There does seem a certain amount of agreement that change is needed.but who has the authority to make a change such as this? I would assume that a working party of the RLS UK Charity Members would be appointed by the 'Chair' and report back to it's Members and to this site when a decision had been made. I say 'this site' as I live in France so can not be a Member unless/until an 'Associate Membership' is created in the Charity's 'Articles' accepting overseas Members. I am sure there will be a quite a number of International Associate Members if the possibility comes to fruition.
Getting back to 'Name Change'. I am now in two minds between 'Limbs' and 'Body' (Body, because there appear to be many who suffer back, neck and shoulder pain). The last desciptive word (Syndrome) needs to reflect what category of illness it comes under. See:
medical-dictionary.thefreed... RLS not noted!
I like 'Disease' but to me it implies 'contagious' which it is not. See:
As for the first word - Restless! - Painful - Traumatic - Torturouse - Excruciating. ???
e.g. : Chronic Body Pain Disorder
There is scope for lots of possible new names.
There were a number of 'Answers' that basically said sort of 'What is the point, it is not going to get medics to study RLS to find a cure' - I do not think that is the case, I believe that the more medical personnel, medical students and medical teaching entities are made aware of RLS and kept informed of it's persistance to affect more and more of the general public the greater the need for a cure is perceived leading the way to studies, clinical trials of cures and better understanding of sufferers needs.
As can be seen from the latest question by Daragh, Chair RLS-UK - Urgent - UPDATED: Newspaper Case Studies needed - there are many organisations and entities from all walks of life who want 'information' and 'news'. They want to know about RLS. Many will hear or read about the symptoms of RLS and I am sure that there will be many like me who on reading about RLS for the first time was at last able to say' So THAT is what I have been unknowingly sufferring from for the past 50 years' and to take positive action to alleviate that pain and very importantly, to communicate to fellow sufferers as I am doing now. Thanks Daragh!
Your further thoughts!
Written by
barried
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Barried, we as members have a survey to fill in at some point, about the name change. I think you will find only two options will be available, they are either WED, or RLS. Even if we would like something different to those options. Those are the ones, we will have to vote on, as far as i know.
Yes, it has been discussed to death over the last 5 years or so, and before that. The US Foundation is using WED. And, RLS is what everyone knows. Those are the two choices that would be official. While I applaud your energy and enthusiasm, the discussion of the name change hit it's height when the US RLS Foundation became "doing business as" the WED Foundation. The objection to that is the use of the name Ekbom, the association it has with Ekbom Syndrome( the parapsychosis). Syndrome is only a "collection of symptoms" and Disease is an entity unto itself. That is why they like Disease. I am from the US and have suffered thru this name change for years. I am not remembering the the organization that can do this but will look it up and get back to you. We should be happy we still have RLS for a name globally, except the US and Canada, and not too many doctors and patients in the US are happy with WED at all. We have done awareness work in my groups and other places for RLS for the last decade, and a lot more people and doctors know about RLS now in the US, and I see no reason for the change to WED, except to get rid of the word Syndrome and use the word Disease. My US groups all voted for "Restless Limb Disorder" and that is a LOT of people. The International RLS Study Group are the ones who proposed the WED name to the US RLS Foundation, so maybe you would like to contact them? They are international. But, we are more about raising awareness, than a name change. That train has pretty much left the station.
I am from the UK and I for one agree with the name change although ekbom doesn't make spence to people but I think if you said you had WED people are more likely to ask what it is and maybe a lot more people including medical practitioners will understand just how debilitating this disease is. The word restless and the word syndrome makes people not understand just how bad it is for people as my legs and arms aren't just restless they are in agony most nights and it is a disease as it can be hiredatory and so far it is incurable that is why I totally agree with the name change
I dont agree that people will be more likely to ask whats wrong if you say you have WED,its just 3 letters after all, and thats what RLS is, 3 letters, so why would they be more likely to ask what it is.
Another thing that bothers me is, people have got used to the title RLS, and still lots of them dont or wont believe how we suffer, so, if we go changing the name they will believe us then, i doubt it.
I told one person, ive got WED, their response was to ask me who to !!, so i cant see it working, and how can changing a name make any difference really?? is it going to get more research done, i doubt it very much,
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I agree Tallula, saying you have WED, people i know will ask when did you get wed.!!
I am sure as i try to explain people will start going glassed eyed. You have to explain who the people are Willis and Ekbom. We have to start all over again, in explaining what we have. I have a friend coming in a minute, i am going to say i have got WED, and see what her reaction is.
in reply to
oo, do let me kn oe the respose you get, also i think, if there is a name change, people are going to say, why ??
in reply to
Ok, my friend looked at me in a strange way, and said, what....!! what do you mean you got WED. She knows all about RLS, as she had it when pregnant with one of her boys. So, when i explained it all, she said how stupid is that. Just saying what she thought of it.
Oh,I got the same reaction from my sister the nurse, and she HAS RLS. She was getting glassy-eyed as I explained the story of the doctors going back, back, back to the 17th century. LOL She used the words stupid and ridiculous. She works at Veteran's clinic in out town in the US, and has lots of patients with RLS, and she said she sure is not going to change all the charts!
