Take action
Take the time to talk back
We need your help! With the approval of two medications for the treatment of RLS, the condition we once referred to as "the most common disease you have never heard of" is now a household name. Articles on RLS are in magazines, newspapers, on TV, and on the web.
However, while most of the press on RLS is positive, there are many occasions when the media presents inaccurate information. While we, as a Foundation, respond to that negative press on a case-by-case basis, in all actuality, it is YOU, the CONSUMER who can really make a difference and stop this negative press.
This page on our website was designed for one purpose – to make our visitors aware of inaccuracies in the media’s portrayal of RLS. Check back often! Take the time to review the information, and if it is necessary, contact the organization responsible. It is only through being proactive, that we can make sure people have their facts straight about RLS.
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CALL TO ACTION -- WILL YOU JOIN THE LETTER WRITING CAMPAIGN?
On February 17, 2010 the Food and Drug Administration (FDA) failed to approve a new medication for the treatment of moderate to severe restless legs syndrome. The reason given was the identification of pancreatic acinar cell tumors in male rats when given 10 times the maximum level for humans. This risk is also present in gabapentin (Neurontin), which has been on the market for 15 years and is used in off-label treatment for RLS as well as for neuropathic pain. The history of gabapentin treatment has shown no evidence of acinar tumors in humans. In fact, gabapentin is generally seen as a safe and effective treatment option for RLS when the symptoms are described as painful. Gabapentin was approved by the FDA for the treatment of partial seizures and for post herpetic neuralgia (shingles). The response letter sent to GSK and XenoPort stated that the risk of acinar cancer outweighed the benefit of treatment because RLS is not a “life threatening condition”.
The RLS Foundation contacted the Office of Special Health Issues at the FDA in early April 2010 to request a meeting with staff.
Activate the RLS Community
The real power of the RLS Foundation rests in you, the 12 million individuals with RLS whom we represent. A letter-writing campaign to the FDA stating individuals’ experiences with the impact of RLS will show -- more clearly than any testimony the Foundation leadership can give -- that RLS is a serious neurological condition that is poorly understood, still not adequately treated, and, as a life-long chronic condition, deserves the attention of the FDA in the consideration of new treatment options.
We invite you to be part of the RLS community response to the Food and Drug Administration. The best way to make your voice heard is as follows:
• Who: The most effective stories will be from individuals with severe RLS symptoms and/or those individuals who have not had effective RLS symptom control with Requip or Mirapex.
• What: Compose a 1-2 page letter concisely telling your story and sharing your concerns that the FDA needs to better understand the struggles of living with RLS.
• When: We hope to meet with FDA officials in the next 3-4 weeks. Our visit would be more powerful if thousands of RLS stories had already been shared with FDA decision makers.
• Where: Address your letter to Dr. Russell Katz, Director of the Division of Neurology Products and send a copy to his supervisor Dr. Robert Temple, Director of the Office of Drug Evaluation I. Addresses are below.
Dr. Russell Katz, Director
Division of Neurology Products
Office of Drug Evaluation I
Food and Drug Administration
Bldg WO 22 Room: 4271
10903 New Hampshire Ave.
Silver Spring, MD 20993
Dr. Robert Temple, Director
Office of Drug Evaluation I
Food and Drug Administration
Bldg WO 22 Room: 4271
10903 New Hampshire Ave.
Silver Spring, MD 20993
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TAKE ACTION Ann Coulter belittled restless legs syndrome on The O'Reilly Factor
No matter which side you endorse in the healthcare debate, we can all agree that belittling restless legs syndrome is not acceptable. See a video of Ann Coulter doing just that on the December 28, 2009 episode of the O’Reilly Factor. (RLS is mentioned around 4 minutes into this clip.)
Contact The O'Reilly Factor to tell them your thoughts by emailing oreilly@foxnews.com or by calling "The Radio Factor" live on the air at 1-877-966-7746 weekdays from noon to 2 pm Eastern.
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Rep. Henry Waxman (D-CA) made a joke about restless legs syndrome on C-SPAN's "Washington Journal"
On Monday, July 6, 2009 Rep. Henry Waxman not only joked about RLS, but laughed at a man who called in to educate him about it. See the video here. Please consider writing Waxman yourself and telling him that RLS is no laughing matter.
Response received from Rep. Waxman! Thanks to everyone in the RLS Community who took the time to respond to this incident. Read apology here.
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BBC is claiming RLS is an "imaginary" disorder
On Monday, March 30, 2009 Alasdair Cross (Producer, Medicalisation of Normality for BBC News) wrote an article entitled, Life: A medical condition. In this online article, he opens with, “Restless leg syndrome, social anxiety disorder, female sexual dysfunction, celebrity worship syndrome - it seems that a new illness is invented every week, covering every potential quirk in human behaviour.” Read this for yourself by clicking here. We encourage you to email the station with your dissaproval of these comments! You can do so by clicking here and supplying negative feedback to BBC.
