ME: Counting Heads

Data Brief Number 488

Copyright 2024 Hillary Johnson. All Rights Reserved.

Last December 2023, the Centers for Disease Control issued a new prevalence estimate for ME in the United States. According to the CDC, 3.3 million people have been diagnosed with the disease by a doctor. This is a significantly revised number, adding nearly one million more cases of ME to the CDC’s long-standing official estimate of 836,000 to 2.5 million.

The Atlanta agency’s earlier estimate came from the Institute of Medicine’s (IOM) report on ME, published with fanfare in 2015.

Notably, in 2015 the IOM’s estimate was sixteen years old. That’s because IOM reviewers lifted the 836,000 to 2.5 million estimate from a 1999 paper by DePaul University psychologist Leonard Jason. The IOM authors failed to clarify that the prevalence numbers they cited were already quite old. Because of inadequate epidemiology on ME they likely were at a loss for more recent or more reliable numbers.

Nevertheless, the 836,000 to 2.5 million prevalence figure is a quarter-century old.

The CDC’s new, broader estimate works out to be 1.3 percent of the US population. In other words, more than one person out of every hundred is sick with ME in the United States.