CONSUMER REPORTS BAD PRESS -- WE NEED YOUR HELP!

[Polar Bear]

Just sent my email re the video protesting about making 'light' of our condition!!!

[wkitsteiner]

I am working on compiling all of the responses we are getting regarding this topic.

I would love a copy of anything you send to CR.

You can send it to me directly at kitsteiner@rls.org

[slee]

Just sent my e-mail to the new address provided. It will be interesting to see if my note goes through.

[becat]

I sent my reply to them last night.


Mark, can we have an honor roll if we write to them. It's fun that way too!
Just something from the past that came to mind.

Mark you can edit your post and add names of those that are helping us jam their email boxes and making our fist bigger, our voices heard louder together.

Yeah a family project. And may God Bless us they get educated before they do this type of false hype to ua or anyone one else.

Yahoo!

Lynne

[Sojourner]

L, Good idea. List is updated as of this post. Both, you and Ann feel free to update it as you see fit. Actually, I decided to do a Honor Roll of Responders as a seperate thread. That way if people want to make comments etc. they can do so here. I will try to keep the othere thread pure with names only. I have locked the thread. If anyone's name gets on the list unintentionally please pm me and I will delete it. Thanks

M.

[KBear]

OK, I just watched the video and read the text of article that accompanies it and I have to say that I wasn't offended by it at all. They are polking fun at the "drug ad" not at the disease. The point of this article is that drug ads make people think they need drugs that may not be the best choice for their condition and that the ads themselves make light of serious conditions.

Sorry gang but I'm not willing to jump on this band wagon and I don't have a subscription to Consumer Reports so I can't cancel them anyway.

[Sojourner]

KB, Understand your point entirely and I think that was somewhat of my first reaction. Although, even then, I thought the piece, particularly the video, was more entertaining than informational and something you might see on Saturday Night Live. Having said that, I agree with you that ad/drug education was indeed the intended message. However, in the process, I believe "innocent bystanders," namely those of use with RLS and the condition itself were trivialized. Just an opinion I know. But, I bet if they did a similar piece about breast cancer with "breast cancer victims" as the "background images in the video" the public outcry would be deafening. Visualize that for a moment. I simply think we are not any less worthy. Best wishes.

M.

[ViewsAskew]

I also had that first reaction. Then I asked DH to watch it with me. He doesn't have RLS. His reaction was, "It was pretty funny, but it really made those with RLS seem stupid, especially if they took the drug."

My main beef with it is that it doesn't even use the correct percentage. It uses 3% - that's not total RLSers. That's those with severe RLS. My second beef is that is makes it sound like that is a small amount. It's not at all, and as Mark said, if it were some other disease, we wouldn't be laughing so hard.

Of course, just our take at this house.

[KBear]

I might have been more upset by it if I hadn't read the article first. I think the article puts the video into perspective. The video alone does come off as insensitive and I think you're right it could have been presented better.

So, you have changed my mind I am going to write to them and indicate that although I agree with the general theme (drug ads are bad) their presentation was insensitive to the many thousands of people who suffer from RLS.

They indicated that this will be an ongoing piece featuring different drug ads, it would be interesting to see which one they pick on next.

I'll bet the next one will be about erectile dysfunction ads.

[Sojourner]

KB, May I add your name to the Honor ROLL ??

M>

[SquirmingSusan]

OK, this is what I posted on the Consumer Reports website, under the video.

How can anyone say that this ad doesn't mock the condition, RLS, itself? The tone of voice of the reporter is much too sarcastic to think that she has any sympathy for RLS sufferers. And some of the facts are wrong, which indicates to me that she didn't make an honest attempt at understanding what she's talking about. Studies show that 8-10 percent of the population is affected by RLS, which is a huge percentage of the population. And 3% have moderate to severe RLS. In quality of life studies, RLS patients have been shown to have worse quality of life than people with diabetes. (http://www.springerlink.com/content/t16 ... 92ba1&pi=6) Would you have a reporter mocking diabetes as an annoying condition that could be helped by home remedies?

Yes, drug ads are annoying and inappropriate for television as far as I'm concerned. The RLS ads are no exception. The ads themselves make the disorder seems like a minor inconvenience that a glass of iced tea and a green chair can cure. But the ads have helped many people learn the name of the condition that has afflicted them mercilessly for years - since childhood - in many cases. And as a result doctors have had to learn a bit about the condition. And believe me on this - most doctors are woefully uneducated about RLS and should not be prescribing these medications without a better understanding of both the condition and some of the more severe side effects of those drugs, the ones not mentioned in the ads like augmentation which can involve leg pain and severe worsening of the RLS symptoms.

As for the 57% response to placebo in the drug studies? Many of us who have severe RLS have looked into volunteering for those studies, but it is almost impossible to get into them. Because to begin a study, we need to stop taking the medication that is necessary to our survival! There is no way that someone with severe RLS can go weeks without medication in order to participate in a study. So those that do participate must have milder forms of RLS.

I have no love of the constant barrage of pharmaceutical ads on television. But please do not pass on misinformation about a terrible health condition that affects a large percentage of the population. And I am grateful that the drug companies are taking this condition seriously, and that progress is being made in treating it. The drugs aren’t perfect and we have a long way to go but at least people are starting to take this seriously. I expect Consumer Reports to do the same.

[ctravel12]

Susan thank you for posting this. You did an excellent job and thank you again.

[lyndarae]

Susan, you have a way with your words and are very good at it, me on the other hand I just purge it out there from the heart and hope it comes out right, you dont even want to know waht I said in a (nice) way, but there will be no mistaking what I thought of their insulting video and little reporter girl, I also prayed for them that none of their children or family members have rls and maybe they should have thought about that before they started flapping their lips I am alot of things but a joke is not one of them when it comes to this disease and how it affects me and the people I love I will not just sit back and be abused....... get that enough from all the docs dont need it from some airheads sorry guys this has just made me so angry I am with becat I better not catch any of them in a dark alley~~~~~~~~Lyndarae

[SquirmingSusan]

Hey Lyndarae! It doesn't matter how you say it, it's important that you just SAY IT. Thank you, and everyone else on the board who has written, for writing and adding your own very important voice. They have to listen to us.

[ctravel12]

I sent my comments also. I feel it was definitely done in bad taste and have always said "until they walk in our shoes for a day, week, month" they have no idea what we are going through.

I am glad that we are giving our opinions as I know it will count.

Mark you can enter me in the honor roll if you want to.