Archive for RLS.org

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.

 

 

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RLS.org Outdoes Themselves … again

RLSORGheade1rIt’s been a few years since I’ve gone off on a rant of any kind. I started this blog with a bit of fire in the belly, but a cooler head prevailed and I realized that I would be more helpful if I passed on the facts to readers of this blog, and kept my comments and opinions to myself.

However, a week or so ago, I saw the new header at the RLS.org Facebook page. My jaw dropped.

I showed my wife Barb the header (just to make sure I wasn’t out of line with my thoughts that it was wildly insane) and she agreed that it was highly disturbing.

But, I wasn’t going to say anything about it, I mean, what’s the point. That’s their business, and if people like it, who am I to judge? That was until I saw on their blog that they’re actually selling this thing. Wow!! What the fuck!

wordlI apologize for the potty mouth, but this is crazy.

Let’s look at this brilliant idea in a different context.

My father passed away several years ago. He was riddled with cancer. It was horrendous, as many of you know … but as a family we did our best to support him and comfort him.

What kind of moron would have thought that it was a good idea to give my dad this “wordl canvas” as a gift.

“Here you go John, put this up on your wall. You can feed your mind and spirit with words like Hopeless and Excruciating, Depressing and Aching, Torturous and Unbearable. No need to thank me. Hope you get better soon!”

Anyway, you know, what can I say. I think it is possibly the most horrendous idea in the history of any healing organization!

I’ll just leave it at that.

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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.

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RLS.org: Why They Scare Me

One evening, several years ago, I had a life changing experience. I have never looked at the world the same way again.

I still shake my head in amazement every time I think about what I learned that night.

I was attending my Addictions Counseling course and the teacher casually mentioned how doctors received incentives from the pharmaceutical companies to push their products.

“That can’t be right?” I thought. “That’s too inconceivable?”

I raised my hand and asked the teacher to clarify what he had just said. I figured that I must have heard him wrong.

He calmly elaborated on how the system worked, and that doctors were compensated with  TVs, trips etc. It didn’t seem like that big a deal to him. And then he went on with the lecture.

For me, the rest of the evening was a blur. I lost some sort of innocence that I could never get back. Here was a crime so corrupt that it transcended description and fell far below the lowest realm of ethics … yet somehow, it was perfectly legal? To this day, it STILL boggles my mind that this could be allowed?

The reason I mention this is because when I was posting my remedy on the RLS.org discussion board, someone replied to my post saying that Dr. Buchfuhrer states that inflammation is NOT the cause of RLS … so basically, take a hike.

I responded by saying I don’t know who Dr. Buchfuhrer is, but if he says that inflammation is not the cause, he’s wrong.

That started a bit of a fire fight. I didn’t realize that Dr. Buchfuhrer was a trail blazing icon for many RLSers. It turns out he’s also a member of the RLS.org Medical Advisory Board.

I figured if he’s such a great guy, maybe he’s more open-minded than the average doctor, and would be interested in hearing about my story and how I’ve come to believe that inflammation is the primary cause of RLS. I thought that he could be the inroad into the scientific community that I was looking for, and finally some RLS studies could be done based on a remedy that I truly believe will work for anyone that follows it.

So, I did some Googling and found a few links for Dr. Buchfuhrer.

I found a bio. It was pretty basic. Seemed like a nice guy. I went to the next page, and that’s when I had the terrible flashback to that night, long ago, in my Addictions Counselling course.

On this website I was looking at was a video of Dr. Buchfuhrer promoting Mirapex. If you’re not familiar with Mirapex, it’s one of the top drugs that are prescribed by physicians to their RLS patients.

You can visit this link to watch him doing the Mirapex commercial.
http://www.mirapex.com/HCP/mirapex-doctor-testimonials.jsp

The website has a disclaimer stating that the doctors giving these testimonials were compensated (just in case we though they were doing it for free).

“The doctors who appear on this site have been compensated for their time by Boehringer Ingelheim Pharmaceuticals, Inc.”

Here is Dr. B’s testimonial from that same website:

“My overall experience with MIRAPEX has been very positive. It’s a medication that can be used with very low dose and works very, very well and both effectively and safe for most RLS patients.” – Mark Buchfuhrer, MD

Now, here’s the interesting part. Here are the potential side-effects of Mirapex … as stated on the Mirapex website. http://www.mirapex.com

“MIRAPEX may cause you to fall asleep without any warning, even while doing normal daily activities, such as driving. Before taking MIRAPEX, talk to your doctor if you drink alcohol or take other medications that make you drowsy as these can increase the chance that MIRAPEX will make you feel sleepy or fall asleep when you should be awake. When taking MIRAPEX, hallucinations (seeing, hearing, feeling, or tasting something that isn’t there) may occur and you may sometimes feel dizzy, nauseated, faint or sweaty when you sit up or stand quickly.

The most commonly reported side effects of MIRAPEX that were more frequent than with placebo are nausea, dizziness, sleepiness, difficulty falling asleep, involuntary movement, and constipation. In clinical trials for advanced PD, the most commonly reported side effects of MIRAPEX that were more frequent than with placebo are low blood pressure when you sit up or stand quickly, involuntary movement, difficulty falling asleep, dizziness, accidental injury, hallucinations, and dream abnormalities. You should talk with your doctor if you experience these problems.

