Several years ago, the RLS Foundation and others made an attempt to change the name to Willis Ekbom Disease. Part of the reasoning was to change the designation from a syndrome (which is a collection of symptoms that may be due to different origins) to a Disease, which is a condition that has a common and known cause (brain iron deficiency in our case). They worked for several years but eventually gave up because RLS was too entrenched in both popular terms as well as in the medical literature. You still occasionally see WED or RLS/WED in literature and on this board, but the Foundation gave up, changed their name back to RLS from WED and no longer tries to promote WED. Personally, many of us still prefer WED for the reasons that you gave, but the uphill battle for change was more a mountain than a hill and simply could not be overcome.
I have a different slant on it. My main point will be that the disease now has two valid names - Willis-Ekbom disease and RLS. The name WED has been used in the literature so it's a valid name. The Foundation's name doesn't affect that.
The International RLS Study Group (a bunch of doctors who specialize in WED/RLS) - actually, a working group within that group - suggested that the RLS Foundation lead the charge in changing the name, for all the reasons you (JimHCNMT) state:
- it is no longer a syndrome, which is a collection of signs and symptoms of unknown cause, it's a disease with a relatively well-understood physiolgoical cause, or "objectively demonstrable departure from adaptive biological functioning" (
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1480257/).
- it does not affect just the legs
- it is not about restlessness, it's about an uncontrollable urge to move cuased by neurological malfunctioning of some sort
- the name trivializes the disease - as someone else said, what if they called Parkinson's disease "Shaking Head syndrome"?
- I forget what else.
The Foundation discussed the proposal and eventually agreed a change was needed. They started using the name Ekbom disease, without realizing it already existed; then after a month or two they settled on Willis-Ekbom disease. Willis was a dude in the 1600s who provided the first known medical description of WED/RLS. Ekbom was a doctor who in published a description of it in the 1940s, recognized it as a neurological disorder, recognized that iron dysfunction was involved, and that opioids were effective in treating it.
So the Foundation changed its name to the WED Foundation, and started promoting the name WED. For a change like that to make it into the literature, at least 5 years is needed, probably more. With the Foundation pushing for the change, though, it might have only taken 5 years. People started to use it. I still come across some papers that use the name WED.
But after two years, coinciding with a change of the Executive Director of the Foundation (I don't know if that was causative or if other factors were involved), the Foundation did a sudden about-face, and began singing the exact opposite tune. The argument they used was that the RLS name was too well-entrenched, but that doesn;t fly - - they knew it would take at least 5 years to effect the change when they decided to do it.
A quote from a document the IRLSSG produced: "The majority of the group felt that the long-term advantages of a change in name outweighed the disadvantages, although short-term difficulties with recognition and
acceptance were appreciated and both the new and the existing names would need to be
used together during a transition period. The entire group felt that further input should be
obtained, initially from the Board of Directors of the Restless Legs Syndrome Foundation
and the Executive Committee of the International Restless Legs Syndrome Study Group.
If a proposal to change the name were to move forward, it would then be necessary to
canvass the support of other groups such as the Movement Disorder Society, the
American Academy of Sleep Medicine and the American Academy of Neurology."
The whole thing was posted by Ann here:
http://bb.rls.org/viewtopic.php?p=64096#p64096
And here's the Foundation's reason for switching to the old name, Karla speaking: “We have heard from countless Foundation members, healthcare providers and researchers that restless legs syndrome is their preferred term. It is descriptive and easy to use. And it is the name almost universally used in medical and scientific circles, including the daily conversations that our members have with their doctors and families. The familiarity and name recognition of restless legs syndrome will best support the Foundation’s fundraising, membership and education efforts going forward.”
Here's a discussion of an interesting study on the name:
http://bb.rls.org/viewtopic.php?f=5&t=9 ... nge#p80691
So ya, the Foundation changed its name then changed it back again. Meanwhile, a number of scientist picked up on the name Willis-Ekbom disease and started using it. Some still do. So the disease has two names now, and Willis-Ekbom diseae is one of them. It is clearly superior in most ways to the old one, but familiarity will be a hard thing to break now. The Foundation had a wonderful opportunity and ruined it. I can't complain too much because they've been so wonderfully effective in almost all other areas. But it still galls me - the waste of donated money and time and the lost opportunity.
Never mind. I call it WED, or WED/RLS.