Response received from BBC. Read the response from the author to the RLS Foundation here.
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Gary Greenburg claims RLS is a "made up" disease
While on KGO AM 810, Gary Greenburg, promoting his new book: The Noble Lie: When Scientists Give the Right
Answers for the Wrong Reasons, makes the claim that RLS was invented by pharmaceutical companies to sell a drug. Listen for yourself by clicking here. We encourage you to email the station with your dissaproval of this comment. You can do so by clicking here. You can also email Gary Greenburg directly at: ggreenberg@msn.com.
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Boston Legal episode uses RLS as an example of "made up" diseases.
In the episode, Alan Shore, delivers a speech which includes the following statement:
"They've been caught buying clinical trials, bribing doctors, distorting science . . . many of these so-called peer-review articles we see in medical journals are actually ghost-written by drug companies themselves and doctors take payofs and let their names appear as authors. The fact is, the US pharmaceutical industry spends almost twice as much on promotion as it does on research and development. American television viewers spend as much as 16 hours of prescription drug advertising each year. They invent diseases . . . be it restless legs syndrome, dry eye, unspecified sleep disorders . . ."
The RLS Foundation has heard from many of our members, outraged at this statement. Many of you are interested in boycotting this show. We encourage you to contact ABC and make your feelings known. You can do that by clicking here. As always, we believe it is you, the consumer, who can truly make your voice heard.
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"Restless Legs and Other Quirks" in the June 15th issue of the Monadnock Ledger Transcript.
Author Joann Duncanson lumps RLS into "just another syndrome" in this attempt at satire. You can comment about the article by sending an email to: news@ledgertranscript.com. However, before you send that email make sure you read Joann's retraction. Your words make a difference. Read Joann's apology for this piece by clicking here. We encourage you instead to send an email thanking her for taking the time to correct her words.
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Jim Carrey mocks restless legs syndrome
At a recent rally for autism, Jim Carrey attempted to mock the drug companies and decided to use RLS as his soap box. You can see the video here. The comment comes about 4:12 into the video. We are in no way commenting on the rally, but are upset that a popular actor like Jim Carrey would mock our cause while supporting his own. We are currently attempting to find a place where our members can voice their concerns with Jim Carrey's comment.
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LIVE JOURNAL
Another site making erroneous statements about RLS is featured here. In order to respond, you would need to create a user identity on the website. The site reads:
This is how we get Road Rage Disorder, Restless Legs Syndrome (an extremely rare condition that drug companies are now trying to push onto half the population) and even the idea that menstruation is now a "disorder" that can be treated with drugs to stop a woman's natural cycles from being expressed.
In fact, the highest number ever used for percentage of sufferers is 10%. If you go with the lowest number reported, 3%, this is 9 million individuals, as many people as those who live with Alzheimer’s.
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CORDELE DISPATCH
Tired of people trying to be funny by making fun of restless legs syndrome. The Cordele Dispatch recently featured the column, entitled: "Coping with Various Syndromes" which featured an attempted bit of comedy at the expense of people with RLS. Take the time to view this piece, and respond to the newspaper with your opinions at: southga.online@gaflnews.com.
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SPECIAL ALERT!!!
November 13, 2007
Consumer Reports
A video on consumerreports.org promises "relief from restless legs hype". The RLS Foundation is taking a tough stand against this type of bad press for RLS. Click here to watch this extremely sarcastic and insulting video for yourself. Then, click here to read the RLS Foundation's response to this video.
The RLS Foundation is calling for drastic measures to respond to this video. We aren't concerned that they are reporting on a drug. We are concerned that they are mocking a condition that so many people live with everyday. We encourage you to respond to this advertisement immediately. If you are a subscriber, we encourage you to cancel your subscription. If you are not a subscriber, we encourage you to tell them why you will not consider subscribing.
You can respond by email: healthblog@cro.consumer.org. (We have received reports that this email is no longer working -- most likely due to the number of emails our members have been sending.) To send their MAIN page an email click here.
If you are not a subscriber but want to voice your concern, you can call: 1-866-208-9427.
If you are a subscriber and wish to cancel your subscription, you can do so at: 1-800-879-9848.
If you have any questions, do not hesitate to contact the RLS Foundation directly for guidance: rlsfoundation@rls.org.
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WRAL.COM
Do you live near Raleigh, Fresno, or Fayettville, North Carolina? Spend some time reading the article on their website which reiterates what Consumer Reports published about RLS. Fallacies with this article include the face that the article claims:
- The article says that fewer than 3% of adults have the condition. The RLS Foundation does not support this number and research does not support this number. Research indicates that approximately 3% of people have moderate-to-severe RLS. 8-10% of the U.S. population has RLS. In addition, even if this 3% number was incorrect, that is still approximately 9 million people.
