The Chair put up a number for the HELP line. I am just wondeing who answers it the hours it is operable?
Who answers at the HELP line at the R... - Restless Legs Syn...
Thank you for answering me, PinkEllie. I used to get asthma and bronchitis attacks that would put me in the hospital, so be good and do what they tell you. I am one of the 34 ( I think) US people on here, so I like to keep up with what everyone is doing, as have a lot of people from the UK in my online support groups on yahoo and elsewhere. It is good to keep up with the news on both sies of the pond. Thanks! IT certainly sounds as if Bev is qualified, from what Elisse an you said, so it is a good service to be able to provide.
Firstly may I apologise for the delay in answering your query; I am currently in hospital following a severe asthma attack last Monday, and as such I have been relying solely on my mobile phone signal to get online – a bit hit and miss!
So, back to your question Bob, I know this for several reasons, yes I am a trustee -if you look at my profile on here you will see that and a very proud one I am too. The charity does not have staff, it is too small a venture for that; the people in the key roles and the trustees all do this on a voluntary basis and the majority of us hold down full time employment as well.
The opening times of the helpline are featured regularly in the newsletter which goes out to members of the charity. Our helpline co-ordinator has been pivotal in the transition of the group from a mere patient support group, to the registered charity we are today, and for a long while her details were in the public domain, particularly on our very old website. She has also in the past written articles and updates for the newsletter on the progress of the helpline, and shares a lot of the hints and tips that people call in with each week, not to mention the interviews and presentations she has given over the years in the very, very early days of the Ekbom Support group before RLS-UK/ESA was even established. Does this help?
Oh, sorry to hear of your asthma attack, hope you are feeling better now PinkEllie.
The RLS support group has been around many many years, before Bev, it was Elieen who actually started it in her front room and tried to help many RLSers over her years, she did everything, from phone calls to sending info out, which she did by herself. I contacted her when i got my first computer and she sent info out to me. It got big, and she just couldnt cope anymore and her age was against her. Then Bev took over, the support group became more online for help. It has come a long way from back all those years ago...
Indeed it has, I first met Bev during the handover from Eileen from the 'old' group to the new one, I became involved via my undergrad research and realised it was more than just thesis material. Which is why I graciously accepted the offer from the original board of trustees to join them in helping raise awareness. I do believe the original group with Eileen was actually started in 1985 and it has snowballed, we do what we do because RLS impacts on our lives and we want to help others. It is lovely to hear from 'an original' Elise, who has been a witness to where we have evolved from, being so wound up in it you tend to forget what progress has been made because you are constantly striving to do more! 'WE' still have a long way to go to catch up with others ( ironic really when you consider the first group started here!!!) But we will make it I'm sure
And thank you, I am a bit better, but still a way to go yet, hoping for home tomorrow but I need to behave myself! Xxxx
Thanks for the reply, its just that some members of the board do come on discussions without indicating their position and therefore misleading people. I thought you were it just confused me that you make it clear you are yet use a screen identity and not your own name despite being so proud of your position on the board? Would it not be easier for all board members to use their own names and positions when posting so that we understand who is speaking ?
Well goodness me, I didn’t think a simple comment would lead to such confusion!!! My sincerest apologies…
I would like to respond to your points in turn if I may Bob?
I use a screen identity that I use on many forums, simple to remember, nothing to hide, nothing to gain, nothing sinister at all, a quirky take on me, Ellie the individual, as I was very active on the old forum (and this was my username then!) and helped people make the move across to here, it never entered my head for one second that I would need to make newer forum members aware of my work history with the group. Maybe I should have a tag line – but do you not think that may appear rather pompous – not at all in my character!
I AM extremely proud of my position on the board, and anyone that knows me in the capacity of my work with RLS-UK, or privately would testify to that. I am hardly hiding behind an identity? I have the RLS-UK tag next to my name for ADMIN purposes, it has been written in my profile since I set it up on HU, AND I use an actual photograph of myself as an avatar – I don’t see how me using a screen name rather than my full official name could be misleading to anyone, especially if they are so interested in what I am saying they can view my profile – and see then the role I hold?
