ViewsAskew mentioned in another thread about educating writers and reporters about RLS. It's always good to email/write after a positive and truthful story. But, sometimes a misinformed writer gets incorrect information to the general public... NOT GOOD!
But this can be turned into a positive. With a little searching, that newspaper, magazine, TV show, or online news article can be contacted by mail or email.
I encourage everyone who is comfortable with writing a kind letter showing facts where ever that particular article was incorrect. This forum has plenty of links to disprove incorrect journalism like the RLS Algorithm, the RLS foundation (www.rls.org), etc. Maybe that writer would be willing to do a follow up story.
This thread is to highlight good articles to notify the writers and praise them as well as highlight bad articles and offer education using facts and tactful words. Sound good?
RLS Advocacy in the Media
RLS Advocacy in the Media
Last edited by Hos on Fri Nov 24, 2006 7:13 am, edited 1 time in total.
I just Googled "rls" in Google News and came up with this one pretty quick. It doesn't say who wrote it. But the editor of the Monterey Herald is: mheditor@montereyherald.com
The email for the National Sleep Foundation to suggest they were misquoted is: ltumminello@sleepfoundation.org
http://www.montereyherald.com/mld/monte ... 977535.htm
"No medical treatment for RLS is available currently..." HUH??? As you can read from the link below, the National Sleep Foundation might not be happy that they were cited for this article which contradicts with their treatment.
http://www.sleepfoundation.org/sleeptio ... =treatment
_____________________________________________________
Here's another one below with almost exactly the same phrases as the quoted text aboveabout "no medical treatment" but just from another newspaper. False info comes out and I guess newspapers have space to fill but I wish they would check their sources.
http://www.kansascity.com/mld/kansascit ... 971358.htm
It appears that McClatchy Information Services (the old Knight-Ridder) sold this story all over.
Wow, we got work to do! I wonder how the RLS Foundation staff handles such matters if they have time to respond to these news agencies who can sell a story to newspapers all over the country...
The email for the National Sleep Foundation to suggest they were misquoted is: ltumminello@sleepfoundation.org
http://www.montereyherald.com/mld/monte ... 977535.htm
From Nov. 10, 2006 by ,,,
Good to know
Family & health
Coping with RLS
Do you sometimes experience an involuntary twitch or sudden spasm in your legs while resting in bed at night? If so, you may have a case of Restless Legs Syndrome. RLS typically occurs during nighttime hours and can interrupt a person's sleep. ...While there is no specific medical test for RLS, there are a couple of ways to cope with the condition...
• Talk with a physician if you suspect you may have RLS. While no medical treatment for RLS is available currently, your doctor can conduct tests to rule out other conditions that might involve RLS-type symptoms.
-- Source: National Sleep Foundation
"No medical treatment for RLS is available currently..." HUH??? As you can read from the link below, the National Sleep Foundation might not be happy that they were cited for this article which contradicts with their treatment.
http://www.sleepfoundation.org/sleeptio ... =treatment
_____________________________________________________
Here's another one below with almost exactly the same phrases as the quoted text aboveabout "no medical treatment" but just from another newspaper. False info comes out and I guess newspapers have space to fill but I wish they would check their sources.
http://www.kansascity.com/mld/kansascit ... 971358.htm
It appears that McClatchy Information Services (the old Knight-Ridder) sold this story all over.
Wow, we got work to do! I wonder how the RLS Foundation staff handles such matters if they have time to respond to these news agencies who can sell a story to newspapers all over the country...
Yes, I would agree, but I want all to understand that an editor with a pen or a computer can easily change and play with our words. We need honest reporting and trust worthy editting to go with it.
I can't tell you how many times last year or so, that my husband and I have had marriage problems over, MY RLS, NOT or somehow my grandmother and I ended up in a casino at 4 am. LOL Ok, we would go, but we were normally home by 4 am, not just going out. LOL God I miss her and she is certainly one reason that I think I work, myself into a tizzy thinking I can make a difference. Anyway, they can honestly write what they want to, let's be just as on it, when they mess it up.
So yes, lets go for it, but watch what you say, make sure it is honest and truthful, factfilled. But watch your back.
