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Long-term recovery of COVID-19, aka COVID “long-hauler” syndrome, continues to challenge both clinicians and patients 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 what evidence remains elusive in a Feb. 12 media briefing sponsored by the Society of Infectious Diseases 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 have symptoms that last 2 to 6 months or more.
Fatigue appears to be the most common, followed by dyspnea and other lung complications, said Allison Navis, MD, an assistant professor in the Division of Neuro-Infectious Diseases at Icahn School of Medicine in Mount Sinai, New York, during the meeting.
Dr. Allison Navis
Neurological symptoms, especially “brain fog” and numbness or tingling throughout the body, as well as mental health challenges, including post-traumatic stress disorder (PTSD), have also been reported anecdotally, she said.
The symptoms of post-COVID-19 syndrome may be similar to those experienced during acute infection.
Symptomatic infection precedes most cases
People with asymptomatic SARS-CoV-2 infection appear to rarely progress to persistent post-COVID syndrome, said Kathleen Bell, MD, Kimberly Clark Distincted Chair in Mobility Research at UT Southwestern Medical Center in Dallas.
Dr. Kathleen Bell
However, “we certainly see people who have not been hospitalized, who have been acutely ill and have been successful at home,” with post-COVID syndrome, said Bell, who is also a professor and chair of the Department of Medicine. Physics and Rehabilitation at UT Southwestern.
Navis agreed that, in her experience, most people with long-term effects either managed to infect acutely at home or were hospitalized. “There may have been one or two people who probably had an asymptomatic infection and came with a mildly long-lasting COVID syndrome,” she said.
Dangers of hospitalization
For some patients, hospitalization for COVID-19 itself may lead to long-term recovery problems. For example, inpatients who spend a high proportion of time in a prone position may be more likely to experience peripheral neuropathy, Bell said. The associated weakness of the arms and legs can be especially important in people with diabetes.
In addition, a long-term hospital stay can trigger negative health outcomes. “We have people in the hospital for 3 months and, in a large percentage, we notice symptoms of mental health, including PTSD, anxiety and depression,” Bell said. These side effects are not unique to COVID-19, but are also reported in other people who spend weeks or months in critical care, she added.
Some people with mild mental health problems may have made up for it long before their experience with COVID-19, but the stress of acute infection and hospitalization worsens their condition, Bell said.
A local outbreak can also increase the risk of mental health problems. The increase in the number of cases in March and April 2020, for example, “was a very scary time here in New York,” Navis said.
“Some people were isolated in their apartments, hearing the sounds of ambulances and sirens and were worried about their own health and survival,” she said, adding that it also triggered anxiety, depression or PTSD for some.
Consensus and guidelines in work
The World Health Organization issued updated treatment guidelines for COVID-19, including people with persistent symptoms, on January 26th.
The Centers for Disease Control and Prevention is working on guidelines for diagnosing and managing people with post-COVID syndrome, which is very interesting, Bell said. The recommendations are expected to emerge from an event about 3 or 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 the protocols, Navis said.
Many specialized teams and clinics have sprung up to address the growing population of COVID-19 “long distance carriers”.
Interestingly, although many centers initially developed their own protocols for treating this patient population, “we’re starting to sow,” Bell said.
COVID-19 recovery clinics at Bell and Navis institutions focus on multidisciplinary collaboration, including general care and specialists such as pulmonologists, cardiologists and psychiatrists, as well as rehabilitation specialists, to address specific symptoms.
Questions left
It is not known what proportion of people with COVID-19 will progress to post-COVID syndrome. “The expectation is that most people are likely to improve within weeks to months, and about 10 percent to 15 percent will have longer problems,” 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 among men and women. Navis reported a fairly even distribution of cases by sex in his experience.
How vaccination could prevent or alleviate post-COVID syndrome also remains an open question. The vaccines “are so new that it would be a question with crystal balls,” Bell said.
Bell predicted that it would take about 6 months for responses to these and other unknowns about post-COVID syndrome to emerge from larger prospective studies.
Damian McNamara is a Miami-based journalist. It covers a wide range of medical specialties, including infectious diseases, gastroenterology and critical care. Follow Damian on Twitter: @MedReporter.
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