CONSUMER REPORTS BAD PRESS -- WE NEED YOUR HELP!

Anything on your mind that isn't about WED/RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
mackjergens
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Postby mackjergens » Thu Nov 15, 2007 1:59 am

I also sent a message but it came back. How many of you have had your message returned?

ViewsAskew
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Postby ViewsAskew » Thu Nov 15, 2007 2:45 am

I sent it in early on - it didn't come back, so I am assuming it got through. Has anyone tried the other link Wendi listed? (The one on the customer service site)
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.

red56
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Postby red56 » Thu Nov 15, 2007 3:33 pm

My message was returned - I sent it yesterday afternoon.

KBear
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Postby KBear » Thu Nov 15, 2007 4:34 pm

Mark wrote:KB, :lol: May I add your name to the Honor ROLL ??


Yes you may!

Susan, I sort of said the same thing you said only you said it a whole lot better. :wink:

I used the customer service link and it worked fine. They require that you enter your email adddress I'll let you all know if I get a response. Even if it's just a "thank you for your feedback" form letter it would be nice to know that they actually received it.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

Polar Bear
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Postby Polar Bear » Thu Nov 15, 2007 4:57 pm

My message didn't come back.
Betty

becat
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Postby becat » Fri Nov 16, 2007 3:00 pm

if your email came back try again.

And I posted phone numbers to use at C repots as well.

I think, if you call you her on the honor roll. Maybe Mark will give thsoe that cancel thier sundcription a spcual notation? Hmmmmmmmmmmm

LOL

Lynne

doety
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Postby doety » Sat Nov 17, 2007 4:50 pm

I sent my response immediately. I agree that I hate those drug ads, but I don't know how anyone can say this didn't have a mocking tone. I loved the letter from the director -- she said it beautifully.
Most of us have been around for a while; we struggle a lot but at least we have each other and we swap tips and hopes.
Don't you remember the first time you heard the words "restless legs syndrome" and realized that you weren't crazy and that lots of other people were suffering too? I remember exactly where I was, because it was so important to me.
It's debilitating, we all know that. It's made me feel like my life was over. I felt like kissing the ground in front of some pharmaceutical company when I found out they were finally developing some drugs for us (or at least making them legit). Yes, they're out to make a profit.
But because I've often thought I was crazy and was so embarassed when I had this in public (a movie, etc.), it really is discouraging to see an ad like this.
Yes I'm a subscriber to CR and I will cancel it. Feel like it's set us back.

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sardsy75
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Postby sardsy75 » Sat Nov 17, 2007 5:13 pm

Hey all

Have only just caught up with this thread. It's 3:00am (I REALLY hate rapid weather changes!!!) and after reading through the comments, i'm hangin out to watch this lil bit of footage; alas it will have to wait until later as i dont think i'd be too popular in the house if i watched it then woke Troy up to have a good rant and rave ... particularly since he's planning on getting up at the crack of dawn to take his dad fishing ...

So ... I will wait until all is quiet (the girls are away for their weekend with mum ... ) later today and have a gander and i promise to post again, and more than likely with the intention of making a time to meet up with becat and lyndarae in that alley ...

(not sure how we'd co-ordinate that alley from such a distance ... but hey ... when i'm grumpy ... :evil: )

Until then ...
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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jan3213
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Postby jan3213 » Sat Nov 17, 2007 6:25 pm

Great job, everyone! I'm right there with you all. After hearing comedians make fun of RLS, "news" commentators (Rush Limbaugh) and now this, I'm livid. As I've said before, I wouldn't wish RLS on my worst enemy, but maybe if one of these people spent even a half hour in our skin, especially on a bad night (or day), they'd realize what a terrible thing we all live with.

I'm not fond of the commercials, either. To me, they say RLS is a small inconvenience and if you just take a pill, it will all go away. We all know that medication wears off and all kinds of outside things can effect RLS rendering meds somewhat useless occasionally. However, as someone said (I think it was Susan), the pharma ads have really brought RLS to the forefront. A lot more people recognize it as a problem.

I don't subscribe to CR, but I will write to them and give them a piece of my mind.

Jan
No one is alone who had friends.

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ctravel12
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cosumer reports bad press--we need your help

Postby ctravel12 » Sat Nov 17, 2007 9:57 pm

I called consumer reports and told them how unhappy I was about the video clip Jamie Hirsch did on the requip for rls. I told them that if I was subscribing to this magazine I would cancel immediately. She informed me she will notify the Main Office about this. Whether they do this or not that remains to be seen; however we are letting our voices be heard.

Let them walk in our shoes one day, week, month or ever how long and see how quickly they would change their tune.

