Last week thedragon posted a comment in the 'Posts' section entitled 'Objection!' about the restriction of Dwimble on the forum. There were various comments in response to this and also under related posts. I responded but due to a technical problem with Health Unlocked, the post did not appear in 'Latest Activity' and so I'm posting a slightly shortened version here to make sure it is seen by more people. I want to set the record straight about why Dwimble was restricted and why we did not remove the posts about the halcyon bracelets.
6 days ago Tiredparent Administrator
I am very disappointed about some recent comments from forum members. As Administrators, we are sometimes asked to delete posts or restrict forum members for all sorts of minor reasons. In this instance, we had very good reasons, and yet we were accused of acting inappropriately. Do we need to go to you each time to explain what has happened and get your agreement before taking action?
I restricted Dwimble last week for three reasons:
- he posted a link which I felt was likely to cause offence (‘Your RLS is not a disease. It's a blessing in disguise’). I deleted it.
- the post contained a link to a website which included an advert for a document promising a 'cure' for $30. I sent him a detailed message explaining that we did not permit advertising and that this was why he’d been restricted. He denied knowledge of the document and there is now no reference to it on any of his sites. His website and related sites may or may not contain useful information but the advert made me feel he was using them as a vehicle for promoting this document. Being restricted means that someone can still view the site but not post comments or send personal messages under that user name. Their previous posts remain visible (if they have not been deleted). Unsurprisingly, Dwimble used a new user name to get round this. We restricted Dwimble and sent him a note explaining why so that he was aware of the rules of the site. These are the procedures we follow if anyone breaks the rules. If despite the warning, users continue to break the rules, then we may decide to ban them which permanently blocks the user from all of HealthUnlocked, erases all the content already posted, and blocks the user from signing up again.
- On 5th Aug he posted on our forum ‘A list of remedies that will lessen your RLS’ and a link to his website and then on the 9th Aug he posted ‘Your RLS is not a disease. It's a blessing in disguise’ also linking to his website. I felt that to have two posts for the same thing in the same week was a bit much. Clearly he has absolute confidence in his beliefs but I do not want our forum to be his soap –box. (ie, platform for him to repeatedly express his views and dominate the forum).
In response to the comments about the halcyon bracelets, when I first became aware of the bracelets, I spoke to the lady selling them and explained she couldn’t advertise them on the forum. She has not done so - the original post was put on by a forum user. Therefore there was no need to remove her posts or restrict her.
The Administrators are volunteers (and RLS sufferers) and we do this role because we feel passionately about supporting sufferers and sharing information. We are trying to ensure that the forum remains a useful tool for everyone and we can't please everybody all of the time. No doubt, if I hadn't deleted Dwimble's post and restricted him, some users would have complained. I find it very disheartening that I spend a huge amount of time helping to manage this forum,(as do the other Administrators), and yet some users have no qualms about criticising what we do. If the Administrators didn't do this role, the site would turn into a free for all. I have had several occasions when I have been close to resigning from the role as I have been so fed up with the petty arguments, the stress of this sort of issue, and the amount of time the role has taken up.
Rosie, Vice Chair RLS-UK
Written by
Tiredparent
Restless Leg Syndrome
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31 Replies
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well most of that abouit dwimble i didnt know so sounds fair to me, sorry for any comments i made Rosie
I don't know why you keep bringing it up this mysterious document? I don't have a document of any kind that I'm trying to sell?
If you read the testimonials from my website (from people who had RLS just as bad as you and I) you'll notice that several of them mention how the information was available to them for free. rlcure.com/tes.html
Again, I stress the fact that I'm not selling anything, nor did any quick cover-up to hide a document that I was selling.
And the links that I present in this forum are meant to be informative. Information that people can either agree with or not. I'm just presenting some options.
If you do check out the testimonials, you'll see that the anti-inflammatory approach is having amazing, life-changing effects on many people - and I just want to share that with anyone who will listen.
