RLS dissed again on TV
Zach I just clicked on your website, ok, the one you listed above,
"Here's a more recent attack, from this year"
Ok, I just read the title and I'm made.
RLS Foundation (aka GSK?)
O MY GOSH> 
Ok, now I'm just torked off again. What a dweb this person is and that MD did me in as well.
I only wish I culd get a grant for a tour of the US and anyone of you could come with me. Get BI (pharm company) to loan us the restless leg syndrome boot simulator. If some one could help us raise the funds, and BUT, we need someone that could really helps us reach the masses of docs at once while in their area........we could share our stories, give them a great beginning to a good RLS education and certainly, ipen some eyes with the boot.
Anyone know how to get money like that? I'd go and think a few other would go with me. Road trip.
AS for the Name Restless Leg Syndrome and getting it changed, we need two thing asap.
1. a new name.
2. petition with some big number of names. World wide would be fine by me.
I honestly have sen this board and it's members do amazing things (large scale) for themselves..........we just teamed up and charged for the goal in mind.
We got it many time as well.
Just my thoughts.
Lynne
"Here's a more recent attack, from this year"
Ok, I just read the title and I'm made.
RLS Foundation (aka GSK?)
O MY GOSH>
Ok, now I'm just torked off again. What a dweb this person is and that MD did me in as well.
I only wish I culd get a grant for a tour of the US and anyone of you could come with me. Get BI (pharm company) to loan us the restless leg syndrome boot simulator. If some one could help us raise the funds, and BUT, we need someone that could really helps us reach the masses of docs at once while in their area........we could share our stories, give them a great beginning to a good RLS education and certainly, ipen some eyes with the boot.
Anyone know how to get money like that? I'd go and think a few other would go with me. Road trip.
AS for the Name Restless Leg Syndrome and getting it changed, we need two thing asap.
1. a new name.
2. petition with some big number of names. World wide would be fine by me.
I honestly have sen this board and it's members do amazing things (large scale) for themselves..........we just teamed up and charged for the goal in mind.
We got it many time as well.
Just my thoughts.
Lynne
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Lynne, I also thought that other diseases were renamed and it wasn't a big deal. But, when I spoke to someone at the Foundation, I was told that this was a problem because of all the research that had been done, that changing references to the name would create lots of problems.
Who would be an expert on this? To changed hearts and minds, we first have to know what the objections are and come up with reasons that the objections can be overcome.
So, if this is an argument against, we need to find out what this process entails, how expensive it is, what it affects, etc.
Who would be an expert on this? To changed hearts and minds, we first have to know what the objections are and come up with reasons that the objections can be overcome.
So, if this is an argument against, we need to find out what this process entails, how expensive it is, what it affects, etc.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
tazzer wrote:i like the huge fonts....but thanks for your input
That u like posting this way is one thing but having consideration for others is another. Posting in big fonts is considered on most forums as shouting and doing it on a continuous basis is universally frowned upon.
A man generally has two reasons for doing a thing. One that sounds good, and a real one. ~ J. Pierpoint Morgan
HEY GUESS WHAT...I WAS SHOUTING....DID I NOT SAY I WAS PISSED!!!! DID YOU ALL MISS THAT PART!!!
IF I WANT TO SHOUT, I WILL SHOUT! IF YOU DON'T LIKE IT, SKIP OVER AND DON'T READ IT.
WHAT ARE YOU THE KGB FOR THE RLS BOARD???? I REALLY AM NOT IN THE MOOD FOR THIS BS! THIS IS WHY I LEFT FOR SO LONG IN THE FIRST PLACE, BUT I DECIDED I DON'T CARE WHAT SOME OF YOU THINK I WILL SAY WHAT I WANT! FREE COUNTRY LAST I REMEMBER....JUST THINK OF IT LIKE A RADIO, IF YOU DON'T LIKE THE TUNE...CHANGE THE DAMN DIAL!!!!!!!!!!!!!
DEE
IF I WANT TO SHOUT, I WILL SHOUT! IF YOU DON'T LIKE IT, SKIP OVER AND DON'T READ IT.
WHAT ARE YOU THE KGB FOR THE RLS BOARD???? I REALLY AM NOT IN THE MOOD FOR THIS BS! THIS IS WHY I LEFT FOR SO LONG IN THE FIRST PLACE, BUT I DECIDED I DON'T CARE WHAT SOME OF YOU THINK I WILL SAY WHAT I WANT! FREE COUNTRY LAST I REMEMBER....JUST THINK OF IT LIKE A RADIO, IF YOU DON'T LIKE THE TUNE...CHANGE THE DAMN DIAL!!!!!!!!!!!!!