RLS/WED is also listed in the "Diagnostic and Statistical Manual of Mental Disorders" and that is key to the US name change to WED. It is listed here, so as to show the difference between RLS and The psychosis "Ekbom Syndrome", and with them and the International Study Group backing this WED name, those are the two most important sources. very confusing, I know, but it is basically done. The argument is that we cannot have 2 different names for the same thing, so I get your point. But, we have been "name changed" to death all over for years and years. It is time for more awareness work.
At the end of the day, i dont think it matters a damn what we think as RLS sufferers, the powers that be will have there way, and name it whatever they want to, so i dont intend to stress myself over it, to me its RLS ...
I agree. I have done RLS awareness since 1997, so it will always be RLS to me also.
The Netherlands Foundation is also using WED, but we as RLS sufferers know it as RLS, and what's in a name, the main thing is that there is awareness and a solution for our problem, that's what I think.
"There were a number of 'Answers' that basically said sort of 'What is the point, it is not going to get medics to study RLS to find a cure' - I do not think that is the case, I believe that the more medical personnel, medical students and medical teaching entities are made aware of RLS and kept informed of it's persistance to affect more and more of the general public the greater the need for a cure is perceived leading the way to studies, clinical trials of cures and better understanding of sufferers needs. "
I agree that there does appear to be this lethargy ie what is the point, no one is going to be interested, no point in petitions, nothing comes of them......This is not the attitude we should be taking. If one believes enough in anything, the only way forward is to network, be positive, fight the cause, surely something, however small the seed, will be sown and grow eventually. Beginning with a negative attitude nothing will happen. Daragh does an amazing job. He does not give up, nor should we. I can think of two elderly people that have told me about their RLS not knowing what it was.I enlightened them. Another one said that at the age of 90 it was eventually mentioned to him by a medic that he had RLS. Keep talking, I say and try not to think there is no point, because there is.
I sort of agree, its not a different name that will get awareness out there, its us as the sufferers. I think thats what some were saying, the name if it changed will not help, its us as RLSers who need to get people to realise what this condition is and how it affects us.
I think there has been very positive response to Daragh's newspaper volunteer's for stories.
The name change to WED, is because of the USA Foundation, thats what this is all about.
And no one as far as i saw, said whats the point of petitions.
If the name changed we would still be fighting an uphill battle, to get research done, and telling people we now have WED, not RLS anymore.
Hi Elisse - I was saying that a number of Members felt that changing the name would not change anything which is what you are also saying. What I am saying is that a change or at least the discussion of a change would be 'publicity', a reason for a headline. See my new post at the bottom. Best wishes. Barrie
And, we are saying, while we applaud your enthusiasm, the name change discussion has brought publicity of the last 6 yrs. No one here is saying it won't do any good, it's just that it has been done to death. You missed it all, sadly. But, the discussion goes on. We can NOT LIKE any the two names, but RLS is still way better than WED, and those are our only two choices officially right now. If it does not stay RLS, then it will go go to WED. That and we have done a decade of awareness work or more in the US< and the US foundation those are the two accepted names, writing to congress in the US, especially writing to a congressman who made fun of RLS on TV. He got a TON of letters, one of my members went to Washington DC and had the apology letter handed right to her! so, big letter writing campaigns DO work. We have to pick our battles and that one we WON for sure. People from this site were in on that one that was in 2010. So, not that we are sitting back and doing nothing. we always have a project like that going to raise awareness. I think we need to get more people up on the disease instead of constant name changing. The accusations that are flying around right now, are "oh, your foundation (US) changed the name to "make it sound more serious!" We were all pretty much done with the influx of RLS jokes, so to start with a new name of any kind is kind of counterproductive in "my world". my humble opinion. NO one is juts sitting back and doing nothing. Lots of stuff going on, so juts because we do not support yet another name change, does not mean we have retreated form the awareness battle at ALL.
Primarily my main health problem is Parkinson's Disease rather than RLS.
On the Parkinson's community Healthunlocked page a similar discussion occurred regarding the name change of the main charitable organisation for PD. The following was my contribution to that discussion.
...................... the UK's flagship PD charity used to be called "Parkinson's Disease Society". The charity hired a new CEO and under his direction the PDS underwent a re-branding exercise The name was changed to Parkinson's UK (or PUKE for short lol). I remember speaking to a few people about the name change and was amazed that people thought it an improvement. I just thought it pointless and really a bit feeble.
Then I was told that the name change had cost £46,000 (due to changes to stationery, you know headed notepaper etc and all the things relating to the website etc. etc. etc.
At about the same time my 2 daughters did a fundraising thing at their school and the PDS was nominated and approved as a suitable recipient for funds raised. My daughters contribution raised about £39 from selling a few (quite a few) home made cakes.
I think they were very demotivated to discover that their hard work had been swallowed up many times over without any direct benefit to those of us with PD. I doubt very much if they will ever bother again.
Now if the re-branding exercise ultimately results in receipts for the charity increasing to be greater than the costs plus a bit more then it could be declared worthwhile. I suspect we are unlikely to hear one way or the other..........................
