID-19 and die, it remains to be seen whether the risk of long-term effects differs between men and women. Navis reported a fairly even distribution of cases by gender in her experience.
How vaccination could prevent or mitigate post-COVID syndrome also remains an open question. Vaccines “are so new it would be a crystal ball question,” Bell said.
Bell predicted that it will take about 6 months for answers to these and other unknowns about post-COVID syndrome to emerge from larger prospective studies.
Damian McNamara is a Miami-based staff journalist. Covers a wide range of medical specialties, including infectious diseases, gastroenterology, and intensive care. Follow Damian on Twitter: @MedReporter.
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