PS Mark add me to the honor roll too.
Last edited by ctravel12 on Sun Nov 18, 2007 4:03 pm, edited 1 time in total.
Charlene
Taking one day at a time

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sardsy75
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Postby sardsy75 » Sun Nov 18, 2007 2:52 am

One word really ... Disgusted!!!

You can add my name to that list Mark. I've said my bit ... as politely as possible after what can only be described as a horrid night and morning trying to get legs (but when you think about it ... its really our brain!) back under control ... and then get a bit of sleep.

'Nuff Said
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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jen13
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Postby jen13 » Sun Nov 18, 2007 4:42 am

Howdy, Mark
PLEASE add me to your Honor Roll. As you know, I just recently started a new job and I've been working REALLY long hours (Monday thru Friday only, thank goodness). I haven't visited the boards as frequently because of that. It's currently 11:30 pm my time and as sleepy as I am right now (I took my meds a little while ago), I couldn't let the evening end with out logging on to check things out. And what do I find...this junk from Consumer Reports! I'll tell you this...I woke up long enough to BLAST CR with my opinion on the whole thing! I agree that we're inundated with drug ads, but their approach was all wrong in my opinion.

So please add my name to your Honor Roll, thanks as always for your contributions to these boards, and hope to chat with you on Monday!

Hope all is going well with you and everyone else who visits this site.
Take care and talk to you soon!
Jen

KBear
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Postby KBear » Mon Nov 19, 2007 4:15 pm

doety wrote: I agree that I hate those drug ads, but I don't know how anyone can say this didn't have a mocking tone.


Oh yes there is definately a mocking tone however I think it was their intention to mock the Advertisement not people with RLS. Unfortunately the poor execution of the message made that subtle distinction rather ambiguous. In simpler terms, it was hard to tell what she was mocking.
Kathy



Link to the Mayo Clinic Algorithm:



http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

slee
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Consumer Reports

Postby slee » Mon Nov 19, 2007 4:44 pm

I may have posted this twice, I'm not sure what I did to the first message, but here it is again. I RECEIVED A RESPONSE!!! Not one that made me happy and I plan on sending back a response. Here is the message I recevied:


Thank you for contacting us to share your feelings regarding the Consumer
Reports AdWatch video on Requip. We take the comments that we receive
quite seriously as we allow them to shape all of the work that we do.

First, while we appreciate the points you make, we believe that the video
clearly does not make light of RLS or at anyone who suffers from the
problem. As the video and accompanying introduction both note, RLS is a
real condition that afflicts some 3% of Americans. We have great sympathy
for all who suffer from this syndrome and other chronic diseases, and agree
that many people get relief from prescription drugs.

The point of the video has to do instead with the marketing of this
product, and of the disease. We feel, and say in the video, that the ad's
description of RLS is so vague that almost anyone might come away wondering
whether they have it. We feel that the drug's side effects include some
that can in fact be troubling. And we try to point out how the ad, in our
opinion, manages to downplay these problems through the use of a gentle
soundtrack and relaxing imagery while listing them.

We also feel that by focusing solely on a pharmaceutical remedy, the ad
overlooks various non-medicinal treatments that are probably worth
considering in evaluating a proper therapy.

All of the above are important points, and we think they come through
plainly to viewers - an impression that is backed up by the many favorable
comments about the video that have appeared on our weblog and on others
that follow this industry.
We don't hope to change your mind about this point, but we do want to make
clear that projects like AdWatch are part of the mission of an independent,
non-ad-supported, consumer organization like Consumers Union, the publisher
of Consumer Reports. Direct-to-consumer (DTC) drug ads have become
increasingly common on TV, in magazines and newspapers, and on the Web. It
is the responsibility of groups like Consumers Union to provide
counter-perspective where we believe it could be valuable, and this is one
of those instances.

Thanks again for taking the time to write. Your interest in our work is
greatly appreciated.

Sincerely,

Patrick Burns
Customer Relations Representative
1066798


I plan on asking him what various non-medicianl treatments they found to work for RLS that they are suggesting. I also plan on mentioning while they say that they believe it is a real condition, the tone of the video seems to mock the illness not the drug. They said that they received very positive comments on the video, but wouldn't it be interesting to find out how many suffer from RLS?

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SquirmingSusan
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Postby SquirmingSusan » Mon Nov 19, 2007 7:03 pm

All of the above are important points, and we think they come through
plainly to viewers - an impression that is backed up by the many favorable
comments about the video that have appeared on our weblog and on others
that follow this industry.


This guy has his head planted firmly in the sand. The feedback on the weblog is overwhelmingly negative, and most people have commented that they think the ad mocks RLS, not to mention that the reporter is way too sarcastic. Where is he reading all these favorable comments?

Grrrr
Susan


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