Lynne
I can't tell you how many times last year or so, that my husband and I have had marriage problems over, MY RLS, NOT or somehow my grandmother and I ended up in a casino at 4 am. LOL Ok, we would go, but we were normally home by 4 am, not just going out. LOL God I miss her and she is certainly one reason that I think I work, myself into a tizzy thinking I can make a difference. Anyway, they can honestly write what they want to, let's be just as on it, when they mess it up.
So yes, lets go for it, but watch what you say, make sure it is honest and truthful, factfilled. But watch your back.
Lynne
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Lynne has a very important point. You can say many things, but any sentence can be taken out and served alone.
It's also important that we do not sound like raving lunatics. This is the worst thing we can do - it takes away any credibility we might have. Honest, from the heart, but balanced and even.
It's also important that we do not sound like raving lunatics. This is the worst thing we can do - it takes away any credibility we might have. Honest, from the heart, but balanced and even.
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.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I agree with Lynne and Ann. I just want so badly to FRY any reporter who comes up with the whold disease mongering aspect or plays down the seriousness of RLS. But that would only help prove their point, that we are somehow demented, untrustworthy and probably stupid to boot. I know the Foundation has had very eminent people respond to many of these idiots and in a way that reflects badly on the report or reporter. That doesn't mean we can't respond ourselves, especially if it is in a local newspaper, tv station, etc. We just have to come out with facts and all the info we KNOW about RLS in a professional manner. Why we should have to PROVE ourselves is beyond me and why they have picked out RLS to attack makes little sense. There are always new meds being advertised for all kinds of non-fatal diseases yet none of them take the beating we do. How long did we hear/read about the little purple pill before we even new what it was for? What about all the ads for depression medication? No one attackes them. Maybe because these reporters actually suffer from these disorders and take the meds. I think they just got a response from the first article and now it's become an issue that they can get air/tv/newspaper time for. Whether RLS is a real condition or not is not important to them. I think tat should be called media-mongering. Okay, I've ranted enough. Sorry!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Brandy, you are right in there with us all the way. Don't ever put yourself down because you have just as much spark as anyone. This disease-mongering just gets to me. This board, the Foundation and all of you are so very important to me. RLS will probably not be cured in our life-time but I'm gonna keep my mouth and body going as long as possible so no one forgets we are out here. Anyone wants to tag along, that is just great! We need every voice, no matter who you are to "getter done!"
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
Amen Sister! I'm with Ruby, it may not be what everyone does to help the cause. And our cause is a great one. Our voices can be used in many ways.
Not that I am a drama Queen, (however, a Queen of any kind wears a tiara.....! HMMM) but I have never minded talking in front of 2, 5, 100 people, let me like what I'm selling: let me know who I am selling to, and I'll whammo I can give it a worthy try.
Brandy or any one for the fact, you may shine in another area. Maybe one of you would be awesome at teaching local area schools, medical Assc.s, churches (?), whats a message when you got a crowd or someone willing to learn and help? Maybe your a great letter writer? (WAM) You could just get the media interested and find a group leader near you. A newspaper story would be great with 2 or more RLSers in your area. The group leadre should be happy to assit you with educational material and possibly some others in your area?
Maybe your cut out for a group leader.
Getting the drift, I might be after all this typing.........LOL
Be you and catch the common goal for us a community. And I refer to us as a community alot, cause we are the ones that will make it one, maybe 2-3 steps better for those that come behind us.
The common goal! In my eyes, is treatment and education first. For us all, not just those that fit into a perfect box, not the center, not the corner, an edge maybe.
Research and legal statis as a disorder to be researched and the funds to do it. Private, grants, donation by larger compaines, A known Face from someone that could get the attention and bring forth a better education of the, ok, well, mostly people that listen to music, watch TV, or read a magazine, newspaper, whatever.
A CURE.
We all can help, just be honest and do what feels best and right for you. And never stop daring yourself to dream and name it a goal. The small are no just filler, the are the glue that keeps us going farther.
I'll step down now and shut up. Til tomorrow, LOL
Love you each and everyone, just the way you ARE.
Lynne
Not that I am a drama Queen, (however, a Queen of any kind wears a tiara.....! HMMM) but I have never minded talking in front of 2, 5, 100 people, let me like what I'm selling: let me know who I am selling to, and I'll whammo I can give it a worthy try.