There have been reports of impulse control disorders and compulsive behaviors in patients taking certain medicines, including MIRAPEX. If you or your family members notice that you are experiencing new or increased gambling urges, increased sexual urges or other intense urges, such as compulsive shopping or eating, while taking MIRAPEX, talk to your doctor.”

I kind of go speechless after I read this stuff.

Now, I’m sure many of you think that I’m some sort of conspiracy theorist, and that there is no real evidence that doctors receive perks from the drug companies. You probably think that it’s more of an urban myth.

I wish that were true, but it’s not. It’s a real live ugly situation.

Thankfully, the authorities are finally trying to clean things up a bit.

I think you could spend all day finding examples online, but here are a few.

From ABC News …

“Further investigation into the $6 billion spent by drug companies for what they say is a way to educate doctors showed that tactics like lavish gifts and trips are surprisingly common.

“It’s embarrassing, it’s extravagant and it’s unethical,” said Dr. Arnold Relman, a Harvard Medical School professor and the former editor of the New England Journal of Medicine. “It makes the doctor feel beholden … it suborns the judgment of the doctor.”

Few doctors were willing to talk publicly about their relationships with pharmaceutical companies, but one upstate New York doctor was willing to come forward.

“It’s very tempting and they just keep anteing it up. And it’s getting harder to say no,” said Dr. Rudy Mueller. “I feel in some ways it’s kind of like bribery.”

Disgusted by how the free gifts and trips add to the high price of medicine, and moved by the plight of patients forced to skip needed medication, Mueller agreed to provide Primetime with a rare glimpse of the astounding number of drug company freebies he was offered by various drug companies in a four-month period.

He was presented with an estimated $10,000 worth, including an all-expenses-paid trip to a resort in Florida, dinner cruises, hockey game tickets, a ski trip for the family, Omaha steaks, a day at a spa and free computer equipment. “

Brian Ross and David W. Scott, “Do Drug Company Perks Influence Doctors? How Pharmaceutical Companies Use Enticement to ‘Educate’ Physicians” ABC News abcnews.go.com/Primetime/story?id=132141&page=1

From the New York Times …

“In a scolding report, the nation’s most influential medical advisory group said doctors should stop taking much of the money, gifts and free drug samples they routinely accept from drug and device companies.

Drug companies spend billions of dollars wooing doctors — more than they spend on research or consumer advertising. Much of this money is spent on giving doctors free drug samples, free food, free medical refresher courses and payments for marketing lectures. The institute’s report recommends that nearly all of these efforts end.

The largest drug makers agreed last year to stop giving doctors pens, pads and other gifts of small value, but company executives have defended other marketing tactics as valuable to both doctors and patients. Medical device and biotechnology companies have yet to swear off free trips or even pens.”

Gardiner Harris, “Institute of Medicine Calls for Doctors to Stop Taking Gifts From Drug Makers” The New York Times (April 28, 2009) www.nytimes.com/2009/04/29/health/policy/29drug.html

From “The Day” …

“The bill, SB-270, requires drug and medical device companies to adopt a marketing code of compliance that, among other things, would limit gifts, meals and continuing-education benefits to physicians as well as force companies to publicize interactions with health care providers.

“This bill can really hinder or change the relationship between doctors and our field representatives,” said Pfizer spokeswoman Liz Power in a phone interview. These salespeople provide “critical information about prescription medicines” to busy doctors, she added.”

Lee Howard, “Pharma Opposes Bill to Limit Perks for Doctors” The Day, New London, CT. (April 22, 2010) www.theday.com/article/20100422/BIZ02/304229351/1044

They’ve actually done studies on how these perks affect doctor’s decisions.

From “The International Journal of Health Services” …

“Evidence suggests that physicians’ interactions with pharmaceutical companies do affect physician behavior. In 2000, Wazana’s analysis of 16 studies found convincing evidence that interaction with drug companies led to preference for prescribing a given company’s medication, inability to identify false claims about a medication, non rational prescribing behavior, increase in prescribing rates, and prescribing fewer generic equivalents, even when more expensive medications demonstrated no advantage. “

Sarah Roberts and James Jastifer, “Patients’ Awareness of and Attitudes Toward Gifts from Pharmaceutical Companies to Physicians.” International Journal of Health Services (2009) www.britannica.com/bps/additionalcontent/18/37699018/Patients-Awareness-of-and-Attitudes-Toward-Gifts-from-Pharmaceutical-Companies-to-Physicians

I don’t mean to dump this whole sick twisted system on the head of one guy. I’m just presenting some facts to help you better understand the current RLS treatments, and what options are available to you.

To better understand the current relationship between the Drug Companies and doctors, and how it consciously or unconsciously influences the doctor’s decision to hand out pills, imagine if the same system was in place for your local Police Department.

Imagine if your local police department had an unlimited budget, and in order to lessen the crime rate, every time an officer made an arrest, they would receive a $100 bonus.

The arrest rate would obviously soar to new heights.

