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Scientists funded by the federal government have proposed a definition of long Covid based on symptoms identified in a large study published Thursday in the Journal of the American Medical Association.
The definition is based on 12 symptoms that most separate people with long Covid six months or more after their infection from people who did not have the coronavirus.
Since the very early days of the pandemic, many people have suffered myriad sometimes debilitating symptoms that persist long after they were infected with Covid-19.
Patients adopted the name long Covid. Scientists call the condition post-acute sequelae, or PASC.
But there still is no systematic, universally accepted definition of long Covid for research, and which could serve as the foundation for future tools to diagnose the condition.
“It’s really attempting to come up with a concrete, replicable specific definition for long Covid,” said Dr. Leora Horwitz, author of the study and a professor at NYU Grossman School of Medicine.
The study funded by the National Institutes of Health examined nearly 10,000 participants across 85 hospitals, health centers and community centers in 33 states.
More than 8,600 patients who had Covid were compared with more than 1,100 who did not have the virus.
The research is part of the NIH’s massive $1.15 billion RECOVER research initiative that aims to define long Covid, understand what causes the condition and develop treatments for it. RECOVER is an acronym for Researching COVID to Enhance Recovery.
The symptoms that stood out the most among participants with long Covid included loss of smell and taste, post-exertional malaise, chronic cough, brain fog, thirst, palpitations, chest pain, fatigue, changes in sexual desire, dizziness, gastrointestinal issues, abnormal movements and hair loss.
The scientists assigned points based on how much each symptom distinguished participants with long Covid from those who did not catch the virus.
A participant who has 12 points or more is considered likely to have long Covid.
Loss of smell and taste and post-exertional malaise, for example, stood out more than other symptoms, and had scores of 8 and 7 points, respectively. Palpitations and dizziness, which are characteristic of long Covid, but which are also common symptoms in many other conditions, scored 2 points and 1 point, respectively.
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