IF YOU DON'T HELP US, WE CAN'T HELP YOU! - Restless Legs Syn...

Restless Legs Syndrome
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IF YOU DON'T HELP US, WE CAN'T HELP YOU!

EARLS_President
EARLS_PresidentAdministrator

This forum has over 10,000 followers across Europe but only a small number of you have taken part in the European Alliance for RLS (EARLS) Patient Survey 2018. We are asking for 5-10 minutes of your time, that's all. If you don't help us, we cannot help you.

We need many, many more responses. We need you to share the survey with your forum friends, encourage each other to complete it, share it with your family (if any of them have RLS), share it on your Facebook page etc, bump this post so others see it, 'Like' the post so it stays at the top of the RLS forum topics. This is the third time we have had to post this request, isn't that a shame?

In short, we need your help. For years we have heard people (wrongly) complain that no research is being done. This is research. Its findings will be shared with senior influencers and policy makers across Europe but only if we have a sufficient sample size to be able to draw some conclusions. Without your help and participation, we will fail. It's up to you, we need you to make it happen.

The survey takes about 5-10 minutes to complete and your answers will be completely anonymous. It is currently open to residents of the UK, Ireland, France, Finland, Netherlands, Austria and Germany.

Thank you

earls.eu/earls-patient-surv...

114 Replies
oldestnewest

Done

Kaarina
KaarinaAdministrator
in reply to Pam34

Thank you Pam. It is appreciated.

I did it on fb and shared it there.

Kaarina
KaarinaAdministrator
in reply to Leelee49

Thank you Leelee for letting us know that you have completed the survey via FB and shared it too. It really is appreciated.

I did mine almost immediately and it took no time at all. Come on guys, we desperately need this help so please please complete the survey.

Kaarina
KaarinaAdministrator
in reply to cicek

Thank you cicek for your support. It is appreciated. As you rightly say we desperately need forum members help with this and the survey does not take long to complete.

Done last week Kaarina,

J☘️

Kaarina
KaarinaAdministrator
in reply to Jose651

Thank you Jose, for completing the survey a good few days ago Your support is very much appreciated.

Done few days ago x

Kaarina
KaarinaAdministrator
in reply to Pippins2

Thank you Pippins. :) I well remember that you have and thank you for replying to this thread too as it bumps up it up again. Your support is appreciated.

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Kaarina
KaarinaAdministrator
in reply to Hidden

Bumping up this important thread.

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Hidden
in reply to Hidden

The Norwegian translation has been sent to Daragh, so hopefully that will help boost numbers upon publication.

Kaarina
KaarinaAdministrator
in reply to Hidden

You are a star, Jess. Thank you, thank you. :)

Let's hope so. We certainly need more RLS sufferers to complete the survey.

Hidden
Hidden
in reply to Kaarina

Good morning! Before I took it to my Norwegian teacher for proofreading I warned her how difficult some of the questions might be for her to swallow (heck, they’d be difficult for anyone to swallow!). I was right to warn her! She was fine and all, but did say «gosh Jessica, this disease is gruesome!»

Kaarina
KaarinaAdministrator
in reply to Hidden

Good morning to you Jess, too. :) You were wise to warn your Norwegian teacher about some of the content. Please pass on our thanks to your teacher too. It was very kind of her to take the time to proofread the survey. I am sure you did a perfect job though. You have done a very good deed on behalf of those suffering with RLS. Thank you so much. Well done. :)

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Hidden
in reply to Kaarina

Will do! She was happy to help! She was impressed with my translation and only needed to make a few grammatical corrections. We had fun meeting together.

Kaarina
KaarinaAdministrator
in reply to Hidden

What a great team you both are. Lovely to hear you had fun too. :)

EARLS_President
EARLS_PresidentAdministrator
in reply to Hidden

Thank you so much, Jess3468. I have now placed the Norwegian translation onto the survey platform and have contacted the Norwegian RLS group for their agreement for it to be 'made live'. I will let you know as soon as it is ready to publish. In the meantime, thank you so much for all of your help!

Hidden
Hidden
in reply to EARLS_President

You’re very welcome!😀 Let me know if there is anything else I can do.

The preview link you sent me won’t let me go past the first several questions, saying that the starred questions need an answer before continuing. Should I answer the questions just so I can preview the entire thing?

EARLS_President
EARLS_PresidentAdministrator
in reply to Hidden

Yes, please answer the questions as you normally would and yours will be the first Norwegian response!

