COVID-19 has been a tangle of alarming riddles wrapped in perplexing enigmas and devastating consequences. It has killed more than a million people in the United States and seven million worldwide. The pandemic’s fallout includes many millions more with unrelenting, disabling, systemic conditions known as “long COVID.”
In the United States, research shows that about 7% of adults and 1% of children – that’s 15 to 20 million Americans – have had long COVID. It is reasonable to speculate that new cases of long COVID are developing and will continue to emerge since COVID-19 shows no sign of going away permanently. We can only hope to get better at the prevention and treatment of acute COVID infections and its long-term complications.
So, what exactly does it mean when physicians say “long COVID,” and what process do we go through when it comes to defining diseases? Let’s break down how doctors do this and why it’s important.
Knowledge in medicine is advanced through research and experience – the so-called “evidence-based” information which has become not just a descriptor but a catchphrase. From my viewpoint, medicine has always been, to a degree, evidence-based – what works, what doesn’t work.
To share and use information, whatever its means of collection, health professionals, including researchers, need to speak a common language. If one research team makes discoveries about long COVID and publishes their findings, that information is useful only if the readers have the same definition of long COVID (i.e., they are talking about the same entity).
A variety of definitions had been advanced for long COVID, but none gained wide acceptance. In recognition of this shortcoming, the Administration for Strategic Preparedness and Response and the Department of Health and Human Services assigned the National Academies of Sciences, Engineering, and Medicine the task of developing a definition for long COVID that considers the needs of patients as well as the views and understanding of experts.
Committee members reported that the process of developing a definition gave them a deeper appreciation for the reality and severity of the condition. There were no standardized guidelines for defining a disease, so they identified five criteria for such a definition:
The committee determined at the beginning that interaction with patients who were affected by long COVID was essential. The term “long COVID” was created by patients.