If you have chronic fatigue syndrome, you’re probably aware that patients in the U.S. have lobbied for many years to have the name changed. Why? Because the name CFS trivializes a very serious illness. No disease should be called by just one of its symptoms. No one would think of calling Parkinson’s Disease chronic shakiness syndrome, nor would they call Alzheimer’s chronic forgetfulness syndrome. It’s difficult for people to take an illness seriously when they think it just means you’re tired a lot. To add insult to injury, in most of the world CFS is known as ME (myalgic encephalomyelitis or myalgic encephalopathy), but not in the U.S.
Up until now, past name change efforts spearheaded by patient organizations have failed. However, there’s a new effort afoot that I believe has a good chance of finally succeeding. What’s the difference you ask? This time the movement began with the researchers and specialists who deal with CFS every day –– the people with the power and influence to really make a difference.
I’ll be sharing more details about this effort in upcoming weeks. In the meantime, if you’d like to know more about the history of CFS and past efforts to change the name, read: “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name.”
Published On: April 30, 2007