Hidden
Hidden
in reply to EARLS_President

Can you please get back in and go to question 8. Where it says eks., can you put an f. in front of that (it should read «f. eks.» instead of «eks.»).

In English, that is the Norwegian short for «for example» instead of just «example»

Thanks!

Kaarina
KaarinaAdministrator
in reply to Hidden

So you should be the first to complete the survey, Jess. It is because of you and your Norwegian teacher that this translation has happened today! :)

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This is important! !We need research please complete this survey. We have all been grateful for RLS. UK in ones way or another over the years so now it is your chance to make a difference

Kaarina
KaarinaAdministrator
in reply to Pippins2

Thank you Pippins. This survey is extremely important, as you quite rightly point out. It is RESEARCH.

We need your help and participation in this survey if you are a resident of the UK, Ireland, France, Finland, Netherlands, Austria and Germany.

It take 5 - 10 minutes of your day/night. That is all.

Done a few days ago. :) I have posted it to the RLS group i am co-admin too.

Kaarina
KaarinaAdministrator
in reply to Elisse2

Thank you so much for your support, Elisse and for posting it on another RLS group too. We really appreciate this.

Survey completed 🙂

Kaarina
KaarinaAdministrator
in reply to redmaple-5

Thank you so much for taking the time to complete the survey, redmaple-5 and for letting us know. It is very much appreciated.

Writing rather smugly I totally agree. We are in this together!

Kaarina
KaarinaAdministrator
in reply to martino

Hi martino, thank you. Your support is appreciated.

Done immediately ...It takes JUST a few minutes....so C,MON people...✌❣

Kaarina
KaarinaAdministrator
in reply to Inallfairness

Thank you Inallfairness. You are so right - it only takes a few minutes. ;) Thank you for your support.

Did mine straight away. As others have said we are all grateful for the help on this forum so it’s our turn to help. On a lighter note so many of us are awake during the night we have plenty of time to respond lol

Kaarina
KaarinaAdministrator
in reply to Jelbea

Thank you Jelbea for your kind words. I like your sense of humour too. ;) Thank you for your support.

Yes,I completed the survey last week. Didn't take very long, mainly ticking boxes.

Kaarina
KaarinaAdministrator
in reply to Lenilatt

Many thanks Lenilatt, for completing the survey so promptly and you are correct, it does not take many minutes out of one's day/night.

I am in Africa, so do I count?

Kaarina
KaarinaAdministrator
in reply to Parminter

Hi Parminter,

The survey is currently open to residents of the UK, Ireland, France, Finland, Netherlands, Austria and Germany

Parminter
Parminter
in reply to Kaarina

What a pity. We also have RLS, and very little knowledgeable help for it. So we have to DIY a lot!

Kaarina
KaarinaAdministrator
in reply to Parminter

It is a pity Parminter. I agree. At least you found the forum some time ago and you are most welcome.

Parminter
Parminter
in reply to Kaarina

Thank you, Kaarina, for your work for all of us. It is indeed a wonderful resource.

Done it too

Kaarina
KaarinaAdministrator
in reply to hausbauer

Thank you hausbauer for completing the survey and for letting us know. It is appreciated.

It’s self destructive not to do the survey. Please do the survey. For you know what’s sake do the survey. People, me included, are irritated when doctors say RLS is psychosomatic. To refuse to do the survey is 24 carat masochism. It’s an auto-da-fey. I don’t want to put too fine a point on this but please do the survey. The survey. The survey. Not to do the survey is like refusing to take a new medication that really helps. So please...

Kaarina
KaarinaAdministrator
in reply to rkatt

Wow, thank you rkatt. Agreed. This survey is SO IMPORTANT. Everyone eligible to complete the survey is strongly encouraged to do so. It makes perfect sense! :)

Did it a few weeks ago

Kaarina
KaarinaAdministrator
in reply to Palamino

Thank you Palamino, it is much appreciated.

Y is there no US respondent link ?

EARLS_President
EARLS_PresidentAdministrator
in reply to Svengolly

The survey is only open to countries who are members of the European Alliance for RLS, sorry. We hope to work with our U.S. colleagues in the future to develop an international survey.

Brilliant Kaarina. I’m so grateful for all the work RLS UK do on this forum. It has literally been a lifesaver for me.

The USA RLS Foundation recently did an educational push in the USA to raise awareness of Augmentation and the use of opioids. We need to raise awareness here in Europe so

COME ON PEOPLE- DO THE SURVEY.

