The U.S. government is launching a nationwide initiative to study COVID-19 patients who suffer from residual symptoms months after recovery, commonly known as “COVID long-haulers,” Dr. Anthony Fauci said in a White House briefing Wednesday.
The nation’s leading infectious diseases expert also revealed a scientific name for the new syndrome – Post Acute Sequelae of SARS-CoV-2 (PASC) – further legitimizing the suffering population.
“(There are) a lot of important questions that are now unanswered that we hope with this series of initiatives we will ultimately answer,” Fauci said.
The announcement comes after a study published last week in JAMA Network Open found about 30% of COVID-19 patients reported persistent symptoms as long as 9 months after illness.
These symptoms included fatigue, shortness of breath, sleeping disorders, fevers, gastrointestinal issues, anxiety and depression, and so-called “brain fog.”
“Sometimes these symptoms arise well after the time of infection or they evolve over time and they may persist … for months, and can range from mild, annoying to actually quite incapacitating,” Fauci said.
The National Institutes of Health expects to integrate data from existing projects on COVID-19 patients into the initiative. One such project is the COVID-19 Neuro Databank-Biobank (or the NeuroCOVID Project), a database and biobank led by New York University.
The NeuroCOVID Project, announced Tuesday, is asking institutions and individual clinicians to submit information about neurological symptoms, underlying medical conditions, disease course, complications and outcomes. They also can submit existing specimens such as blood, tissue and cerebrospinal fluid to the project’s biobank.
“As so many people got sick, it became evident that there were so many patients that seemed to have neurologic conditions that seemed to be associated with COVID,” said Dr. Sharon Meropol, program director of the NeuroCOVID project. “Some of them had new conditions, some of them had existing ones that were exacerbated.”
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The databank will accept information on adults, children, pregnant women and their babies. Patient identity will be protected by their providers as only they can see personal information; the NeuroCOVID Project can see only a generated, unidentifiable code that refers to the patient.
At the beginning of the pandemic, health experts speculated neurological symptoms may have been triggered by severe COVID-19 disease. But as time wore on, more patients with mild or moderate disease began showing these symptoms, said Dr. Barbara Karp, program director at the NIH’s National Institute of Neurological Disorders and Stroke.
“As we get into COVID long-haulers, the long-term consequences of COVID … a lot of that is the neurological domain,” she said.
The most common symptom among long haulers is brain fog, which includes memory issues, difficulty concentrating and intense fatigue, according to Dr. Pravin George, a neurologist at the Cleveland Clinic’s neuro-intensive care unit.
One explanation for the symptoms could be that the immune system attacks normal cells in the body during infection, including brain cells, he said. It could also be caused by inflammation or low oxygen levels that are characteristic of the disease.
No one can know for sure until this population is thoroughly studied, George said.
“We don’t have the answers, but what’s really important is to find out what’s there and that’s where a nationwide effort like this really plays an important role,” Karp said. “We’re hoping in the long run that if we can identify the syndrome then we can develop ways to approach treatment for it.”
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