It’s also true that if every arrest was examined by an ethics committee, the officers would be able to justify every single one of them. They would also try to convince the committee that even if the financial incentive was not in place, each of the arrests would have still been made. The spike in the arrest rate since the new initiative was put into place, is pure coincidence.

This is where we stand today. We have inherited this extremely corrupt and unethical system. And now, finally, changes are being made.

As an RLS sufferer, you have to wonder how many RLS sufferers out there are taking Requip, Mirapex, Sifrol etc. because of these incentives? And you also have to wonder, are you one of them?

For free information about the cause and cure for Restless Legs Syndrome visit www.RLcure.com This remedy for RLS is completely natural and features NO side effects.

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RLS.org: A Make Work Project

Six years ago my wife Barb informed me that there was actually a name for the “wonky legs” I had been experiencing for many years. She told me it was called “Restless Legs Syndrome.”

What an awesome breakthrough that was. It turned out that I wasn’t some sort of freak with a weird disease … and I wasn’t alone. There were millions of people like me suffering from the same strange ailment.

I started researching Restless Legs Syndrome and found out that the only help at that time were pharmaceuticals that often produced uncomfortable side effects. For whatever reason, I ruled pharmaceuticals out as ever being an option.

At that point, I set out find out every other option that was available to me.

In my internet travels, I ran across RLS.org. This US agency based in Rochester, MN seemed to be the nerve center of anything to do Restless Legs … especially in the US and Canada.

A few years later when I was confident that the RLS remedy I developed would work for everyone, RLS.org were the first people I approached with the good news.

Of course at that time my remedy was still in book form, and ultimately I was trying to make money from this discovery. The plan was to have some RLS.org members try out the remedy (I was going to pay for all the supplements) and once they found out that it worked, they would let other members know about the book and its amazing remedy.

After that, it was just a matter of counting the piles of money.

As I’m sure you guessed, that never happened.

The first lady I approached at RLS.org was Janice E. Hoffmann, the chair of the Board of Directors. The reason I chose her was not only because she was high up, but because from her bio I found out that she was a musician. I thought that there was a good chance that she had heard of The Indie Bible (the music directory I publish). If she had heard of it, that would give me some sort of credibility.

Nothing ever came of that. She never even replied to my e-mail.

I didn’t understand at the time what was going on? Here’s this giant organization bound together by one noble cause, and when someone contacts them saying that they’ve found a solution, they’re ignored?  (this would all make sense to me later).

I called up the main switchboard and told the operator about my situation and asked who would be the best person to talk to about it. She suggested that I contact Georgianna Bell, the Executive Director. I eventually got in touch with Georgianna and told her about the remedy, and what my plan was.

To her credit, she was somewhat open to having RLS.org members review the information, as long as my book met her standards. But, as far as running any sort of test or study, that wasn’t going to happen. She was going to review the material and if she found it to be plausible, she would mention it to other members.

I’m not sure if that ever happened? I never heard back from her. I left her a message a few months later after I decided to put all the remedy information up on my website for free. Again, she never got back.

She had a medical background, so the fact that she even hinted that she may recommend that RLS.org members read my book, should have been considered a major victory.

So, I guess the point of this whole post is to emphasize the fact that this organization that considers itself to be the beating heart of hope, is nothing like that.

They are the beating heart of the problem … they perpetuate the dream that someday soon, a mice torturer is going to run out of their lab screaming “We’ve found the cure!”

That is not going to happen … ever!

These RLS.org people are not stupid or bad … they’re Scientists. They all have scientific minds. Brilliant, but not very open. Hopefully, for your sake, and for the sake of all those that still suffer, they can get out of the way of their own brilliance.

You would think that a few of them must have read the posts and articles about ALL the people who have become free of their RLS through diet, vitamins, minerals and herbs. How can you just shrug all those positive experiences off as being whimsical?

The pathway to healing that RLS.org follows is a medical pathway. Their members all have medical backgrounds. They have a Medical Advisory Board. They have a Scientific Advisory Board. Their funding is provided as a means toward medical research.

That’s means their final solution is going to be a drug. And we all know how that goes.

Their goal is stated quite clearly through their grant program.

“Through its research grant program, the RLS Foundation honors promising scientists whose work addresses the goals of the Foundation. The RLS Foundation encourages grant applications for basic and clinical research studies of restless legs syndrome (RLS). Basic science leading to a better understanding of RLS, innovative approaches, interdisciplinary studies, and support of promising postdoctoral candidates is given funding priority.”

I don’t expect RLS.org to come out of their cave any time soon. They are joined at the hip with Big Pharma, therefore the odds of RLS.org ever recommending or supporting a non-pharmaceutical cure, are nil.

My hope is that eventually the overwhelming number of natural cures will be too much for even RLS.org to keep under wraps. In order to make themselves not look totally robotic, they’ll have to create a section on their website that lists the most popular natural remedies and diets that have been working for people.

That day will be a glorious victory for those that continue to suffer in the dark because of the arrogance and pride of RLS.org and its members.

For free information about the cause and cure for Restless Legs Syndrome visit www.RLcure.com This remedy for RLS is completely natural and features NO side effects.

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