Here is the intro from my website (it has been unaltered for several years now). It clearly mentions that I'm not selling anything ...
"This website contains every detail about a NATURAL REMEDY that put an end to my 23 years of suffering from Restless Legs Syndrome (the last 8 years being VERY intense).
Everything you need to know about healing your restless legs can be found at this website. There is no cost and there are no teasers to try and get you to purchase some sort of product.
I'm not selling anything. Everything you need to know is available for free. The required supplements will have to be purchased by you at your local Health Food store."
I don't know why this has been brought up again . But I for one feel the information Newman gives is invaluable. I am interested in any ideas people have. It's up to me if I want to pay for stuff or not if required . I know admin is a difficult job and I appreciate all the time admin have to put in .but that is the nature of running web forum sites. And I repeat I saw no request for money on dwimbles site.
I brought it up again because I felt that the Administrators had been unfairly criticised and I wanted users to know the truth. I also hoped it would clarify what was and wasn't acceptable on the site to try to avoid these problems happening in future. When I looked at Dwimble's website at the time, the advert for the document was there and I know others who also saw it. We do not allow adverts. We have no problem with Dwimble's information - forum users can make their own decisions on that.
On the internet, it is impossible for us to know if a person posting a question or comment about a product is genuine or actually the person who owns the company who is trying to bypass the 'no adverts' rule. Unfortunately we know that there are unscrupulous people out there who are trying to make money out of RLS with products and methods that they say will work. RLS sufferers are often desperate for a 'cure' and will do anything to find something that works. As Administrators we walk a fine line trying to make people aware of these scams and trying to prevent people wasting their money on them and yet still allowing people to make their own minds up about things which might potentially work for them. We are not in a position to play judge and jury about which are good and which aren't, which is one of the reason why we do not allow adverts. As we've said before, what works for one person, may not work for another, and that applies to prescription drugs and all sorts of other things.
I have been a moderator on another forum for one year and it was very time consuming and not everyone can be pleased with the final decisions taken, not even those working behind the scenes, all of the time. It was much harder work that I had ever envisaged.
There have to be rules to enable the smooth running of a forum and it is the moderators/administrators that know much more about what is going on than us who use the forum to post and find out information. The least we can do is honour their decisions.
Thank you for all your hard work. It is appreciated, by me, as I have had a taster of how difficult it can be at times.
In any group I have ever been in, the administrators make decisions, and usually are not questioned and objected to like here. Admins have to make decisions, for THEIR groups and sometimes it is detrimental for the whole group to know all details. they are leading us and taking care of this group, and the rules are the rules. That is how I was brought up anyway. My hat is off to the Admins here, and they are much appreciated, plus they are the admins for a reason, and while they may ask our opinion, they make final decisions and not all ,members in a group this size will be happy all the time. I say, and this is my opinion, if you do not like the group or how they are running it, leave and start your own, and see how much fun that is. The same few people try and incite trouble around here, and Elisse said what I was going to say, so well done! How can someone say they have the Absolute Cure, when they admit it is all theories right on their own web site. Theory is not fact, it is conjecture and no true studies have been conducted as far as I can see from what Dr. Weinstock says. There is not an absolute cure yet, and no one can claim that achievement in all honesty. I never post, but this has brought me out. I think this subject is closed and we do not see any more posts about that web site. We have seen and read enough. Overkill does not make one's point.
Well, i hate those that just want to push their product to us, in any way shape or form, i also hate being talked down to, and lectured, and wont put up with it for anyone, im a grown woman and wont be treated that way. i hate sarcasm also, but i can do my bit if i feel someone is being sarcastic with me,i have had a few disagreement's on here myself, well i dont think that can be helped really, we are human after all, and will disagree with each other at time's, that's life really, and i make no apologises for having an opinion, we all have one.
I appriciate all that admin do very much, sometimes it's a thankless task for them, but they stick to it, so well done to them, if it wasnt for them we would not have this forum would we, so im gratefull for it.