DEE
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Lol,
say what u want? Do u own this board(not)? Just by posting such things u are showing disrespect for the folks that do, the staff and members imo. U seem to be oblivious to that fact that there are rules and regulations here as there are on every forum. There is no democracy. It's a privately owned forum. The owners and staff decide what the rules are, not u.
U are lucky they are lenient here. Other boards i particapate on would not tolerate such behaviour. U would be out. I wish they had an"ignore user" option here as they do on other boards, if so, u would be at the top of my list.
say what u want? Do u own this board(not)? Just by posting such things u are showing disrespect for the folks that do, the staff and members imo. U seem to be oblivious to that fact that there are rules and regulations here as there are on every forum. There is no democracy. It's a privately owned forum. The owners and staff decide what the rules are, not u.
U are lucky they are lenient here. Other boards i particapate on would not tolerate such behaviour. U would be out. I wish they had an"ignore user" option here as they do on other boards, if so, u would be at the top of my list.
A man generally has two reasons for doing a thing. One that sounds good, and a real one. ~ J. Pierpoint Morgan
Honestly, I really didn't care.. But now I see you're doing it out of spite and that is just lame..
If you like big font, ok? Increase the general font size in your browser options. That's a pretty simple solution..
I'm sure now the moderators are gonna step in because this is becoming a flame war, so whatever I guess.
I've never had a particular problem with you, but this is not the first time you've gone off on the "anyone who doesn't agree with my view is a nazi/whatever" tangent.. And it's no wonder you don't like it here..
We are all pretty understanding of each other and give leeway, but its a two way street. We're not your enemies, but if you keep treating people here like this, then its no wonder you think everyone is out to get you.
Everyone just take a damn chill pill already
/shrug
If you like big font, ok? Increase the general font size in your browser options. That's a pretty simple solution..
I'm sure now the moderators are gonna step in because this is becoming a flame war, so whatever I guess.
I've never had a particular problem with you, but this is not the first time you've gone off on the "anyone who doesn't agree with my view is a nazi/whatever" tangent.. And it's no wonder you don't like it here..
We are all pretty understanding of each other and give leeway, but its a two way street. We're not your enemies, but if you keep treating people here like this, then its no wonder you think everyone is out to get you.
Everyone just take a damn chill pill already
/shrug
Ok, Kids ENOUGH! Let's go back to simply talking, can we?
Ann, yes names of disorders and things like RLS are changed when it's needed.
The whole idea that they can't change it because of research is bunk.
The PR person I have in the family and has worked in the field for 20+ yrs., says that normally a PR firm will suggest it first and it's the foundation that would need to comply or say yes.
If we came up with a better name and then REALLY petitioned the Foundation it could happen. If WE WANTED IT TO!!!
It's not uncommon or even unheard of, so I would think that it's this foundation's problem with the name change, not anything else.
Just my thoughts and what I have been told, by someone in the know.
I have really thought about it and I cant' seem to think of a name that really supports what we all have, but time will help with that.
Lynne
Ann, yes names of disorders and things like RLS are changed when it's needed.
The whole idea that they can't change it because of research is bunk.
The PR person I have in the family and has worked in the field for 20+ yrs., says that normally a PR firm will suggest it first and it's the foundation that would need to comply or say yes.
If we came up with a better name and then REALLY petitioned the Foundation it could happen. If WE WANTED IT TO!!!
It's not uncommon or even unheard of, so I would think that it's this foundation's problem with the name change, not anything else.
Just my thoughts and what I have been told, by someone in the know.
I have really thought about it and I cant' seem to think of a name that really supports what we all have, but time will help with that.
Lynne
you know what **** it! it was stupid to even bother coming back here...and consider this my resignation as group leader RLS foundation people you will be getting it in the mail also....this has just become a bunch of lame old fogey's and its only ok if your so **** happy that flowers are falling out of your ****! well guess what? i am not one of those people right at the moment and the large font was to get the point across that i was mad about something and apparently some of you don't read and just see large font and go ballistic....i clearly stated i was pissed about a subject and that was my way of yelling about it, but someone wants to wave a red flag in front of my face...and make me even madder than i was to begin with! and i am sick of the thought police that are on this board....no and i am not talking about the moderators.
zach you are one to talk, i have read some of your "lame" ramblings that make absolutely no sense and you want to call it a "nazi/tangent" now that did make me laugh....(see i read the whole post) oh and also let me reiterate...i am pissed zach not paranoid....i don't recall thinking people are out to get me!!! that was stupid for you to even say!
as for you snowbound you look pretty new, and i'll let you off light, do i own the board, no, and my thoughts and ideas are not showing disrespect to anyone, i was just mad and if the board doesn't like the LARGE fonts then they wouldn't be there to use in the first place. 2nd i know alot can read the larger font easier and if you had been a member here long enough you would have known of this discussion that happened a while back. I know the rules, did I not mention I was a group leader...i think we have to know the rules. 3rd i also had to laugh about the "leniancy" God i felt like i was back in high school getting chewed out by some puckered old teacher. 4th and last it would be great to have an ignore button, then i could ignore you.