Brandy or any one for the fact, you may shine in another area. Maybe one of you would be awesome at teaching local area schools, medical Assc.s, churches (?), whats a message when you got a crowd or someone willing to learn and help? Maybe your a great letter writer? (WAM) You could just get the media interested and find a group leader near you. A newspaper story would be great with 2 or more RLSers in your area. The group leadre should be happy to assit you with educational material and possibly some others in your area?
Maybe your cut out for a group leader.
Getting the drift, I might be after all this typing.........LOL
Be you and catch the common goal for us a community. And I refer to us as a community alot, cause we are the ones that will make it one, maybe 2-3 steps better for those that come behind us.
The common goal! In my eyes, is treatment and education first. For us all, not just those that fit into a perfect box, not the center, not the corner, an edge maybe.
Research and legal statis as a disorder to be researched and the funds to do it. Private, grants, donation by larger compaines, A known Face from someone that could get the attention and bring forth a better education of the, ok, well, mostly people that listen to music, watch TV, or read a magazine, newspaper, whatever.
A CURE.
We all can help, just be honest and do what feels best and right for you. And never stop daring yourself to dream and name it a goal. The small are no just filler, the are the glue that keeps us going farther.
I'll step down now and shut up. Til tomorrow, LOL
Love you each and everyone, just the way you ARE.
Lynne
Hos, this is another one of your great threads! I don't know how you come up with these great threads, but please keep up the good work, ok?
I am with you all girls! We have to watch with we say, but we should try to fix the mistakes the media makes if we can. Like Becat, I am not afraid to speak my mind, esp when it is about something I am this passionate about. If we don't try to get the truth out there, who will? So, you can count me in!
Love you guys!
I am with you all girls! We have to watch with we say, but we should try to fix the mistakes the media makes if we can. Like Becat, I am not afraid to speak my mind, esp when it is about something I am this passionate about. If we don't try to get the truth out there, who will? So, you can count me in!
Love you guys!
Rebecca
Here's a good article I think. It was in the San Antonio paper right after the conference. Any kudo's the writer's way would be nice. From my limited experience doing some PR, if people email the writers about how the article was thorough and even gave links then maybe they would be empowered to do another follow up article.
Link >>> to article <<<
Writer: Cindy Tumiel
Her email: ctumiel@express-news.net
_______________________________________________________
This one isn't good...
>>> LINK<<<
The Wall Street Journal reported (in my opinion) a biased article which has now been copied by other newspapers and blogs. The following is one excerpt:
Here is Wall Street Journal's email to tactfully respond to this story which was reported on 10/26/06:
newseditors@wsj.com
So, basically the big bad drug company Glasxo is somehow wrong to market this Parkinson's drug to treat RLS. Requip is PROVEN to be effective with for RLS sufferers so I fail to see the problem. Must a drug only serve one illness or else the drug company gets demonized for discovering a new diagnosis (RLS) which can benefit from?
What seriously stinks is that I did a search on this article and it's being dittoed all over the place.
As my first post mentioned, I agree with everyone that tactful education with facts is the key in responding and good results usually follow. Respect towards generally brings back a respectful response.
Link >>> to article <<<
Writer: Cindy Tumiel
Her email: ctumiel@express-news.net
_______________________________________________________
This one isn't good...
>>> LINK<<<
The Wall Street Journal reported (in my opinion) a biased article which has now been copied by other newspapers and blogs. The following is one excerpt:
When drug giant GlaxoSmithKline PLC launched a new medicine for restless-legs syndrome last year, few people had heard of the affliction, and some physicians were skeptical that it even existed.
Today, the drug, Requip, is on track to post sales of $500 million this year, making it one of the fastest-growing drugs in Glaxo's portfolio.
Behind Requip's sales boom is Glaxo's marketing machine, which has persuaded many consumers and physicians to accept restless-legs syndrome, or RLS, as a real condition warranting treatment.
Here is Wall Street Journal's email to tactfully respond to this story which was reported on 10/26/06:
newseditors@wsj.com
So, basically the big bad drug company Glasxo is somehow wrong to market this Parkinson's drug to treat RLS. Requip is PROVEN to be effective with for RLS sufferers so I fail to see the problem. Must a drug only serve one illness or else the drug company gets demonized for discovering a new diagnosis (RLS) which can benefit from?
What seriously stinks is that I did a search on this article and it's being dittoed all over the place.
As my first post mentioned, I agree with everyone that tactful education with facts is the key in responding and good results usually follow. Respect towards generally brings back a respectful response.