Due to the "disharmony" on quite a few recent posts, I would like to create a discussion to see what members think should or should not be allowed.
In my opinion, any information should be allowed on site. whether someone thinks they have found the ultimate cure (which they may well have done for themselves) or have heard of something which might help or be relevent to someone.
Most information posted on the site will have a link to somewhere else..such as my special K one, a recomended book or website, a treatment option or the copper bracelet one. Or it would require us to go furthur onto the internet to find out more about the subject.
If someone finds a post objectionable.then a simple "I dont agree, this is why.... " will suffice. No furthur follow up is needed. If a person is not interested, then they do not need to enter into any discussion.
As long as no-one is directly selling something on the site, such as " I have some hedgehog poo which will cure all your ills...send me £50.." (which i will if you want!!) then why should it not be posted?
something random may help one person!!! Thats success! surely what a help forum should be about. Soap has been known to help some people. as well as aromatherapy, healthy eating, supplements, copper, headstands, et al!!!!!
Knowledge is power...its up to me to make my own mind up if its the sort of knowledge I want.
Written by
thedragon
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I believe RLS-UK have already clarified our position on what should and should not be allowed on this forum. There are also guidelines set out by HealthUnlocked which mirror these. Without meaning to sound dictatorial, these are the rules about what should or should not be allowed - some users will be so desperate for a solution that they will be willing to pay money for anything which claims to 'cure' RLS - we have a duty to try to protect these people from being exploited on this forum. We also cannot allow a 'free-for-all' allowing anyone to post anything they want on the forum. We promote discussion and debate, so long as the guidelines of the forum and HU are adhered to.
However, it would be interesting to hear the views of other forum users, as to whether they feel the forum guidelines are fair?
I also agree with the Chair, as the "support" group should not be a free for all allowing anything and everything to be posted. If one of us has a suggestion to look at a website site for information(not someone who HAS a website themselves) then we can look if we want to and decide if its something that MIGHT help us. Or if someone has found something that has helped them, and wants to share it, then we can decide if we want to try it, after researching what it is. There is NO 100% cure for RLS, i stand by that, it is always what works for one doesnt for another. If anyone wants a support group to have anyone post anything then maybe they should find a support group which allows that.
I agree with Daragh's statement above. And Elisse. How many times do we say no one thing works for everyone, nothing is an absolute cure yet,. Maybe one day, but that is not going to happen anytime soon. Quoting" IF the epidemiology of a disease is not understood or known, the cure will not be found easily." -Dr. Buchfuhrer Last comment I will make.
please read the original post. the word "Cure " is not the issue being discussed.
please , for the sake of continuity , could folk post at the end of the thread , not as a response to others comments like i am doing now!! ha ha . it just makes things easier to follow as there are so many other comments on this thread! AND ITS MY POST>>>SO THERE!!!!!
Sorry if i get told of for this, well i know i will really!!, but hey ho, but what on earth is going on here, theres hardly any members using the site, and its not hard to see why, its a constant round of bickering, and competing to be the one who knows it all, get a grip folks would we be here if we knew it all, take a step back and look at yourselves !! grow up !! nobody is helping anyone here, its like a battle ground, and then when someone asks for help, theres more comments on the arguments than there is on a plea for help, words fail me, do your lives really revolve around who knows more about RLS,do we really have to put up with the fighting to see whos top dog, i dont think so, grow up for gods sake, your like school children !!!!!!!!!!!!
lost for words,but i agree with sister3, and i think we do need to be allowed to decide for ourselves, what we are interested in we are grown ups afterall,
Thank you for this sister3. I have been trying to say the same for months but it has constantly been ignored. It is a small number of people and their constant in-fighting which is putting others off using this forum. The people in question are regular forum users.
Despite your comments, I have a feeling they will continue to act in this manner. So many of them have little digs at one another, thinking we don't notice. But we do.....
oo, thought i would get told of !! yes, maybe the will dig a hole deep enough that while they are down there, we cant hear them bickering, and thank you for this.
Unfortunately some of them refuse to accept that they are part of the problem or that their selfish, petty disagreements are resulting in other people leaving, people who come here for support.
