#NotJustFatigue took to the streets of Chicago to explore how the names “chronic fatigue syndrome” and “myalgic encephalomyelitis” shape perceptions of the same disease.

When asked about chronic fatigue syndrome, people spoke about overwork, stress, and lack of sleep. Some thought it sounded like something everyone experiences.

When asked about myalgic encephalomyelitis, the tone changed. Although the name was unfamiliar, people thought it sounded much more serious.

“It sounds very serious,” one participant said. Another explained that the average person would be more concerned by that name than by “chronic fatigue.”

These conversations illustrate a frustration patients know well: the name “chronic fatigue syndrome” can make a serious illness sound ordinary. Simply changing the words prompted people in our video to take it more seriously.

Watch the video below and share it to help others understand why the language we use matters.