I’ve Been Banned from RLS.org For Good

ban-youre-banned1All this crazy talk about non medical cures for RLS has got me banned from RLS.org again. This time I suspect for good.

It really is a crime that an organization that gathers people together in a unified search for a solution, would ban someone that offers proof that there are solutions.

They are so tightly bound to the pharmaceutical industry, it’s frightening.

I realize that they’re no different than any other foundation, it’s just that I’m seeing one up close for the first time.

I’m mostly frustrated because they’re misleading thousands of people, saying that their only chance at relief is through medication.

These are people that trust that they are being told the truth, and they’re not.

They’re being horribly misled.

 

 

15 Comments »

  1. Keep doing what you are doing!

  2. Paul said

    You must be onto something to make the powers at be nervous.

  3. KarenLA said

    What an absolute shame. It’s disgusting and hypocritical of these organizations. Keep up the fight, a lot of people are crossing over to the alternative side because of people like you, who keep exposing these orgs for what they are.

    • rlsottawa said

      Hi Karen I really appreciate your comment. It means everything to me! It’s comments like yours that inspire me to keep going despite the intense resistance. It also helps me to remember that there are a lot of RLS sufferers out there that are simply looking for information in order to weigh all their options.

  4. sally said

    After years of searching you are the only person I have found offering a non-med. solution, and for free!
    You have given me hope where as doctors have only frightened me and pushed prescriptions…keep up the good fight and thank you!

    • rlsottawa said

      Hi Sally

      I really appreciate that. It means everything to me!

  5. KarenLA said

    Do you have your own website or facebook? You could easily attract thousands with a name such as Alternative Cures for Rest less legs…or something…With that, you could use as a spring board to promote a book…then speaking engagements, reaching even more people….Mary Shoemain…not correct spelling…did that with her problems with her thyroid and docs dismissing her. She had no medical background, just a drive to expose thyroid problems and the medical establishment. So, take your passion, help people, make some money and become a force to be reckoned with. You could easily become the rls org’s worst nightmare.

    • rlsottawa said

      Hi Karen

      I’ve been doing my best for the last 4 years trying to get the word out. I really need to partner with a doctor that believes in natural remedies. I found one in Pennsylvania, but he’s not getting back to me. He actually first got in touch with me. He has a 80% – 90% success rate in treating RLS over the last 30 years. Without a doctor supporting my claims, I have no credibility at all. People just ignore the study by Dr. Weinstock, pass it off as a theory. He wrote a quote for my main page. The problem is, even though his study points to inflammation as the problem, he’s tied in with the drug companies, so he’s never going to recommend a natural remedy.

      I do have a website, and several other social media pages (below). Any help you can give would be greatly appreciated!

      Main website: http://www.rlcure.com
      Facebook: https://www.facebook.com/AbsoluteCureForRLS?sk=wall
      Google+: https://plus.google.com/111517705116717316046/posts
      Pintrest: http://www.pinterest.com/davidwimble5/restless-legs-syndrome-natural-remedies/
      Twotter: https://twitter.com/RLS_FREE

      • KarenLA said

        You need a facebook where people can vent and add their 2 cents. There are a lot of upset people. You don’t need a doctor…yet…If inflammation is a key, quickly look up Women’s Non Gluten summit, which is ending today. There are many speakers you may be able to tap into because they feel inflammation is the cause for almost everything. You may find these people have cured restless legs and thus find a partner or more.

      • KarenLA said

        Here is another free summit going on called Sexy, Young You. support@sexyyoungeryou.com 25 speakers, many mds, talking about alternative cures…We’re talking MS…having to do with inflammation. So, there are many potential people to hook up with. Seeing how many people suffer from restless legs, there should be interest. You can even follow them and ask questions.

        • rlsottawa said

          This is great. I’ll definitely get in touch with them. If you ever run across something else that would help, please e-mail me at dwimble@magma.ca Thanks for your help!

  6. Donna said

    I am not a fan at ALL of the RLS.org, BUT you need to update your information a bit on them, they are putting more emphasis now on alternative treatments then they did before and are probably realizing now that the entire board has quit or just plain left (including the director) because their “standards” were so rigid, for lack of better word. There is whole new board of directors, and volunteers. They have turned into a “donation” web site, which drives me NUTS. Can’t even stand to go on their FB page any more. If I EVER had any respect for them, that miniscule amount is GONE. Still not saying I agree with all of your stuff either, but I do not now, nor have I for over a decade, had a thing to do with the US RLS Foundation ( i refuse to use Willis Ekbom Disease for the name). Their legal name is still RLS Foundation, “dba” as Willis Ekbom Disease Foundation WED……try googling WED, you will get NOTHING RLS related, only wedding planners and wedding magazines LOL). They are NOT the ones who are going to help us in the end, that much is true. Several doctors have defected also, so there is that hope that their reputation is sinking like I knew it would. Ever go on one of those charity ratings sites? They have 2.5 out of 4 stars because of lack of transparency when it comes to the IRS and other financial reporting. I have had a feud with them for years, and do not see that changing at all, ever. Most of us who have RLS, have figured out the foundation is not a support group for us, and they certainly do NOT support long time volunteers like 2 ladies I know that volunteered for them for 17/18 yrs, and they wer both treated so badly, it would make your head spin. and, there is a new, very scary director who has an issue with support groups sharing the information on thier web site, and are very nasty about it. the “mission statement” does not include the word support, and that fact stads out rather obviously. hat good id it to have all that info on their web site, well THEIR information, and not allow us to share it after all these years?! nasty letters abounded for a while. So, I NEVER send anyone to their site of FB age any more, not that I did it very often before the support groups fiasco. We were trying to get info for some pregnant women and people with kids who have RLS, and the ADMINS of that group were told nothing from their web site could be posted, none of the images, etc. So, watch yourself, as to what you post here. the admins of the other group that got in “trouble” were threatened with legal action, etc. NO, not kidding!

    • rlsottawa said

      I’m glad to hear they’re self-destructing. That community board does more damage than good. Their moderators are pretty set in their ways and all glimpses of hope are snuffed out immediately. It would be nice if they continued to loosen up a bit. However, they’re still all about the money, and in order to survive as a business, they need to keep their focus on a pharmaceutical solution – and the idea that it is just over the horizon.

    • KarenLA said

      They are no different than most of the disease charities, which don’t want to find a cure and put themselves out of business. Also, they are underwritten and dominated by Big Pharma, which doesn’t want to hear about alternative, natural cures … no money in it.

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