Topic of the Year

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Rustsmith
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Re: Topic of the Year

Post by Rustsmith »

Jim, many of us agree that Restless Legs is a poor name for our condition. Partly because it makes everyone (including many doctors) think that it is limited to the legs and partly because it does not convey the seriousness of the condition for those of us whose RLS is on the more severe side of moderate.

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Polar Bear
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Re: Topic of the Year

Post by Polar Bear »

I agree that the name Restless Legs Syndrome lends itself to be a target for humour, eye rolling and in some cases treating us sufferers as if we are 'snowflakes''.

There has been more than one occasion when a person has in some way scoffed or made a smart **** comment in my presence inferring that our condition is not much more than a minor inconvenience - a bit of a joke.

I will say that normally I am pretty non confrontational and will generally let a smart **** (or to be kind,the ill informed) get on with acting smart. But if something really matters to me I can be like Mamma Bear looking out for Baby Bear. And trust me, I am very protective of all sufferers of RLS.
Several people have had an unexpected conversation with me that they'd rather not have endured.

I went through a spell when I used the term Movement Disorder but it felt like a betrayal, it wasn't getting the word out with regard to Restless Legs Syndrome. Now I will take any opportunity to speak out. If I have to move past folks to get space it's.... Excuse me... I have RLS. Pardon me... I have RLS. Saying the title in full. I have a RLS Foundation sticker on my car. There is also one in the window of my house.

It is/was exactly as Rustsmith says, we did our best regarding WED as a new title but it was too big a mountain to climb.

The best we can do is spread the word and hope the listeners take on board the suffering endured and how serious and life damaging is Restless Legs Syndrome.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

JimHCNMT
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Re: Topic of the Year

Post by JimHCNMT »

PB & R, Appreciate your thoughts and the opportunity to vent :wink:

mack
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Joined: Tue Feb 04, 2020 7:11 pm

Re: Topic of the Year

Post by mack »

Yes, the term "Restless Legs Syndrome" sounds like a disease for hypochondriacs.

But just the sleep deprivation can cause one to lose hope. (Heck, its used in wartime to break down enemy soldiers.) But RLS sufferers must endure far worse that just that. The nights of dragging yourself around the floor, walking exhausted, having to work next day with no rest, getting prescriptions that make things worse, etc. We know about all of this. But its difficult to get this across even to doctors. And a misnomer like "Restless Legs" doesn't help any.

Polar Bear
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Re: Topic of the Year

Post by Polar Bear »

Mack.... "" sounds like a disease for hypochondriacs" "

That has to be the best I've heard ......
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Topic of the Year

Post by badnights »

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.
Beth - Wishing you a restful sleep tonight
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