- The article says that RLS may be related to low blood iron, pregnancy, caffeine, alcohol, tobacco, or cold remedies. Pregnancy and an iron deficiency can be a cause of RLS. This information is correct. However, there is no research to indicate that caffeine, alcohol, tobacco, or cold remedies can cause RLS. There have been some reports that these medications can exacerbate RLS; however, there isn't research to indicate that they cause RLS.
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ABC.30
Do you live near Fresno, California? Spend some time reading the article on their website which reiterates what Consumer Reports published about RLS. Fallacies with this article include the face that the article claims:
- The article says that fewer than 3% of adults have the condition. The RLS Foundation does not support this number and research does not support this number. Research indicates that approximately 3% of people have moderate-to-severe RLS. 8-10% of the U.S. population has RLS. In addition, even if this 3% number was incorrect, that is still approximately 9 million people.
- The article says that RLS may be related to low blood iron, pregnancy, caffeine, alcohol, tobacco, or cold remedies. Pregnancy and an iron deficiency can be a cause of RLS. This information is correct. However, there is no research to indicate that caffeine, alcohol, tobacco, or cold remedies can cause RLS. There have been some reports that these medications can exacerbate RLS; however, there isn't research to indicate that they cause RLS.
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KATU.COM
Do you live near Porland, Oregon? Spend some time reading the article on their website which reiterates what Consumer Reports published about RLS. Fallacies with this article include the face that the article claims:
- The article says that fewer than 3% of adults have the condition. The RLS Foundation does not support this number and research does not support this number. Research indicates that approximately 3% of people have moderate-to-severe RLS. 8-10% of the U.S. population has RLS. In addition, even if this 3% number was incorrect, that is still approximately 9 million people.
- The article says that RLS may be related to low blood iron, pregnancy, caffeine, alcohol, tobacco, or cold remedies. Pregnancy and an iron deficiency can be a cause of RLS. This information is correct. However, there is no research to indicate that caffeine, alcohol, tobacco, or cold remedies can cause RLS. There have been some reports that these medications can exacerbate RLS; however, there isn't research to indicate that they cause RLS.
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When Restless Legs Syndrome if Better than the Alternative
Chances are you will disagree with this online writer's perspective that the side effects of RLS medications are worse than living with RLS. Take the time to respond with an online comment! You make a difference. Click the link above to read the author's apology for his offensive comments!
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Consumer Reports
If you receive Consumer Reports, take the time to check out the November 2007 issue. Page 12 features an article entitled: "Treatment Traps to Avoid". While the article is not about RLS, it features an ad for Requip, shown for the purpose of providing an example for how the pharamceutical companies project diseases onto the public. A few facts that were incorrect:
- The article says that fewer than 3% of adults have the condition. The RLS Foundation does not support this number and research does not support this number. Research indicates that approximately 3% of people have moderate-to-severe RLS. 8-10% of the U.S. population has RLS. In addition, even if this 3% number was incorrect, that is still approximately 9 million people.
- The article says that RLS may be related to low blood iron, pregnancy, caffeine, alcohol, tobacco, or cold remedies. Pregnancy and an iron deficiency can be a cause of RLS. This information is correct. However, there is no research to indicate that caffeine, alcohol, tobacco, or cold remedies can cause RLS. There have been some reports that these medications can exacerbate RLS; however, there isn't research to indicate that they cause RLS.
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Truth in Advertising? Many Causes for 'Restless Legs'
This media spot ran on ABC news after the Consumer Reports article ran. The spot was by Ric Romero. It ran on October 2, 2007 on KABC-TV in Los Angeles, CA.
Inaccuracies in the article include the following statements:
- RLS might be connected to everything from low iron in the blood to what you drink and eat. While there are studies on RLS and iron, there are no known studies showing a correlation between food and/or drink and RLS.
- REQUIP promises relief for something you probably weren't aware of until recently -- RLS. Most people with RLS will admit that they are very aware of RLS. This is an assumption that is not correct. For the 8-10% of the population who lives with this disorder, they are very aware of RLS.
- "This is a condition that affects -- at most -- three percent of adults," said Metcalf. "The commercials elevate it to something that seems much bigger." Actually, research indicates that approximately 3% of adults have moderate-to-severe RLS. Approximately 8-10% of adults have RLS. In addition, 3% of people is still over 3 million people. This is a fairly large number in and of itself.
- Dr. Nicholas Rummo treats people with sleep disorders. He says since the commercials started running, more people have come to him complaining of restless legs. But not all of them need a prescription. This is what the RLS Foundation has argued repeatedly. It is the physician who is in charge of giving out medications to patients.
- Interestingly, the commercials don't mention possible causes of restless legs, which include iron deficiency, caffeine, alcohol, tobacco, cold remedies, and even pregnancy. While there is research indicating that iron deficiency may cause RLS, this is not always something that can be fixed simply by taking a supplement as the article suggests. Pregnancy can be a cause of RLS. This information is correct. However, there is no research to indicate that caffeine, alcohol, tobacco, or cold remedies can cause RLS. There have been some reports that these medications can exacerbate RLS; however, they do not cause RLS.