Hi, im also a moderator in a group, nor RLS though, and yes we have our tiffs also, what is it they say " to err is human, to forgive divine" , i dont like the sales pitch's either, or sarcasm and trying to goad each other to carry on a dispute, be the better person, let it drop, it's not doing a bit of good.
As for admin, well done on a good job, you have my thanks also
I am REALLY REALLY annoyed...I do not come on here to incite arguements . but if i disagree with something I WILL respond.
I know what running a forum like this involves. I have been there , done that and comittees and all sorts. I know it takes time and effort and a thick skin and sometimes I have had to stop when other things required more than I could give! such as young children and work .
I can see from my own experience that there are just ONE or TWO members on this site that always jump in to say ""OOOOO thats not allowed" and I WILL be the one to say WHY NOT!!!
If a remedy asks for money and I fall for a fake , then more fool me!!
the "SOAP" remedy as been poo pood many times, yet I heard yesterday from some one it works for! so never say never......
I do appreciate this site and the work admin do ....thankyou
But this "allowed and not allowed" buisness is ridiculous..I feel like a child in the playground who cannot make her own decisions..." my mom says its not allowed!!!
Groups have to have rules, and Rosie has explained that to you and everyone else very clearly. All groups have to have rules. IF one does not like the rules , then maybe another group is for you. I am not trying to be mean here, but groups have to have rules, or, as they say, a free for all will ensue. Most all groups that I have checked out have rules, and they are followed, and never I have I seen this much angst over the Admins putting down rules. Certain things should not be allowed. And, this constant bickering against the admins really just needs to stop. I am sure they have very good reasons for what they are doing. I am sure lots goes on in the background that members have no idea about. But, a rule is a rule, and the admins wishes should always be accommodated. I sit back and read, and I see what is going on here. I personally want to choke anyone who used the word cure. There is no cure, there are treatments, remedies, personal habits we develop to help ourselves, and we try and help others. Questionable information should never be presented as fact. And, from what I see, the Absolute Cure HAS taken over this site. I will not be commenting at all on this subject any more. I don't know anyone here, at least I don't think so, so these are just my own observations. I hesitate to post to this at all, because it will keep it going from the posts I se above. Rules are made for the group's good and protection. We all have the internet available, and everything on the internet with an RLS label is not always appropriate for a group. Those are my observations. Maybe some of you who welcome a "free for all" in a group, maybe should start their own side group, for things like soap and "cures". I am in one other large group, and that group runs liked clockwork. Rules are understood and adhered to, or there are "consequences". I am done now, but maybe some people would be happier in a different setting. Certain people put up posts that are meant to stir things up, and it is obvious they do not care what the admins say, and that is extremely my disrespectful at the very least. My own opinion, and my last post on this. I think helping others and telling the TRUTH is the most important thing here. If a rule is made, it is a rule, and that's it. Sorry for a rant.
I respone I AM NOT PUTTING DOWN ADMIN I am stating how i feel just as you are...I do not disagree that the word cure is inflamatory, But just because there is not a universal medical CURE..does not mean some people have not found a way to ease their RLS or stop it for themselves. These are the people I need to hear from. what a waste of time a forum like this would be if we just discussed what we always do like how different ineffective treatments have made us worse , or what can i try next. I am afraid you are totally missing my point!!!! If I am upsetting anyone in any way with MY opinionated beliefs , as others seem to be able to do, then please ADMIN...tell me get off the site and I will!!!
?? i fail to see where The dragon is putting down admin, i think shes just trying to say that she wants to make her own choice of what she reads, just stating her opinion realy same as we all are, one thing i do know, we all find different ways of coping, so i religously look up anything on the internet, not fallen for any con's yet, fingers crossed i dont.
in any group the admins have rules. There are certain things that should not be allowed and it is up to THEM if it is allowed or not. any of this information is clearly on the internet for you to read, and the site has been posted and copied and pasted to death. How can I say it any different? Everywhere you go in life are rules, like it or not, and a group like this has to have its reasonable boundaries...................Respect for the administration should be used and if not expect the consequenses.
