RLS Survey - PLEASE READ & PLEASE TAKE PART

[Daragh]

Hi All,

It is now one week since I invited all of you to participate in an RLS survey for EARLS. I have received about 50 expressions of interest, which is much better than the figure we had at the end of last week but still disappointingly low, given that the forum has 622 users. About 8% of the forums users have agreed to take part. Some of you are members of RLS-UK and will therefore receive your copy of the questionnaire over the coming two weeks. However, this still leaves many, many forum users who will not have taken part and whose voices may therefore not be heard.

Completion remains voluntary but this is a unique opportunity for all of our voices to be heard. I regularly read comments by people on the forum complaining about the (low) level of RLS awareness among the public, politicians and medical practitioners. This survey is intended to address many of those concerns.

I sincerely hope we can get more of you to take part. It will only take a few minutes.... please help us to help you....

Background:

The European Alliance for Restless Legs Syndrome (EARLS) is an umbrella organisation of European patient advocacy groups, including RLS-UK. The Chair of RLS-UK is also a board member of EARLS.

EARLS is carrying out the largest study of RLS ever conducted, working with international RLS partners to develop the best possible picture of how RLS affects people's lives.

RLS-UK is assisting this research by coordinating the UK's input into the study. To date, over 4,000 people worldwide have taken part. While the study was previously carried out in the UK, the response rate was very poor. I hope we can now change this.

I would encourage as many of you as possible to take part and complete the questionnaire, even if you have done so previously. This is our chance to be better represented at a national and European level.

If you would like to take part, please email me [e-mail] and I will forward you a copy of the questionnaire. The document is in Excel (to make completion easier) so I would ask that you to complete the excel sheet and then return it to me via email. I will then collate the responses. If you cannot use Excel or do not have the software, please email me your name and home address and I will post a copy of the questionnaire to you.

RLS-UK members please note: This questionnaire will be sent later this month with your Newsletter so there is no need to complete the survey for the moment.

I hope lots of you will be willing and able to help and therefore request that you put the word 'QUESTIONNAIRE' in the subject line of your email as it will make processing your requests significantly easier.

Those from outside of the UK are also welcome to complete the survey though this can only be done electronically i.e. we are unable to post copies of the survey abroad.

Thank you in advance to all who participate. As always, please feel free to contact me [e-mail] if I can be of any specific assistance.

Daragh, Chair RLS-UK

[Hidden]

Its like pulling teeth it seems getting people to take part in this....!!!

I was hoping by flooding this site by you and me would raise the interest....

Again, come on PLEASE PLEASE people take part in this survey.

I have done mine and returned it, took me no more than 10 mins of my time.

Its no use just us moaning about our RLS, we NEED to HELP ourselves aswell, sitting back and doing nothing wont help us... So be proactive take part in this survey, dont leave this up to just a few who are helping..... WE NEED YOU....

[peterk]

Haven't received mine yet Daragh

[Daragh in reply to peterk]

Sent it on Monday Peter so hopefully will be with you today - second class post to keep costs to charity as low as possible!

[peterk in reply to Daragh]

Thank you very much Daragh. I will return it straight away. I understand about keeping costs low with the price of stamps these days. I will also be joining as you know.

[peterk]

It's so unrecognised that everyoneshould complete the questionnares. It's as Ellise says, like pulling teeth even to get help or this rotten condition recognized for what it is so I will be filling mine in straight away. If there is only a small response we will never change anything and it needs to change dramatically. That's my rant over with so come on every one fill it out for all of us.

[nightdancer]

EVERYONE SHOULD. There is no reason not to, and if yo sit back and think everyone else is going to do the work for you, then you are not helping yourselves at all. This is not one of US roups, so I cannot "bully" you into doing it, but come on, people! help others to help you. I, for one, do not want to hear about doctors who do not know, or do not care, and I know a lot of them, if more than 50 people cannot sign up for this. It is a simple questioannire. how ever, I do have to bring up one thing. LOTS of people with older computers do not have microsoft excel, me included, but the questionnaire was emailed to me wth the attachment. Then, I have to send it send it to my sister who puts it in a pdf file, which really is the easiest for everyone to open, and sends it back to me, and then I ca fill it out. so, there are legitimate reasons why some people cannot do these. But 50 out of 622 is pathetic. I am a health activist and it is what I do, so I know numbers count! <3

[Daragh in reply to nightdancer]

I have offered those with older computers the opportunity of my printing out the survey and posting it to them, with a stamped return envelope, so hope a lack of computer skills, software etc hopefully wouldn't be seen as an obstacle....

