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!

Daragh profile image
82 Replies

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...

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Daragh profile image
Daragh
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82 Replies
Pam34 profile image
Pam34

Done

Kaarina profile image
KaarinaAdministrator in reply to Pam34

Thank you Pam. It is appreciated.

Leelee49 profile image
Leelee49

I did it on fb and shared it there.

Kaarina profile image
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.

cicek profile image
cicek

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 profile image
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.

Jose651 profile image
Jose651

Done last week Kaarina,

J☘️

Kaarina profile image
KaarinaAdministrator in reply to Jose651

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

Pippins2 profile image
Pippins2

Done few days ago x

Kaarina profile image
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.

Pippins2 profile image
Pippins2

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 profile image
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 profile image
KaarinaAdministrator in reply to

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

redmaple-5 profile image
redmaple-5

Survey completed 🙂

Kaarina profile image
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.

martino profile image
martino

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

Kaarina profile image
KaarinaAdministrator in reply to martino

Hi martino, thank you. Your support is appreciated.

Inallfairness profile image
Inallfairness

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

Kaarina profile image
KaarinaAdministrator in reply to Inallfairness

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

Jelbea profile image
Jelbea

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 profile image
KaarinaAdministrator in reply to Jelbea

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

Lenilatt profile image
Lenilatt

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

Kaarina profile image
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.

Parminter profile image
Parminter

I am in Africa, so do I count?

Kaarina profile image
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 profile image
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 profile image
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 profile image
Parminter in reply to Kaarina

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

hausbauer profile image
hausbauer

Done it too

Kaarina profile image
KaarinaAdministrator in reply to hausbauer

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

rkatt profile image
rkatt

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 profile image
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! :)

Palamino profile image
Palamino

Did it a few weeks ago

Kaarina profile image
KaarinaAdministrator in reply to Palamino

Thank you Palamino, it is much appreciated.

Svengolly profile image
Svengolly

Y is there no US respondent link ?

Daragh profile image
Daragh 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.

Joolsg profile image
Joolsg

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 profile image
KaarinaAdministrator in reply to Joolsg

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

EveC profile image
EveC

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

EveC

Kaarina profile image
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.

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

Daragh profile image
Daragh in reply to

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

in reply to Daragh

Definitely! Will email you right away!

Kaarina profile image
KaarinaAdministrator in reply to

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

peterfromlondon profile image
peterfromlondon

done !

Kaarina profile image
KaarinaAdministrator in reply to peterfromlondon

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

nightdancer profile image
nightdancer

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.

Daragh profile image
Daragh in reply to nightdancer

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

nightdancer profile image
nightdancer in reply to Daragh

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

Kaarina profile image
KaarinaAdministrator in reply to nightdancer

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

Suzyjewel profile image
Suzyjewel

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 profile image
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. :)

Felixstowe profile image
Felixstowe

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

Kaarina profile image
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. :)

Lucyjane29 profile image
Lucyjane29

Done

Kaarina profile image
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.

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 profile image
KaarinaAdministrator in reply to

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.

Daragh profile image
Daragh in reply to

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.

Daragh profile image
Daragh in reply to

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!

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

Kaarina profile image
KaarinaAdministrator in reply to

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

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

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 profile image
KaarinaAdministrator in reply to

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. :)

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 profile image
KaarinaAdministrator in reply to

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

Daragh profile image
Daragh in reply to

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!

in reply to Daragh

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?

Daragh profile image
Daragh in reply to

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

in reply to Daragh

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 profile image
KaarinaAdministrator in reply to

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! :)

joyce234 profile image
joyce234

I completed the survey via Facebook

Kaarina profile image
KaarinaAdministrator in reply to joyce234

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

joyce234 profile image
joyce234

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

Kaarina profile image
KaarinaAdministrator in reply to joyce234

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

healthunlocked.com/rlsuk/po...

Jose651 profile image
Jose651

Bump.

Kaarina profile image
KaarinaAdministrator in reply to Jose651

Thank you Josie. :)

Kaarina profile image
KaarinaAdministrator

Bumping up this important thread.

Lapsedrunner profile image
Lapsedrunner

Done!

Gmc54 profile image
Gmc54

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

Kaarina profile image
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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