doety wrote: (I know we're changing the name, but NUTS....I feel like people finally are learning about RLS and think we'll just confuse them. Sorry, know we're not supposed to argue with it.)
From my perspective,I don't think the Foundation doesn't want an argument - just that it won't likely change anything at this point. The Study Group made it's recommendations, they were accepted, and now we move forward. Talking about it can be helpful if it helps us talk about our concerns, though.
To me, there are many things that changing the name tries to address.
Any syndrome immediately is at a disadvantage in many ways, from perception to fundraising for research. Those scientists can't work fast if no one is helping fund the research. Calling it a disease helps us tremendously in those ways. We only found out in the last few years that it is a disease - there are genes for it. That changes things significantly and keeping the name doesn't help us capitalize on this.
The name it currently has is made fun of by many in the US. That hurts perception tremendously, too.
And, having legs in the name hurts all of those who have it in other body parts - heck, my doctor just thought it couldn't be RLS/WED because I have it 24/7 - the perception is it's only at night. Since legs is in the name, I've heard doctors say that it can't be elsewhere.
There is no doubt in my mind that changing the name will be hard. And some people will be confused. Hopefully that won't last long! In the long run, let's hope the benefits outweigh the concerns. As new students go through med school, they will get a much broader view of it and won't be misguided by the name.
Am I looking forward to it? Partially, but it's going to be very hard!