Now is there going to be a similar cost in the change from RLS to WED. I hope not and if there is then I would suggest that that wold be tantamount to a criminal act - Misappropriation of funds or something like that. So please leave RLS alone and do something worthwhile instead
That is an interesting story, i never knew that they were changing the name of Parkinson's Disease. The new name PUKE sounds as bad as WED, WED to me means someone got married..lol. Whats up with everyone..with the name changing malarky!! I agree with you, if it aint broke dont fix it.
VERY interesting! PUKJE and WED. What are we coming to. I especially like dthe comment that the "change" cast 46,000 lb to do stationary, etc, since I was told elsewhere for a different foundation that it would not cost any money to change the name!! LOL Ha! I was called "stupid" for even thinking that it would cost money to do that by certain people! hmmmmmmmm...........I may be a lot of things, but am not stupid for any reason.
What is also interesting is Parkinson's Disease, has dropped the Disease from their title, and everyone wants to ADD Disease to the RLS title. !!!!
I still like your PUKE, as far as i am concerned, its all PUKE, with this name changing of illnesses.
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hmmmm, sorry but im agreeing again Elisse, hope you dont mind
Yes, some people think if something is called a disease then it is contagious. Well they are just plain wrong and should simply be told that disease only means you are not at ease (dis-ease). With the Parkinson's Disease Society it seems to be the result of their new CEO wanting to make his mark and so convey the impression that he is worth his salary.
This re-branding process came from the USA (Ithink?) and seems to have been popular duie to the sheep effect where one company changes its corporate image / brand and as a consequence their business starts to do rather better. Other companies see this and think ah! that's we'll do. They seem to expect that - as if by magic - all problems suddenly subside or vanish completely. This is, of course, all tosh.
Such re-branding / corporate image changes are only really useful or advisable if the existing brand and company image have been severely damaged and need to be changed in order to remove the link between the company, its products etc and the bad, or corrupt or howsoever damaged product / service
And if the company is doing fine then to do this kind of change could do no end of damage as existing customers are lost because they are unaware of the new name or feel that the newly named product is inferior.in some way.
Thanks again for all the replies to this second question regarding 'Name Change'.
I particularilly thank a number of Members who informed me of the history relating to the RLS name and the rise of WED in the United States. As I and many others are new to this forum the scenario of 'Name Changes' in the past is new information so I partially apologise for bringing the subject up again. I say 'partially' because as I have introduced the subject to the forum it has created discussion amongst the Members and provided information to newer Members.
One Member informed us that in the US 'Restless Limbs Disease' was favoured by a substantial number of Americans - I also agree it would describe the ailment more than RLS or WED. I believe that in our dealings with the outside world we need to use less abbreviations (RLS, WED or others) and use the actual words and that is why the name needs to reflect what the ailment is. People tend to want to know what is being spoken about and they cannot do that looking at abbreviations.
The undermining reason for change is the opportunity for publicity. How do we get more coverage (publicity) into the public domain? The press and media need 'news', 'information' or 'drama', headlines that shout 'Read this' or 'See this'. We need a reason for the general public to want to read and learn about RLS. A change of name or discussion of change could provide that 'reason'. We have no 'product' to publicise - we need a product (reason)!
Well, its a bit of a sore point with me, the media i mean, we have hardly had any response to the offer of newspapers interviewing us. Im hoping for a paper near me to ask i would love to be a guineapig, or whatever you want to call it, if we want help, we have to be more vocal, its ok letting others do the hard work, and then us sitting back when we have the opportunity to make ourselves heard, i say we get it out there, yell your heads of at them !! what ever you want to call it, just let them know we exist
Barried we are trying to get more coverage in the press about RLS, Daragh is doing his best to do just that. But he cant do it without us, so i hope he has some members who live in the area's he has put up on this forum. Its our chance to tell our story, We dont need a name change to get our story in the media, we just need volunteers, to tell their story to the papers who have so far have shown interest.
in reply to
oo you agreeing with me for a change , usually the other way around
As far as using Syndrome as opposed to Disease..........syndrome means "a collection of symptoms" and Disease juts means "an entity unto itself", so it makes it more REAL to professionals,which I have been told by many professionals. But, not one of my doctors, and there are a LOT, think that WED is going to change or help anything. There are only two choices left after the last 5 yrs and I gave references to who makes this decision. It is either RLS or WED. We cannot add a third name in there. IT is too confusing already for many many people. There is a WED page on FB, and people have a VERY hard time finding it, because searching RLS does not bring it up, since they changed. The billing codes are also set (in the US) for lab sheets , etc, and that took 7 yrs to juts get a code for it. When we say we have been working hard on this for years, we mean it. I will always use RLS, I said, I applaud your enthusiasm, but that name change train has left the station so to speak. BUt, we appreciate all your thoughts.
I found out there was even a name for it in 1997. I always said I had growing pains or jumpy legs until I was listening to a radio show that talked about it. I made an appointment immediately with my doctor who sent me to a top neurologists and he diagnosed almost immediately! There is a large organization in the U.S. and Can. It is rls.org
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But, we are more about raising awareness, than a name change. That train has pretty much left the station.
, usually the other way around
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