If they know that they are part of the problem (and we have written to many of them to tell them that they are!) and they are continuing to participate in this sort of behaviour then they should, in my opinion, be ashamed of themselves.
I agree that ALL information should be allowed to be presented.
I'm not sure how many people are in this group, but if something is posted and it helps one out of a hundred people, then that has to be considered a success.
To date there are 1109, amazes me rally as we only ever get posts from a few, i guess some have left, some are just watching, and the majority dont want to get involved in the constant arguing !
Personal comments between competing posts are upsetting to me even if they are not directed toward me but I think I must be in a minority, how many people thrive on conflict ? Quite a lot....there are lots of tv progs where people are setup against each other just for entertainment. I would prefer it not to happen here, I just don't want to see it. As my mum used to say "if you can't say something useful in a nice way zip it"
exactly Miggles, i do hope ive have not done anything to upset you in anyway, if i have im sorry
Vince posted on here that he would like to see more useful
information such as making a forced transition from working
full time to suddenly being jobless when RLS is the cause.
I do agree that we need to spend some more time on that issue
to figure out where people can turn to for help in crisis as such.
Some people are seeking an alternative treatment vs the usual
treatments that doctors prescribe. I love to hear what people
are trying. I don't care how silly it is.. need is the mother of invention.
Some people need a friend to talk to them at 2am. It's pretty lonely
when you are up and miserable with legs that are acting up. Maybe
I will find that one other person who is suffering with me!
So what if it's tea and sympathy at 3am. Those of us with RLS
have few people in this world that take our symptoms seriously.
Some people tend to walk away from us because we are always
falling asleep, walking away in table conversations.
• in reply to
I so agree with you Yikes, I am always up and in pain from about 2 in the morning, my legs are better with the moving, but the pain is awful, and I feel quite poorly with it. I am glad to hear people's ideas, and also get fed up with some people talking down to others, I feel we should be able to post our ideas, as long as we are not trying to profit from them, with out being bullied by people who think they know it all, this site should be about caring and support!
Well done dragon for starting this thread, I hope that we can all have a nice discussion for a change.
Anyone heard of a book called "The Selfish Gene" it was written by Prof Richard Dawkins, it explains why we react in the way we do when there is an element of controversy or competition, or even as two separate people are approaching a que there is a strong urge to get there first, its the basis for most road rage etc etc, having the last word is another. All it needs is to just hold back until we have had a little think .
And then arm ourselves with the right weapons to defeat the enemy..........sorry that was naughty......lol
I totally agree with everything that has been said on this thread, and i do apologise if i have been part of the problem! In my defence , please read my previous blog...tea and sympathy!!! I stand by it! nuff said!
but please can we bring the conversation back to its original intention!!!!!!
I understand Chair...Im just trying to start again , knowing where we are up to so far, with all the other posts on this thread...it got a bit lost and confused!!!
Some or most of our debates turn into power struggles.
Some do actually know more than others because they have
been in these types of forums for a long, long time and have
collected information from at least a few sources that are
reliable. Take what you like away and leave the rest unless
you know that it is definitely false- then speak up and name
your source of information. =)
Be tactful in disagreeing with someone. Every single
person is unique and has different ways of reading words,
attitudes and understanding experiences. Since we are
online without seeing each other's attitudes, faces, tones,
something said could be taken very wrong...rather
than getting upset or quitting the forum, ask the person who
posted something that you do not understand.
Re reading what you wrote before you hit the submit my reply button
helps. It might have a tone that you didn't mean to imply.
Relevant conversation will happen if we remember to include how
what you are saying is related to RLS. It's perfectly fine to be friendly
and to share how it's affecting your life.(Right?)
Karen
• in reply to
Hi Yikes, your so right here, and sometimes, well a lot of the time, it makes me nervous to ask for help or advice, i just need straight forward answer's, the technical jargon isnt any use to me, im not medically trained, neither are a lot of us, so simple answer's generally work best for a lot of us, i think so anyway.
II agree that this is a serious forum for discussion, advice (and often very sound advice.) I am the first to admit that I don't submit very much but I read and take on board from a lot of knowledge out there. I think this is a fantastic site and just ignore any silly comments. This is not a 'Twitter' so lets just help each other wheneve.r we can.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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