Well the latest in the ME/CFS world is what to call it again?
But how important is a name? My name is Jane, does that tell you what I am like, how I behave, what I look like? My name means gracious, gift from god, I guess that would depend who you ask as to whether they think that is true.
Does the name of an illness have to describe what it is? Cancer doesn’t tell you what it is, or Diabetes. Many illnesses are named after people Parkinson’s or Huntington’s. Has anyone ever heard of Guillain Barre Syndrome or Diabetes Insipidus? Not many, but they don’t think less of it because they don’t understand the name.
When people hear the word cancer their immediate reaction is that it is fatal, actually y not many people die from it these days, but I am sure that changing the name won’t make any difference and the emphasis is on getting quick and effective treatments.
ME/CFS was first called Myalgic Encephalomyelitis, but got changed to Chronic Fatigue as no one knew what Myalgic Encephalomyelitis meant. Some believe that ME and CFS are different illnesses as there is much more to ME that chronic fatigue.
Literally Myalgic Encephalomyelitis means
Myalgia – Muscle pain
Encephalomyelitis – Inflammation of the brain and or spinal cord.
But does that matter? What is important is that it is a serious and debilitating condition that is not taken seriously. The time that is wasted thinking of a suitable name takes away from developing diagnosis techniques and research into causes and treatments. Whatever it is called it will never lose the stigma attached to being Chronic Fatigue or Yuppie Flu, it might get more respect if it was called We Don’t Have A Clue Syndrome!
The proposed new name is SEID, Systemic Exertion Intolerance Disease, hmmmm what does that say, sounds like idleitis to me. Someone did an internet search for SEID and the first thing that came up was
What is in a name? ME, CFS, SEID? I don’t really care what it is called, it already has a stigma and will never lose that, more needs to be put into proper diagnostics and treatment instead of what to call it, why does the name need to say what it is, other illnesses don’t and they are taken seriously.
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com