Deleted questions, blogs and comments - a reminder of guidelines

My name is Rosie and I am an administrator for this forum and Vice Chair of RLS UK. Unfortunately it has been necessary to delete some comments today which were not in the spirit of the forum and also named individuals. On the message screen it asks that people posting comments:

•Be true and correct to the best of your knowledge and experience

•Be in the spirit of the site: to share, inform and support

Please don't do this:

•Name and shame identifiable individuals

•Be abusive, malicious or deliberately misleading

The comments made were not helpful to people suffering with RLS. We all find life more difficult than those not suffering with the condition and we need to be as kind, helpful, supportive and tolerant of each other as possible. Of course we sometimes annoy each other but we have over 700 members registered with this site and it is therefore inappropriate for them to read what should be kept between a handful of individuals. In the case of this forum, the old adage is true – if you can’t say anything nice, better to say nothing at all! Apart from causing offence, in extreme cases, comments about individuals could potentially result in people being sued.

For the record, the administrators of this site and the 6 trustees of RLS UK are volunteers. Most of us have jobs or families or both and it is sometimes quite tough to also fit in the RLS work too. We do not want to intervene in the forum more than absolutely necessary and frankly, we do not have the time. However, we do this because we feel strongly about raising awareness about RLS amongst the medical profession and the general public. We also want to do whatever we can to help and support those suffering with the condition (we are also sufferers ourselves). We are a small charity and we have a long way to go. The HealthUnlocked forum has been a huge success and a good source of information and support to many sufferers. We want to do all we can to ensure that it stays that way. Therefore can we ask that everyone respects the rules of this site and that messages sent to individuals are not likely to cause offence. If you have any issues which are not relevant to the wider membership, please bring them to the attention of the administrators in the first instance, rather than posting them as questions or blogs.

RLS UK (www.rls-uk.org), would be very grateful to hear from anyone who would be willing to help our charity, in whatever way you feel able. Many thanks, Rosie

vicechair@rls-uk.org

10 Replies

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  • Hi Rosie, not been on here for ages but I totally agree with you on this one. This site is to allow people to share the worries and stress of their condition and maybe to get help in some small way not as s sounding board for those that want to mouth off! I know I have been helped greatly at times by using it.

    In answer to your request for helpers, I have volunteered both at the AGM and a couple of times since and have expected to be contacted by our Chairman but have heard nothing and rather given up, I would still dearly like to help in any small way I can so please don't be afraid to ask.

    Regards

    SteveT

    PS I was a little dissapointed that my poem I posted on here last year didnt actually appear in the news letter as I thought it was going to. Oh well fame will have to wait!!!!!

    Look forward to hearing from you

  • Hi Steve,

    Thanks for your comments and support. Very much appreciated.

    Just spoken to Daragh, the Chair of RLS UK and he offers his apologies for not being in touch recently - he's been very busy at work. We would be so delighted to have any help you can offer - I'll send you a message privately to discuss. Daragh says your poem is going in the next newsletter! Fame at last!

    Many thanks

    Rosie (Vice Chair RLS UK)

  • Hi Rosie ~ I have found this site to be an entertaining and informative resource and one of my "must reads" every day! I would be willing to contribute assistance if the need is there. I'm not sure exactly what this entails but am open for suggestions. What kind of help would make life easier for you?

  • Hi Cathy,

    Thanks for our support. It's so nice to hear from members that this forum means as much to them as it does to me. I trully value what it offers and think that we are very fortunate that people give up so much of their time to help each other. As with Steve, I'll send you a message privately to talk about helping RLS UK - thank you so much for the offer!

    Best wishes

    Rosie (Vice Chair RLS UK)

  • Thank you for helping in this situation. it happens sometimes with all the sleep deprived people, so we can move on and erase this from our memory. :) Thanks, again!

  • I have only just joined healthunlocked and am finding it most informative, its nice to know you are not suffering alone

  • Sorry for getting off subject sometimes. Didn't intend for it to be

    taken as it was. Sleep deprivation makes me weird or "mouth

    off" as Steve put it. I didn't mean to bore anyone with my long

    posts about my job and what-not.

  • You don't bore me Yikes...I love your posts!

  • Im quite liking them !

  • Rosie, You could have just told me privately.

    I feel like an ass.

    Thank you.

    Steve.. I am leaving the site. (hate to annoy you)

    This site needs a leader to get relevant discussions going...

    To help guide people to know what to talk about.

    Anyone who is on here does suffer.. and that's what

    so much of it is about..that's why I went off subject...

    pain and agony gets depressive. (hearing it constantly)

    As far as medication goes, hearing it once from my doctor was

    plenty..he stays on top of developments..

    Good Luck to all of you...

    Hope that some real treatment comes along..

    Karen USA

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