In my own defense, I have presented some free information, all backed by scientific studies. I'm not looking for an argument or a tussle with anyone.
When you read through the posts it's the reaction to my information that caused a stir. Actually, it's two words that caused the stir "Absolute Cure."
Who really cares what I call it? If you're having an intense reaction to the name, then the issue is with you.
If you have a bad case of RLS, again, what does it matter what I call it. The fact is that it produces results.
I also cite scientific studies to support everything I claim.
I communicate with Dr. Weinstock on occasion. He understands the two different worlds we live in. In his world, he cannot make any claim or statement until a hypothesis has been proven and reproven to death. Even though the results are obvious, his hands are tied by a) The Scientific Process and b) funding for further testing.
However, I asked him to send me an overview of his study in "layperson's terms." - the gist of what his results are showing us. It is obvious to he and most people that read his study that inflammation is deeply connected to RLS. I'll post those comments when I receive them.
But, as is the case with everything in life, the proof is in the pudding. Many people have tried my method with amazing success.
Before you freak out because I'm taking over the board again, I would ask that you check out these testimonials from my website.
Tell me anywhere in the world where you can find RLS sufferers reporting results like this?
These people are not masking their symptoms. These people are getting better.
I'll leave you with these statistics (they are all backed by studies that you can find on my website).
1. studies of 41 inflammatory diseases and conditions have been tested for RLS. All studies show a higher prevalence of RLS
2. two human conditions, pregnant women and elderly people both have a higher presence of inflammation and both have a higher prevalence of RLS
3. the most notable triggers of RLS are all inflammatory
4. the most effective non-pharmaceutical remedies such as iron, potassium and magnesium all have anti-inflammatory properties
5. there is no pharmaceutical anti-inflammatory (NSAID) in existence that doesn't have SEVERE side-effects with prolonged use. So, an anti-inflammatory drug is NOT an option for any inflammation-based ailment.
The doctors, scientist's and pharmaceutical company's hands are tied. They have no solution to deal with the endless results pouring in that identify inflammation as a primary factor in so many diseases and conditions.
Dr. Weinstock in all likelihood is not going to find funding for any additional studies. The pharmaceutical companies don't have any drugs that heal inflammation, so why would they foot the bill for any future studies that are going to keep pointing to the same thing?
The fact is, if a company WAS able to produce a harmless anti-inflammatory, that could do its job with no side-effects, it would be a TRILLION dollar drug.
Brilliant post Newman....it explains where you are coming from and it totally makes sense to me. Maybe rls needs a complete rethink and this is a totally different angle , but it's one I can see! One question I do have for you is the incidence of rls at a young age. Mine first started when I was about 10. I would get it very occasionally.....gradually increasing in length and frequency as I grew. Any ideas? I know it is an academic question really but it would be good to figure out why !
I'm actually in the middle of doing an article on RLS in children. I'm also going to be creating pages for pregnant women and elderly people.
One cause of inflammation in children, other than the obvious ones such as food intolerance, allergies, mold etc. is something called "phthalates." If your a parent, you might have heard of this.
I haven't formatted my info yet, so I'll give you a rough outline of what's going on with this highly toxic substance (it's VERY scarey stuff).
"Studies have shown that premature babies are exposed to extremely high concentrations of phthalates, with the latest research showing a direct link between exposure to phthalates and excessive inflammation.
Inflammation is known to trigger a number of diseases in premature babies, including a chronic lung disorder known as bronchopulmonary dysplasia and necrotizing enterocolitis, an intestinal condition.
Researchers from the University of Medicine and Dentistry of New Jersey (UMDNJ) also reported that phthalates encourage the formation of hydrogen peroxide, which can kill cells and damage tissue when produced in excess.
