EXPERTS RAISE ALARM ON COVID-19 ‘LONG-HAULERS’
Say survivors with long-term symptoms need urgent attention
There is an urgent need to address long-term symptoms of the coronavirus, leading public health officials said this week, warning that hundreds of thousands of Americans and millions of people worldwide might experience lingering problems that could impede their ability to work and function normally.
In a two-day meeting Thursday and Friday, the federal government’s first workshop dedicated to longterm COVID-19, public health officials, medical researchers and patients said the condition needed to be recognized as a syndrome, given a name and taken seriously by doctors.
“This is a phenomenon that is really quite real and quite extensive,” Dr. Anthony Fauci, the nation’s top expert on infectious diseases, said at the conference Thursday.
While the number of people affected is still unknown, he said, if long-term symptoms afflict even a small proportion of the millions of people infected with the coronavirus, it is “going to represent a significant public health issue.”
Such symptoms — ranging from breathing trouble to heart issues to cognitive and psychological problems — are already plaguing an untold number of people worldwide. Even for people who were never sick enough to be hospitalized, the aftermath can be long and grueling, with a complex and lasting mix of symptoms.
The Centers for Disease Control and Prevention recently posted a list of some long-term symptoms, including fatigue, joint pain, chest pain, brain fog and depression, but doctors and researchers said they still know little about the extent or cause of many of the problems, which patients will develop them or how to address them.
Over the past several months, coronavirus patients with lingering, debilitating health issues have been widely referred to as “COVID long-haulers.” But some survivors and experts feel that name trivializes the experience, lessening its importance as a medical syndrome that doctors and insurers should recognize, diagnose and try to treat. One of the pressing issues that patients and experts are now weighing is what official medical term should be adopted to describe the collection of post-COVID symptoms.
“We need to dig in and do the work that needs to be done to help relieve the suffering and stop this madness,” said Dr. Michael Saag, an infectious disease expert from the University of Alabama at Birmingham, who was a co-chair of a session.
In an inadvertent but stark illustration of the difficulty of the recovery process, two of the four patients scheduled to speak at the meeting were unable to because they had recently been re-hospitalized.
“Those individuals had their acute illness several months ago, and they’ve been suffering pretty mightily since then,” Saag said. “And the fact that they’re still struggling with this gives extra power to what we’re trying to do today.”
Dr. John Brooks, chief medical officer of the CDC’s COVID-19 response and the co-chair with Saag of one session, said he expected that long-term post-COVID symptoms would affect “on the order of tens of thousands in the United States and possibly hundreds of thousands.”
He added, “If you were to ask me, what do we know about this post-acute phase, I really am hard-pressed to tell you that we know much. This is what we’re really working on epidemiologically: to understand what is it, how many people get it, how long does it last, what causes it, who does it affect — and then, of course, what can we do to prevent it from happening?”
Presentations from COVID-19 survivors — including Dr. Peter Piot, a world-renowned infectious disease expert who helped discover the Ebola virus — made it clear that for many people, recovering from the disease is not like f lipping a switch.
Piot said he contracted the coronavirus in March and was hospitalized for a week in April. The acute phase of his illness involved some but not all of the classic disease symptoms. For example, his oxygen saturation was very low, but he did not develop shortness of breath or a cough until after he got home from the hospital.
For the next month, he experienced a rapid heart rate several hours a day, he said. For nearly four months, he experienced extreme fatigue and insomnia.
“What I found most frustrating personally was that I couldn’t do anything,” said Piot, who now considers himself recovered except for needing more sleep than before his infection. “I just had to wait for improvement.”
Dr. Janet Diaz, head of clinical care for the World Health Organization’s COVID-19 response, said the agency is planning a meeting focused on long-term coronavirus effects and will soon start collecting data on post-COVID symptoms and medical visits.
She said that while doctors are accustomed to prolonged recovery challenges for people hospitalized for serious illnesses, the lingering symptoms in younger people and those who were not hospitalized for the coronavirus “urgently needs to be better understood and investigated.”