[Feeboo]

Where is the link to the survey?

[Daragh in reply to Feeboo]

No link. Please email [e-mail] and I will email you a copy. Thanks

[Feeboo in reply to Daragh]

OK will do!

[kadon in reply to Daragh]

I would like to fill in the survey please,email me a copy,kind regards Kay(ward)

[Hidden]

I emailed for a copy to be forwarded to me electronically but have not received an email back. Email was sent last Saturday or Sunday. Shall I email again or shall I just wait a bit longer?

[Daragh in reply to Hidden]

Please can you email me again as I am replying to emails as soon as possible after receiving them so you should have received a response by now. Please can you indicate your forum name in your email so I know it's you!

Thanks

[Kaarina Administrator]

It is all so disappointing. Perhaps people use this forum to pose their question, get information and never return again. They have to sign in, so perhaps in actual fact there are very few members who look in on a regular basis. I receive an email a few times a week letting me know the questions posed on this forum and the others that I belong to on HU. I presume this is optional and some members do not want to be bothered.

I am a member of the charity so am looking forward to receiving my questionnaire in the post with the newsletter.

Very sad but with my experience on other forums reluctance to get involved is a common phenomena.

Kaarina

[nightdancer in reply to Kaarina]

That is all very true, Kaarina. It happens in every group I have and on every msgs board. a person signs up for the group, asks 1 or 2 questions, and then their name just hansg there. I bet many many people who have signed up for this site have not even posted once, and a LOT more ask one or two questions and then they get an answer, and mever come back. But , it looks like they are still members. In some of my groups on yahoo, I require people to post at least once every 6 months, going back to 1997. that way yo know who is payng attention. Then sadly some people die, and I have no way of knowing unless I have contact informatiojn. so there is always a core group of members for every group on the internet that keep it going, and we know who our core is here. I doubt seriously that we have over 600 active members, and I know for sure some have signed up to just "keep an eye on things" shall we say? That is why I like my email groups. You have to give a valid email and it AS to show to to the group, plus you have to use something than other "jumpylegs", like your first name, in most cases. In a group like this that is so easy to sig up for, anyone can sin up and we have no idea who is "here" for the right reasons, or the wrong ones. This group setting shows it is very hard to keep track of members here, but we can tell who is posting and NOT posting by checking the directory. However it turns out, you never get the responses you want in a situation like this. Been doing it for years. The actual responses are much less than there should be. Like you said it is VERY common.

[peterk]

Hello Kararina. This is such a ridiculous situation. Everyone must send back their questionnaires. How can we change the minds of doctors who don't know about the condition and then, like me, moan about it. In the UK there are virtually no neurologists with an interest in thiscondition either so that needs to change. By the campaigning of the caharity and our help they can change things and help change our miserable lives when our RLS is ignored, mis diagnosed or you are viewed as just a nuisance. If people don't look then all I can say is if there RLS is controlled then great, but have the decencey to think of others who are suffering like hell and get involved. We should al try and help each other. You can change your settings here to receive email notifications daily and I have done that. So many people have been so helpful that I got the courage to battle like mad verbally at my practise because the condition had become excrutiating and the meds were adjusted. This site and the USA site helped because I placed anonymous postings under the nose of the doctor. I really won't tolerate it any more but I had to suggest the medication changes. This is wrong. Doctors need knowledge on this dreadful condition which wrecks lives, stops me, and it must some others from working so that I volunteer for a chaity now. Sleep deprivation, constantly moving would wear any one into the ground but none of us can become apathetic. So please return the questionnaires and please would everyone return their questionnaires. It's great there is a charity and it needs active members and support. Moan over.