With each plastic tube that a newborn is hooked up to, the rate of phthalate exposure increases. And for those premature infants who spend weeks and months in the neonatal intensive care unit, the exposure levels can be extraordinary.
Other studies have linked the chemical to thyroid problems in both women and men, and researchers have also suggested a link between phthalates and illnesses like allergies, asthma and contact dermatitis, all of which are on the rise in children.
In July 2008, the U.S. Congress finally passed legislation banning six types of phthalates from children's toys and cosmetics. Legislators in Washington, Vermont and California have also restricted phthalate use in children's goods, and several major retailers, including Wal-Mart, Toys-R-Us, Lego, Evenflo and Gerber claim they will phase out phthalate-laden toys voluntarily.
"it shall be unlawful for any person to manufacture for sale, offer for sale, distribute in commerce, or import into the United States any children's toy or child care article that contains concentrations of more than 0.1 percent of" DEHP, DBP, or BBP and "it shall be unlawful for any person to manufacture for sale, offer for sale, distribute in commerce, or import into the United States any children's toy that can be placed in a child's mouth or child care article that contains concentrations of more than 0.1 percent of" DINP, DIDP, DnOP. Furthermore, the law requires the establishment of a permanent review board to determine the safety of other phthalates.
Prior to this legislation, the Consumer Product Safety Commission had determined that voluntary withdrawals of DEHP and DINP from teethers, pacifiers, and rattles had eliminated the risk to children, and advised against enacting a phthalate ban.
However, phthalates are still found in:
Medical equipment
Toys
Food packaging
Hoses
Raincoats
Shower curtains
Vinyl flooring and wall coverings
Lubricant and adhesives
Detergents
Beauty products like nail polish, hair spray, lipstick, nail polish remover and shampoo
Fragrances
Tap water
Food (meat, milk (plastic tubing at dairy farms contains phthalates) and others)"
Oh interesting. I do remember reading about this some years back. And I agree it is really scary. The modern world can be pretty c®®® but I don't really feel I was exposed to this anymore than anyone else of my generation. In our day we didn't have toys!!!! Ha ha . I do have my own theory in that thyroid/rls/depression/addiction/compulsion as in dopamine driven illnesses are all linked on the same gene. Something? Is a trigger, which activates the symptoms. I would be interested what you think.
I don't know anything about genetics other than genes display tendencies, not etched in stone patterns.
I was an addictions councilor, so I'm kind of biased when it comes to scientists continually looking at genes for the answer to everything.
People that drink, overeat, gamble, do lots of drugs etc. are hooked on the dopamine rush that comes with the act, and also the dopamine rush that comes with the profound guilt and shame after the act.
It's a survival method, to as they say "feel a sense of ease and comfort." A way of numbing and masking the deep and tremendous pain that lies within.
I believe (and any recovering addict will agree) that people act out because they are in pain. Not because of a genetic oddity.
if you are going to study RLS, you do need to know about genetics. webmd.com/sleep/disorders/n... Do some googling. IF one has a web site such as yours, you need to present all information. There were also genes found in 2007 and 2009. FYI
Not all people on here DO know about genes and the RLS connection. People who are new to RLS researching or new to the diagnosis, may not know about the genetic connection, and the scientific studies behind it. We, who have been studying RLS for a long time have a right and the duty to help out where we can.
I believe this thread was started by Rosie, the Administrator, and it has now been hijacked into something totally different. Let's try and stay on subject, and if you are talking about something else, other than what she was referring to, it is time for a new thread and a new post. It is only respectful to do that, since she was bringing up group business, and not looking for half of someone's web site to show up here under HER post. Very disrespectful. I will address the gene issue in a NEW post, as it should be.
Yes the thread was started by Rosie and it ha evolved as threads often do into a very interesting discussion. I dont need to be told what to do thankyou
and I dont see Rosie or anyone else objecting and I am sure she knows there is no disrespect to her whatsoever!
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and you allready said this 
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