What’s in a Name?
The name “chronic fatigue syndrome” is misleading and trivializes the serious and complex nature of the disorder. Patients have been calling for a change of the name since it was first adopted in 1988.
It is difficult to get the medical community and the government to look deeper and discover just how serious the illness really is because “chronic fatigue syndrome” downplays the severity of the disease and is hurtful to patients. Indeed, the name carries a negative stigma with medical professionals and the general public, which collides with patients’ access to medical care and social services.
Canada Embraces the Name Change
In Canada, “CFS” was changed to “ME/CFS” years ago because it is believed to be diagnostically accurate and, unlike “CFS” it is not pejorative to patients. ME refers to Myalgic Encephalomyelitis, a term used in Britain for many years and is used to describe the disease process. “My” refers to muscle, “algic” means pain, “encephalo” refers to brain, “myel” to spinal cord and “itis” denotes inflammation.
Laura Hillenbrand is the award-winning author of Seabiscuit: An American Legend and Unbroken.
Ms. Hillenbrand has been suffering from severe ME/CFS since the age of 19 . When asked to comment on the name CFS she wrote “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”
Deborah Kotz Asks Her Readers to Vote
It wasn’t until watching a video sent to her by one of her readers that, the Boston Globe’s health reporter, Deborah Kotz realized that CFS is about so much more than just “being tired and low energy all the time.” In her June 1, 2011 article Kotz acknowledges how serious ME/CFS is and asks her readers to vote on whether or not the illness deserves a better name.
You can read Deborah Kotz’s article and cast your vote for a new name for Chronic Fatigue Syndrome here.