Tuesday, February 17, 2015

A New Name that Sounds the Same

As most of us with CFS/ME already know, the powers that be have chosen a new name for our illness. I was so excited to hear this, myself, assuming, that, naturally, the new name would be Myalgic Encephalomyelitis. So imagine my dismay upon hearing the new name: Systemic Exertion Intolerance Disease. I almost couldn't believe my eyes. The main problem with the name Chronic Fatigue Syndrome was that it implied that all that was wrong with  the patient was that they were just really tired. So why in the world would they choose a name that pretty much implies the same thing?!?! Actually, it may be worse. Because not only does the name imply that we are simply always tired, now we're tired and we can't handle it. So, for example, the misguided psychologist who told me, when I first got sick, that she hated getting up in the morning and was tired a lot too, implying that I was just needed to quit being a wimp and suck it up, no longer need waste her breath, because the name of the disease says it all. I'm tired and I can't tolerate it. I can't cope. Thanks a lot CFS renaming panel. Thanks a lot.

On the bright side, they are set to review the name and diagnostic criteria again in five years...

Seriously though...what progress have we made, when of all the things wrong with us, the medical establishment is still focusing on fatigue? Okay, so maybe technically "exertion intolerance" isn't exactly the same as fatigue, but it might as well be. They could have made the name reflect the immune system problems. Autoimmunity. Inflammation. Autonomic Dysfunction. But nope. We get to be intolerant to exertion. (Ahem. --Tired.)

No comments:

Post a Comment

Input, input! Tell me what you think!