This place used to be fun and everyone joked around, and we talked about alot of serious issues too, but a few people have ruined that and it's just not worth it, sorry to those of you who asked me back you know who you are, no need in naming names, but thank you for asking me to come back. Well nuff said! muaahhhhhh!
zach you are one to talk, i have read some of your "lame" ramblings that make absolutely no sense and you want to call it a "nazi/tangent" now that did make me laugh....(see i read the whole post) oh and also let me reiterate...i am pissed zach not paranoid....i don't recall thinking people are out to get me!!! that was stupid for you to even say!
as for you snowbound you look pretty new, and i'll let you off light, do i own the board, no, and my thoughts and ideas are not showing disrespect to anyone, i was just mad and if the board doesn't like the LARGE fonts then they wouldn't be there to use in the first place. 2nd i know alot can read the larger font easier and if you had been a member here long enough you would have known of this discussion that happened a while back. I know the rules, did I not mention I was a group leader...i think we have to know the rules. 3rd i also had to laugh about the "leniancy" God i felt like i was back in high school getting chewed out by some puckered old teacher. 4th and last it would be great to have an ignore button, then i could ignore you.
This place used to be fun and everyone joked around, and we talked about alot of serious issues too, but a few people have ruined that and it's just not worth it, sorry to those of you who asked me back you know who you are, no need in naming names, but thank you for asking me to come back. Well nuff said! muaahhhhhh!
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
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cornelia
Tazzer, when you started to come back here I thought: hmmm, I think she has learned something, she can be nice and grown up, but boy am I mistaken! I wonder what you think to gain with this attitude. You are a very angry woman and you must be an unhappy one too; I feel sorry for that. Hope that at one time in life you will find peace with yourself, I really do.
Corrie
Corrie
You can attack me all you want, because I've got nothing to hide. But anyone who goes back and compares all my posts will see that all I did was adjust to the community here and it wasn't even that difficult to do.
The difference between you and I appears to be that I made the transition, and I don't carry a big chip on my shoulder about everything under the sun that goes on here.
I really don't know what happened to make you so angry, because you were not like this when I originally came around, or at least you weren't this bad.. This place has grown a lot since then, and many new people have come, some have gone..
I don't know, maybe you just don't handle change that well, and aren't enjoying whatever amount of center attention you get now compared to what you used to receive from others. That's sure what it looks like... It wouldn't be the first time in the history of the Internet a "regular" has complained about their board no longer being home and stalked off in a fit.
I know this kind of back and forth is frowned upon, but I'm not going down with her unchallenged... I'll say it again, I think we should just close this thread and move on, because no one has anything civil left to say from what I can tell. She's going to stay pissed at us, and human nature won't let me stop responding here.. So, let's just move on.. When no one has anything to say she'll get bored and go troll somewhere else.
The difference between you and I appears to be that I made the transition, and I don't carry a big chip on my shoulder about everything under the sun that goes on here.
I really don't know what happened to make you so angry, because you were not like this when I originally came around, or at least you weren't this bad.. This place has grown a lot since then, and many new people have come, some have gone..
I don't know, maybe you just don't handle change that well, and aren't enjoying whatever amount of center attention you get now compared to what you used to receive from others. That's sure what it looks like... It wouldn't be the first time in the history of the Internet a "regular" has complained about their board no longer being home and stalked off in a fit.
I know this kind of back and forth is frowned upon, but I'm not going down with her unchallenged... I'll say it again, I think we should just close this thread and move on, because no one has anything civil left to say from what I can tell. She's going to stay pissed at us, and human nature won't let me stop responding here.. So, let's just move on.. When no one has anything to say she'll get bored and go troll somewhere else.
[color=red]Moderator Lock[/color]
Ok, since no one can read everything or seem to let it be, the thread is locked. I believe I asked Nice several times.
DO NOT START A NEW THREAD TO WHINE, CRY, OR CARRY THIS ON IT WILL BE DELETED.
Simply silly, over the usage of a font size.
We were having a real discussion and this is where it has ended.
Not one person is above everything here and not one person is more important than another.
This was a waste of a great thread and discussion.
Lynne
MODERATOR
DO NOT START A NEW THREAD TO WHINE, CRY, OR CARRY THIS ON IT WILL BE DELETED.
Simply silly, over the usage of a font size.
We were having a real discussion and this is where it has ended.
Not one person is above everything here and not one person is more important than another.
This was a waste of a great thread and discussion.
Lynne
MODERATOR