I really hope we get thousands of replies.

Jools

Kaarina
KaarinaAdministrator
in reply to Joolsg

Thank you Joolsg for all your support. We are most grateful. :)

There is no Flag for Australia, so unable to do the survey.

EveC

Kaarina
KaarinaAdministrator
in reply to EveC

Hi EveC,

You are correct, the survey is currently only open to residents of the UK, Ireland, France, Finland, Netherlands, Austria and Germany. Thank you for taking the time to open the link. It is appreciated.

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Hidden

Helping out here by bumping this up. Do you know when the Norwegian folk can complete the survey?

EARLS_President
EARLS_PresidentAdministrator
in reply to Hidden

Unfortunately we do not have a Norwegian translation Jess, so we have not been able to publish the Norwegian translation. Might you be able to help me with it? Would only take about 20 minutes of your time ((I hope!). If so, please email me chair@rls-uk.org and we can progress things as soon as possible. Many thanks, Daragh

Hidden
Hidden
in reply to EARLS_President

Definitely! Will email you right away!

Kaarina
KaarinaAdministrator
in reply to Hidden

What a star you are, Jess. :) :) Thank you. :)

done !

Kaarina
KaarinaAdministrator
in reply to peterfromlondon

Thank you peterfromlondon, for your support. It is appreciated.

A lot of us cannot take this survey because we are in the states. I agree, though, would be nice if more participated and do not expect others to do it all. I wish I could do the survey.

EARLS_President
EARLS_PresidentAdministrator
in reply to nightdancer

Thank you nightdancer. We hope those who can do the survey do so.

I will post it in facebook groups. I have a lot of people from the UK and across the pond.

Kaarina
KaarinaAdministrator
in reply to nightdancer

That would be brilliant. Thank you nightdancer for your support. It is appreciated.

Hi tried to complete survey but can’t seem to access it, will try again soon. Thankyou for this site, it’s been so important to me for the advice and support, thankyou

Kaarina
KaarinaAdministrator
in reply to Suzyjewel

Hi Suzyjewel,

Thank you for your kind words.

I am not quite sure why you are having problems in accessing it. Perhaps you could try a different browser? Hopefully you will be able to complete the survey soon. :)

Done as soon as it popped up on my feed on FB, shared also.

Kaarina
KaarinaAdministrator
in reply to Felixstowe

That is a brilliant reply to read on this rainy Saturday afternoon, Felixstowe. :) Thank you for completing the survey and for letting us know. :)

Done

Kaarina
KaarinaAdministrator
in reply to Lucyjane29

Thank you for your support, Lucyjane and for letting us know that you have completed the survey. It is much appreciated.

Hidden
Hidden

The Norwegian translation has been done, but needs to be checked before I send it back to Daragh. This will be done on Tuesday.

Am wondering, though, how word gets out to the Norwegian public (or any non-UK public, for that matter) that there is a survey out there.

Kaarina
KaarinaAdministrator
in reply to Hidden

Hi Jess, that is great news. Thank you so much for doing this for us as it must have taken up quite a bit of your time. I am sure Daragh will be able to answer your question.

EARLS_President
EARLS_PresidentAdministrator
in reply to Hidden

Hi Jess3648, we are relying on the respective national groups to help us publicise the survey. For example, the French RLS organisation heavily publicised the survey and we already have 631 responses from France, and Germany have helped us achieve 215 responses etc. The figures go up every day.

EARLS_President
EARLS_PresidentAdministrator
in reply to Hidden

Hi Jess

I know you sent me a response but I cannot see it on the thread. Please can you send any feedback to me via email - chair@rls-uk.org

Thanks!

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I completed the survey via Facebook

Kaarina
KaarinaAdministrator
in reply to joyce234

Thank you Joyce, for completing the survey via FB and for letting us know. :)

No problem. Will there be Christmas cards for sale again this year??

Kaarina
KaarinaAdministrator
in reply to joyce234

Indeed, there is a RLS-UK Christmas card on sale again this year, joyce. :)

healthunlocked.com/rlsuk/po...

Bump.

Kaarina
KaarinaAdministrator
in reply to Jose651

Thank you Josie. :)

Done!

Completed this today. Hope it’s not too late.

Kaarina
KaarinaAdministrator
in reply to Gmc54

Thank you so much for completing this important survey. It is much appreciated and it is not too late. :)

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