I’ve Been Banned from RLS.uk and RLS.org

ImageI created a link to my most recent post about RLS being a symptom (and not a disease) on the discussion boards at RLS.uk and RLS.org.

RLS.org deleted the posting. RLS.uk removed the posting and banned me from their community.

This brings up an issue I have with the admins of these discussion boards. They are always very pro-med and not open in the least to any sort of natural remedy.

A few years ago, the admin of the RLS.or.au community board actually said that “Sifrol was God’s gift to humankind”. The sad part is, she wasn’t kidding. She actually felt that she had found her Nirvanna.

The sad irony is that she prevented me from posting on their website because I was promoting the benefits of natural RLS remedies.

ImageJust so you know, here’s a list of possible side-effects of the wonder-drug Sifrol (Pramipexole hydrochloride).

from MyDr

feeling sick (nausea)
    vomiting
    constipation
    diarrhoea
    dry mouth
    drowsiness
    tiredness
    confusion or hallucinations (seeing, feeling or hearing things that are not there)
    restlessness
    dizziness
    headache
    light-headedness on standing up, especially when getting up from a sitting or lying position (hypotension)
    blurred vision
    swelling of hands, ankles or feet (peripheral oedema)
    uncontrollable twitching, jerking or writhing movements (dyskinesia)
    difficulty sleeping or unusual dreams
    weight gain or loss
    loss or gain of sexual drive

Some of these side effects are more common at the start of treatment and lessen or disappear with time. Tell your doctor immediately if you or your family notice any of the following side effects:

    loss of memory (amnesia)
    fainting
    signs of allergy such as rash or hives on the skin; swelling of the face, lips, tongue or   other parts of the body; wheezing or difficulty breathing
    excessive sleepiness or sudden onset of sleep during normal daily activities
    compulsive behaviour such as gambling, hypersexuality, shopping, eating, medication use and repetitive purposeless activities
    mental illness causing severe suspiciousness (paranoia)
    shortness of breath or tightness in the chest (dyspnoea)
    shortness of breath, swelling of the feet or legs due to fluid build-up (heart failure)

Tell your doctor if you notice anything else that is making you feel unwell. Other side effects not listed above may also occur in some people.”

ImageYIKES!

How did this person become the admin of a community that is trying to get well?

I don’t like the fact that she blocked my posts, but what bothers me even more is that she is promoting this horrendous drug to others as the best option available.

Another thing that irritates me about the overall “unwellness” of these online communities is that the admins are usually quick to say to anyone that finds some sort of relief “that’s great that you found a remedy … I hope that your success continues. Remember there are many paths and many solutions.”

ImageTRANSLATION: “Whatever you did won’t help me. There’s no sense in my even trying. My RLS is far worse than you could ever imagine. It’s a heavy cross I bear!”

What kind of support is this? It makes no sense?

This is especially true at RLS.org where they have a specific board for “Natural Remedies”, yet this board is monitored by pro-med administrators.

I contacted Georgianna Bell at RLS.org and to her credit, she got back to me right away. She said she would look into it.

I hope this issue is dealt with, but I’m not going to hold my breath.

This is a travesty for anyone looking for help.

Here’s my analogy to help put this craziness into perspective.

ImageLet’s say I’m a recovering alcoholic with several years of sobriety, now living a wonderful life.

I have my life together, I feel great, and I want to try and give back – to help others that are in a place that where I once was. A place that was dark, painful and without hope.

I visit an online community for alcoholics that are trying to stop drinking.

ImageIt turns out that most of the community is taking Antibuse (a supplement that makes you barf if you drink alcohol) as their way to stop their habitual drinking, including the moderator.

Antibuse doesn’t heal or change anything and doesn’t deal with the reason WHY you drink in the first place … all it does is make you sick when you try to drink. It’s really the definition of a “band-aid” cure.

Most of the talk on this community board is about the right amount of Antibuse to take.

So, I draw from my experience and post a comment of how going regularly to AA meetings has really helped me, as well as attending a treatment center, reading books on recovery, getting a sponsor, meditating, praying, following a proper diet etc.

The pro Antibuse moderator then either:
a) belittles my methods, and makes it clear that if this hokum worked, then I wasn’t a real alcoholic.
b) deletes the post before anyone sees it because it might corrupt their minds.

I’m sure many of you are as frustrated as I am.

Hopefully, someday, someone creates an RLS support community that allows ALL points of view, without censorship.

ADDED NOTE (Aug 15, 2013)

I’ve been allowed back onto the RLS UK discussion board (thanks to a lot of support from some of their members who protested the ban). To say I’m on thin ice there is an understatement.

Also, my post about RLS being a symptom has been put back up at RLS.org. They said that it was originally deleted by mistake. I’m also wearing out my welcome there.

7 Comments »

  1. Agreed!!!!! I hope you keep going!!

  2. Donna said

    what happened on the UK board was the fact that at one point, and you KNOW this is true, you were advertising counseling sessions, and when you were asked about your credentials, you ended up being booted because there us NO selling of ANYTHING allowed on that site of the US Foundation’s page. You removed that thing about counseling, as far as I can tell, so good! But, if not for that issue and the fact that you use the phrase the “Absolute Cure” is what puts people off. But, you are well aware of that. I would not have such issues with you if you would just STOP using the word cure. what is srong with the “Absolute Treatment”? You have no doctor citing on your sites or pages that they think you have found the “absolute cure”. You know what I mean, and you would get a much better reception if you would just change the name. I tell my groups to stay away from the word cure, because every nut on the internet that advertises a “cure for money” has ruined that for you, David. What about the Ultimate Treatment? Many slihtly different names would work better to yur advantage, trust me.

    • rlsottawa said

      I never advertised any counseling service on that board or anywhere else. I suspect that all my posts have been removed, but if they are still up, you’ll never find a post of me mentioning counseling or any other paid service. That’s not why I created the rlcure.com website.

    • rlsottawa said

      I explained in a post awhile back why I call it a “cure.” That’s never going to change, because I believe with every fiber of my being that there is a potential (non medical) cure for every individual’s RLS. The hard part of course is finding your particular cure. A lot of sacrifices need to be made, so it’s not a very popular option. It’s way more helpful for people to hear that there is a cure vs. there is no cure. It’s then up to each person to decide whether they want to put the required effort in to experiment and find out what works and what doesn’t work for them. Eventually, the changes that people need to make will be more commonplace. For example, 20 years ago, an anti-inflammatory diet was a little “other there.” Now, it’s just common sense. Here’s the post about why I call it a “cure” https://www.facebook.com/AbsoluteCureForRLS/posts/911968752166460:0

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