ALL USERS - URGENT - PLEASE READ

Hi All,

Further to my invitation on Tuesday for forum users to participate in an EARLS survey, I have received 16 expressions of interest. This forum currently has 614 users, which means that just under 3% of our forum users have indicated thet they can/will take part. Those who have contacted me to date will have been emailed or posted the questionnaire as requested.

Completion of the questionnaire is of course 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....

REMINDER OF TUESDAY COMMENT ON FORUM:

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 chair@rls-uk.org 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 chair@rls-uk.org if I can be of any specific assistance.

Daragh, Chair RLS-UK

30 Replies

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  • Thats dreadful....!!

  • that's blumming awful .... would have thought everyone would jump at the chance to do the questionnaire .. is there no way you could multi email them all Daragh in one go ?

    mines just this min come

  • Hi Daragh,

    The Excel format might be a bit off-putting for those with limited computer skills. Perhaps, If we could get those people to send you a prepaid envelope to keep cost down, you could send them out a "hardcopy".

    Cheers

  • Hi there

    I have offered above to do exactly that and a few people are taking me up on the offer. Hopefully a few more will also do the same...

    Thanks

    Daragh

  • But of course I want to answer the questionnaire

    Kolbrun

  • Please can you email me chair@rls-uk.org and I can send you a copy of the questionnaire...

    Thank you!

  • Hello Daragh, I emailed you straight away after reading the other day. I haven't received anything from you yet. Maybe it went to my spam and I missed it :( I will try again now x

  • Hi there

    Please can you try again chair@rls-uk.org and confirm here that you have received it!

    Many thanks

  • Hi

    I tried again, didnt get anything from you x

  • Hi there

    I have no idea why I am not receiving it. I received about 10 requests yesterday! Please can you email me your email address via the contact/message tab on this forum. We'll get there one way or another!

    Thanks

  • Hi there

    I have no idea why I am not receiving it. I received about 10 requests yesterday! Please can you email me your email address via the contact/message tab on this forum. We'll get there one way or another!

    Thanks

  • I will happily take part

  • Please can you email me chair@rls-uk.org and I can send you a copy of the questionnaire...

    Thank you!

  • I am willing to take part, but have not recieved any questionaire. Could you e mail me a copy please !!

  • I'm sorry but I cannot email you a copy as I don't have your email address. Please can you email me chair@rls-uk.org and I will respond with a copy of the questionnaire.

    Many thanks

  • I'm sorry but I cannot email you a copy as I don't have your email address. Please can you email me chair@rls-uk.org and I will respond with a copy of the questionnaire.

    Many thanks

  • Oh dear the apathy is abysmal, similar to when we were asked to distribute posters in our local area to promote awareness of RLS. Hey ho! I have only just seen this as I do not log on so often as my symptoms are tolerable - I am one of the lucky ones and very grateful.

    I am a member of RLS-UK and will be posting my renewal subs in the next day or two. I shall wait for the newsletter with the attached questionnaire.

    It is a shame more people on here are not paid up members RLS UK. Ooops, cheeky, aren't I ?

    Kaarina :)

  • Hi Daragh

    I have just joined. Please can you email me a questionnaire. I have emailed you. Thanks PK

  • Hi there

    Where can I find the questionnaire ?

    Kolla

  • Hi there I will ask again

    and try to rephrase the question. Since I have sent my E-mail address to two chairadresses

    I am asking again how do I find the questionnaire?

    all the best

    kolla

  • Hi Kolla

    I hope you have received a questionnaire by now. If not, email Daragh at the following email address:

    chair@rls-uk.org

    He will then send you a questionnaire.

    To receive a questionnaire you need to email Daragh.

    Kaarina

  • Hi. Please put me on your questionnaire list, if it's not too late

  • Hi there

    Please can you email me. Send an email to chair@rls-uk.org and I will respond. You need to email me for me to send you the questionnaire!

    Thanks

  • Because of my RLS, I seem to have too much time on my hands staying home and all. Is there someway I could help with this survey in contacting people, etc. Let me know. I would be a dedicated person to the cause. Thanx Bacci

  • That is a very kind offer Bacci and very much appreciated. We appear to have enough resources working on it at the moment but I hope it would be ok with you if I keep you in mind should we need more help in the future?

    Thank you once again.

    Daragh

  • OF COURSE. JUST SO YOU KNOW MY CAREER AS A MOTIVATIONAL SPEAKER AND TRAINER ALSO INVOLVED CONDUCTING P.R. FOR MY OWN COMPANY AND MAKING PRESENTATIONS FOR VARIOUS ORGANIZATIONS. I ALSO HAD A LOCAL T.V. SHOW IN MY HOME TOWN FOR 14 YEARS. I EVEN DID A YOU TUBE TO RAISE AWARENESS FOR THE NEED OF BONE MARROW DONATIONS. SO JUST KNOW THAT I AM HERE AND WILL DO ANYTHING I CAN TO HELP THIS EFFORT.

  • I will be more than happy to take part. I have only just joined and live in France but you are more than welcome to send the survey via my email address.

  • I haven`t received the survey yet - if you still want me to fill one in, please send me the form and I`ll do it at once.

    Thanks for all the help you are giving us

  • Hi I would have gladly taken part as would my family who suffer with this, however I have just joined so its too late now I guess

  • QI live in US and am not very competent with e mail at all.Also there is no date so do not know when your survey is. Would very willingly fill one in I have had RLS for 50 Odd years which is now severe. Retren. gilltall@icloud.com

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