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.
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wkitsteiner
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CONSUMER REPORTS BAD PRESS -- WE NEED YOUR HELP!

Postby wkitsteiner » Tue Nov 13, 2007 10:24 pm

Please take some time to visit this page on the Foundation's website:

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=471


Please forgive my adding this Miss Bell:

If you are not a subscriber but want to voice your concern, you can call Consumer Reports at: 1-866-208-9427.

If you are a subscriber and wish to cancel your subscription, you can do so at: 1-800-879-9848.



In response to this video and the bad press that ensured, the Foundation responded, and we are asking everyone to do the same.



November 13, 2007

Dear Mr. McKean,

On November 1, 2007, Consumer Reports ran an online spot entitled: “Finally, an antidote to TV drug ads.” Included with a letter from you, the Editorial Director, was a video clip of Jamie Hirsh breaking down an advertisement for Requip, a drug used to treat restless legs syndrome (RLS).

As Executive Director of the Restless Legs Syndrome Foundation, I am also a subscriber to your magazine. And as of last week, I was a subscriber who loved getting my copy of Consumer Reports each month. Unfortunately, after the display on your website, I am now a subscriber who will look elsewhere for my product information. I plan to cancel my subscription immediately.

As I watched this video you called “entertaining” and “fun,” I couldn’t think of two words that would describe what I watched any less. It would have been one thing if you presented information in a professional and appropriate manner, but instead, you poked fun at a condition that at least 3% of the U.S. population suffers from.

Recent studies have indicated that as many as 8-10% of the population suffers from RLS. But to ease our argument, let’s say that 3% of the population has RLS as you declare in this video. Three percent of the U.S. population is approximately nine million individuals.

Would you mock the symptoms of childhood asthma? According to the CDC, nine million children were diagnosed with asthma in the U.S. in 2004. Would you have ever made the statement: “While asthma is a real condition, only about 3% of children actually suffer from it.”
Is Alzheimer’s serious enough to warrant medication? Actually, there are nearly two times as many individuals with RLS as there are those with Alzheimer’s – if we use three percent as the number of choice.

Three percent is actually the entire population of the state of Georgia (or the population of Arkansas, Delaware, Idaho, Montano, North Dakota, Rhode Island, South Dakota, Vermont, and Wyoming combined.)

Eight million children are born with birth defects each year, and the March of Dimes finds this to be a large enough number to warrant concern. This number is less than that of individuals who suffer from RLS, a debilitating sleep disorder.

Is that enough people to permit a drug to be developed to help them?

Aside from the disregard for the nine million people in the U.S. living with RLS, the entire video was filled with poor attempts at humor and entertainment—attempts that I and the members who jammed my email inbox this week, found insulting. Here are just a few examples of the sarcastic tone used:
• “Oooh a mystery. Sounds serious. The real mystery? What the heck is restless legs syndrome anyway?”
The sensorimotor disorder RLS was described as early as the late 17th century by the great English anatomist and physician Sir Thomas Willis, who also described the opioid responsiveness of the syndrome. In the 1940s, Swedish neurologist Karl Ekbom wrote a series of detailed clinical descriptions of the disorder and coined the term restless legs syndrome. The American Sleep Disorders Association developed diagnostic criteria for RLS in the late 1970s. And in July of this year, researchers discovered the first gene variant for RLS.

• “Aaah, note the use of impressive initials. RLS sounds official doesn’t it?”
The initials RLS has been used in conjunction with restless legs syndrome for years. In our search, the earliest we could find record was 1984. However, this is still more than 20 years before any medication was approved for treating RLS. Ms. Hirsh discusses a Mayo Clinic study later in the video. This Mayo Clinic study uses the term RLS. I don’t think it was so that they could sound “official.”

• Geeez, the side effects are starting to sound worse than the symptoms.
I am curious as to whether the person who wrote this script has ever struggled with sleep. According to the National Sleep Foundation, the direct and indirect impact of daytime sleepiness and sleep disorders on the national economy is estimated to be about $100 billion annually. Even if it isn’t RLS keeping you awake, the inability to sleep has been linked to a myriad of health conditions including: psychiatric problems, stress, difficulty concentrating, depression, suicide, and more. Try not sleeping for one day, two days, or a week and see if possible side effects are worth the risk.

This is only a small sampling of the frustrations I felt while watching this piece.

Not only will I be cancelling my subscription, but the RLS Foundation plans to encourage all of its members to do the same both on our website, which receives more than 2,000 hits a day and in our quarterly patient publication and email list.

Talking badly about a drug is one thing. But talking badly about a disease is another. It is one thing to inform the population about a drug. It is another thing to make a mockery out of a disease that only 3% of the population suffers from.

Sincerely,



Georgianna Bell
Executive Director
RLS Foundation

ViewsAskew
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Postby ViewsAskew » Tue Nov 13, 2007 11:26 pm

Thank you so much for posting this letter. It is so clearly written.

