The United States government is launching a national initiative to study COVID-19 patients suffering from residual symptoms months after recovery, commonly known as “long-distance COVID,” said Dr. Anthony Fauci in an interview at the White House on Wednesday -market.
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In this January 21, 2021 photo, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, speaks to reporters at the James Brady Press Briefing Room at the White House.
The country’s leading infectious disease specialist has also revealed a scientific name for the new syndrome – Post-Acute Sequelae of SARS-CoV-2 (PASC) – further legitimizing the suffering population.
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“(There are) many important questions that have not been answered and we hope that with this series of initiatives we can answer,” said Fauci.
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The announcement came after a study published last week in the JAMA Network Open found that about 30% of patients with COVID-19 reported persistent symptoms up to 9 months after the disease.
These symptoms included fatigue, shortness of breath, sleep disturbances, fevers, gastrointestinal problems, anxiety and depression and so-called “brain fog”.
“Sometimes these symptoms appear well after the infection period or evolve over time and can persist … for months, and can range from mild, irritating to really quite disabling,” said Fauci.
The National Institutes of Health hopes to integrate data from existing projects on COVID-19 patients into the initiative. One of these projects is the COVID-19 Neuro Databank-Biobank (or Project NeuroCOVID), a database and biobank led by New York University.
The NeuroCOVID Project, announced on Tuesday, is asking institutions and individual doctors to send information about neurological symptoms, underlying medical conditions, course of the disease, complications and outcomes. They can also send existing samples such as blood, tissue and cerebrospinal fluid to the project’s biobank.
“As so many people fell ill, it became evident that there were so many patients who appeared to have neurological conditions that appeared to be associated with COVID,” said Dr. Sharon Meropol, director of the NeuroCOVID program. “Some of them had new conditions, some of them had existing ones that were exacerbated.”
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The database will accept information about adults, children, pregnant women and their babies. The patient’s identity will be protected by their providers, as only they can see personal information; the NeuroCOVID Project can only see a generated and non-identifiable code that refers to the patient.
Early in the pandemic, health experts speculated that neurological symptoms may have been triggered by a serious COVID-19 disease. But over time, more patients with mild or moderate illnesses began to experience these symptoms, said Dr. Barbara Karp, program director at the NIH’s National Institute of Neurological Diseases and Stroke.
“As we get into long-distance COVID, 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 problems, difficulty concentrating and intense fatigue, according to Dr. Pravin George, a neurologist at the Cleveland Clinic’s neurointensive therapy 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 can 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 fully studied, said George.
“We don’t have the answers, but what is really important is to find out what exists and that is where a national effort like this really plays an important role,” said Karp. “We hope, in the long run, that if we can identify the syndrome, we can develop ways to approach treatment for it.”
Follow Adrianna Rodriguez on Twitter: @AdriannaUSAT.
USA TODAY health and safety coverage is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Health. The Masimo Foundation does not provide editorial contributions.
This article was originally published in USA TODAY: Dr. Anthony Fauci aims to answer ‘many important questions’ about ‘COVID Long-haulers’ in a new national initiative
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