[Kaarina Administrator in reply to peterk]

I am with you 100%, Peterk. I am sorry to hear that you are suffering so. I am blessed that my RLS is spasmodic but still I joined the forum, look in and am a paid up member of the charity. I am as angry/cross as you that the response is so awful.

Kaarina

[peterk in reply to Kaarina]

Hi Kaarina

I have just joined the charity and my questionnaire is on its' way back. I feel very angry that the response is so bad especially when we are on the receiving end of being told it's nothing etc or our GP's don't know about it, or it just means moving your feet and also that most neurologists also don't have an interest. Thanks for your empathy. It's nice to be able to chat with people who know what we go through. I hope that your RLS stays sporadic. Warm wishes to you.

[Hidden]

I agree that some people find this site, pose a question or blog, get the info they want or advise, then thats the last we hear from them. It should be a two way thing, we should help each other even if we have found the advise we want.... I dont like that some people take and not give back. Numbers count when we need to get things changed. Things wont change by themselves..... SO COME ON PEOPLE GET YOUR EMAIL ADDRESS TO DARAGH..LETS SEE IF WE CAN AT LEAST REACH 100 PEOPLE TAKING PART MORE WOULD BE NICER....

[peterk]

Hi Daragh. I received my questionnaire second post today and it's completed and on it's way back to you.

[arjay]

Hi Please send mine a s a p

Thanks

[Daragh in reply to arjay]

Please email me. My email address is [e-mail] - I will then send you the questionnaire.

Thank you!

[hugorune]

Hello, me again, dont know what is going wrong but I havent received a reply with the form. Did you receive my e-mail ? Think I am still doing something wrong

[Kaarina Administrator in reply to hugorune]

Are you sending your email requesting a questionnaire to: [e-mail] ?

[Daragh in reply to Kaarina]

Thank you Kaarina!!

[baccib]

HOW DOES ONE GET THE SURVEY. I HAVENT RECEIVED IT BUT WOULD LOVE TO JOIN IN

[Kaarina Administrator in reply to baccib]

If you would like to take part, please email Daragh: [e-mail] and he will forward you a copy of the questionnaire. The document is in Excel (to make completion easier) so he asks that you complete the excel sheet and then return it to him via email. He will then collate the responses. If you cannot use Excel or do not have the software, please email him your name and home address and he will post a copy of the questionnaire to you.

Kaarina

[Daragh in reply to Kaarina]

Thank you Kaarina!!

[Kaarina Administrator in reply to Daragh]

A pleasure, Daragh, anything to make this task easier for you.

Kaarina

[bedith6]

I want to take part and have sent two e-mails to your address but each time they have come back to me. Can you send questionnaire via my e-mail please?

beryl@[e-mail]

[Daragh in reply to bedith6]

Hi, please can you confirm that it is [e-mail] ?

Thank you

[Daragh in reply to bedith6]

Hi there

Please can you confirm this email address? Is is meant to read [e-mail]?

Thanks

[bedith6]

no dot after beryl. [e-mail] Thanks

[Daragh in reply to bedith6]

You should now have received an email!!

Thank you

[hugorune]

Hello Daragh, cant seem to sort out the e-mail So I have sent you another e mail with my home address, hopefully it will work this time x

[Daragh in reply to hugorune]

Received with thanks! Will get the survey off to you in today's post!

[Hidden]

Is it too ate for this ?... I have only just joined this blog group .

[BBGuess45]

I don't live in the UK, which really shouldn't matter, unless it affects your funding. I'm early 70, male, have had RLS since being hit by a bus 9/1/2004. I live in Portland Oregon, USA. I'd like to do whatever I can to help find a successful treatment for as many people as possible to Stop this curse, that robs you of Quality of life, by preventing sleep, interrupting times of peace with not just the urge to move, but in my case violent spasms that kick either leg into the underside of my desk, or in bed into my forehead.

Whatever I can do, count me in. My family is from Ireland in the 1840's if that helps. My paternal grandmother claimed Isle of Man relatives. My Father's side of the family two Day families joined. My mother's side of the family, the O'Briens and the Robbs, well...I'm celtic. I have drunk Guinness Stout. I'm qualified

Brian E Day

[e-mail]

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