I was actually hesitating canceling my subscription. But, this has helped me to rethink that decision and continue with the cancellation.
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.

KBear
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Re: CONSUMER REPORTS BAD PRESS -- WE NEED YOUR HELP!

Postby KBear » Tue Nov 13, 2007 11:56 pm

wkitsteiner wrote: Talking badly about a drug is one thing. But talking badly about a disease is another.


I think this statement sums things up quite well. I certainly wouldn't go out on limb to support any drug company or their commercials (I think the way the commercials portray RLS is part of the problem) but to make fun of the very real suffering that many people deal with on a daily basis is just ignorant and wrong.
Kathy

Link to the Mayo Clinic Algorithm:

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

becat
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Postby becat » Wed Nov 14, 2007 2:58 am

I beg ya'll follow the link that Wk left in her message and let's fight.

I asked for a project, boy did I get an answer.


This is for real, watch the video, slow dowload, and then write them, this is wrong, wrong , wrong.

If I find that reporter (ha) in an alley someday............uffffffffffffaa

Lynne

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SquirmingSusan
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Postby SquirmingSusan » Wed Nov 14, 2007 4:28 am

This sounds like a golden opportunity to make one of those fists that Lynne has been talking about. :twisted:
Susan

mackjergens
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Postby mackjergens » Wed Nov 14, 2007 7:31 am

I continue to get a Error when clicking on the listed link. I would love to have the email addy for this person, so I can send my response!
Thanks

ViewsAskew
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Postby ViewsAskew » Wed Nov 14, 2007 9:50 am

Mack, this is the email addy: healthblog@cro.consumer.org

This is the link to the video: http://blogs.consumerreports.org/health ... index.html

Hope these help and are what you are looking for.
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.

Sojourner
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Postby Sojourner » Wed Nov 14, 2007 10:27 am

I have just finished sending off my reply.

I AM THROWING DOWN THE GAUNTLET AT THIS GROUP. I DON'T KNOW WHAT THE LONGEST THREAD IN THE HISORY OF THIS FORUM IS BUT MY CHALLENGE IS TO BEAT WHATEVER THAT NUMBER IS WITH THIS THREAD. I CHALLENGE EACH AND EVERY ONE OF OUR MEMBERS TO RESPOND TO THIS PIECE OF JOURNALISTIC TECHNO-TRASH BY SENDING AN E-MAIL, OR RESPONSE OF YOUR CHOSING, TO CR. I THEN WOULD LIKE YOU TO POST A SIMPLE MESSAGE SAYING YOU DID JUST THAT. LET'S SEE, PARTICULARLY GIVEN THE SOMEWHAT TENSE ATMOSPHERE HANGING AROUND HERE LATELY, LET'S PUT OUR MONEY WHERE OUR MOUTH IS AKA "JUST DO IT!"

Spread the word.

M.

I have created a Honor Roll of Responders to those who cantact CR. If you do not want your name placed on this list, please indicate that in your post confirming your reply to CR.

M.
Last edited by Sojourner on Wed Nov 14, 2007 9:19 pm, edited 5 times in total.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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lyndarae
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Postby lyndarae » Wed Nov 14, 2007 2:46 pm

comsider it done on this end GRRRRRRRRRRRRRR what a bleeping&^%^^*(&*%^()(^$%$*(&&%$%^)((*%$%^&*)^%^^(*&&^&* HOPE YOU ALL UNDERSTAND WHAT I THINK Lyndarae

slee
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Consumer Reports Bad Press

Postby slee » Wed Nov 14, 2007 4:41 pm

I sent a message as soon as I receive the message about the video. Unforutnately, my note was blocked by their spam blocker, so I will try again from home tonight. I was appalled by the "entertainment" video. It's hard enoough to convice people that are somewhat knowledgeable about RLS and to have someone make fun of it just makes me want to scream. I was so angry, I had strange dreams all night about being trapped in a building, wonder if it had anything to do with my anger about the video.

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lyndarae
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Postby lyndarae » Wed Nov 14, 2007 4:54 pm

JUST SENT MY REPLY

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lyndarae
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Postby lyndarae » Wed Nov 14, 2007 4:56 pm

mine was blocked as well what should we do now????

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lyndarae
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Postby lyndarae » Wed Nov 14, 2007 4:59 pm

Mark, Maybe if we start a thread of all our replies we can send the whole thread ??????? Just a thought I want them to hear us LOUD AND CLEAR

mackjergens
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Postby mackjergens » Wed Nov 14, 2007 5:48 pm

This was also sent to the message board at http://health.groups.yahoo.com/group/rlssupport/

So it could be that too many messages are being sent at once and they blocked all messages?

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wkitsteiner
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If that doesn't work ...

Postby wkitsteiner » Wed Nov 14, 2007 7:29 pm

I am thinking they may have shut this email down. We are receiving copies of replies like crazy.

If you can't get the email to go through there, try this:

http://custhelp.consumerreports.org/cgi ... er/ask.php


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