In addition to this I have very recently appeared in the (albeit local!) newspaper, full name, and photo, talking about my RLS and informing that I am on the board of trustees – a link to which has been provided from here and the FB page???
Maybe with hindsight, I could have re worded my response to make it obvious that I was a trustee, but at 1am in hospital, unwell, I was just trying to be helpful? If I have misled ANYONE at all, please note THAT was never my intention! I have posted at length in other questions, very detailed responses, especially in regards to the question of whether RLS is a sleep disorder, and this has NEVER EVER been raised as an issue before?
I understand where you are coming from Bob with the request that board members use their own names and positions when posting, however I personally do have rather an issue with that; you see HU is not just for RLS, it relates to Health in general. I have other health conditions (which I also view the pages in HU for) and sometimes I PERSONALLY have a need to remain quite closed and guarded against my posts, given fears/questions/concerns that I have and advice that I am seeking. My health is my business, and I share ‘some’ information readily, other stuff I don’t and as a trustee or not to a charity – that is my prerogative.
Another reason for not publicising my ‘own name’ – now call me paranoid, but throughout my teacher training, we have been encouraged to use screen identities to protect ourselves from students and parents. It is a sad FACT that teachers can be targeted by students and parents alike and personal information gathered about them. That is why all my usernames are the same, and I have the tightest security available on my social networking sites.
Furthermore, I have a young family, I want to protect them. Sadly in this day and age, it is all too easy for sad unsavoury characters to gather personal information on individuals and target home addresses, like I say, maybe that’s paranoia, but it is not a risk that I am willing to take with my family.
My sincere apologies, if my 3 line reply has caused any confusion to anyone. I am REALLY sorry, but the information I provided is freely available to anyone that wants/needs it on our main website. I just think it is far more polite to answer a direct question; from Night Dancer originally and now from you Bob and explain in full rather than posting a link to the info on the website – maybe I just have too much time on my hands in hospital who knows?
Hopefully that will change when they discharge me tomorrow ( if I can behave myself tonight that is!)
It should need need us to look it up should it?
I am not asking for your address, phone , number or email account so privacy is not threatened is it?
Clarity should need no explanation, should it?
I understand you are in hospital \ recovering, however when you choose to reply that should not be an excuse. I didn't put any time pressure on your to reply
If as you say your paranoid about privacy why then take on a position / role that requires disclosure in certain circumstances? Certainly more disclosure than I suggested on here? Ellie Trustee RLS UK would make it all very clear and I cannot see a single valid objection to RLS staff etc doing this?
I only request this because of the behaviour of a trustee on this very site!!!
When I mentioned the offence to RLS UK, I was told they were taking legal advice about my questions!!! This was 3 months ago and despite a request for an up date not a word form RLS UK!! Shameful!!!????
You wrote: "I AM extremely proud of my position on the board, and anyone that knows me in the capacity of my work with RLS-UK, or privately would testify to that. I am hardly hiding behind an identity?"
How would you feel about a fellow trustee/board member/employee hiding their identity on here and attempting to bully a user into following the 'party line"?
If there was such a person don't you think they should at the very least apologise? And if they won't then surely RLS-UK should?
Everybody makes mistakes, but failing to apologise for a mistake is just plain wrong.
I think and its only view, that trustees and the like when on the site should indicate their position and therefore make it very clear that any opinions come form the view point.
Some have abused internal knowledge on this site without even making it clear on their profile!!?!?
Is that correct behaviour?
Bob, even i know that information...
and me ...
To stand up for Bob for a minute...
He is absolutely right that in the past an individual linked to the charity has been in this forum under an assumed name. They attacked him for criticising a decision made by the charity.
After the issue was raised the account swiftly disappeared and there was nothing but silence.
PinkEllie has a 'RLS-UK' box and this is a good thing and all staff/trustess should have. The person who 'had a go' at Bob did not use one on that account.
It is to Bob's credit that he has not named the individual. I certainly would have.
Chin up Bob!