Are you looking forward to the Channe... - Restless Legs Syn...

Restless Legs Syndrome

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Are you looking forward to the Channel 5 documentary?

Daragh profile image
23 Replies

We have finally succeeded in organising a one-hour tv programme which is entirely dedicated to RLS. This is one of our most significant achievements to date but there is much more work to be done. We hope you are all looking forward to seeing it.

Getting to this point has been a slow process. As a small charity we would not have been able to do this without the support of our members. Membership fees and occasional kind donations from private individuals are what keep us going.

Despite having over 11,000 followers on Facebook and almost 6,000 users of this forum, we only have about 200 paid members (at £15 per annum this generates £3,000 per year), which means what we are limited in what we can do to raise awareness of RLS. If only ten of you reading this joined us, our membership funding would be increased by 10%.

If you would like to help us continue our work, please consider joining us. We rely on your membership fees and donations to do our work.

You can join online at rls-uk.org/membership

Thank you

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Daragh profile image
Daragh
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23 Replies
Kaarina profile image
KaarinaAdministrator

LOL Too right, I am looking forward to the one hour TV programme on Tuesday. :) I can hardly believe that this is going to happen! I keep pinching myself! ;) This is such an exciting, step forward for us all. I am proud to be a paid up member of RLS-UK. :)

Joolsg profile image
Joolsg

Wow, only 200 paid up members.

I joined recently using the on line form which was very easy. Hopefully, now there is a way to join online rather than requesting and filling in a form via snail mail, we will see more people joining.

Well done in getting the programme made and broadcast. I am really looking forward to it and have told everyone, including my GP and neurologists, all about it.

Jools

Pippins2 profile image
Pippins2

Thankyou for the reminder about membership, I had let mine lapse due to caring for my mum but I will certainly rejoin and would urge everyone to please join. We need RLS -UK they are the only body fighting for us. Does anyone have a copy of the latest newsletter they would consider posting on to me once they have finished with it as I have a piece on the back page which I would like to see? Thankyou x

Joolsg profile image
Joolsg in reply to Pippins2

Happy to send on to you Pipps, so either email me or send me your address through messages,

Jools x

keiralee profile image
keiralee in reply to Pippins2

Yes received my copy today Pipps. Brilliant article and a nice pic of you. I see Jools has offered to send you a copy but any probs let me know x

cicek profile image
cicek

I will definitely pay for membership and will see to that very shortly. Meanwhile, I have been visiting at the hospital today and mentioned to nurses and doctors about the programme on Chanel 5. My sister, who is the patient, also mentioned it to me as she knows I suffer badly and had seen the advert!! Let's hope plenty of other people have too. I will carry on spreading the word until Tuesday. Can't wait to see it.

nightdancer profile image
nightdancer

My groups are bouncing off the walls waiting for this. I and my team have done LOTS of publicity for this, and people are excited!! :)

Pippins2 profile image
Pippins2

Thankyou I have Jools sending me a copy of the newsletter x

Kaarina profile image
KaarinaAdministrator in reply to Pippins2

RLS-UK have posted you two copies of the newsletter today, Pippins. Thank you so much for your contribution. It is very much appreciated.

Pippins2 profile image
Pippins2

Thankyou I am sorted! X

murph50 profile image
murph50

Great news about the TV program, hopefully will raise awareness to how RLS affects people's lives. I am a paid member and it's worth every penny, hopefully more people will join and help raise more money to help RLS-UK.

Nanny40 profile image
Nanny40

Hi all, I'm very excited to finally see this on Tuesday night, this is something i suffer with severely 😭 The first doctor i seen told me there was no such thing and that it was in my head!! He took no notice even when i told him i wanted to throw myself out the window to try and stop it happening.. thank god another doctor listened to me and gave me a new prescription..

Kaarina profile image
KaarinaAdministrator in reply to Nanny40

Hi Nanny, is that ignorant doctor still at your surgery? Perhaps you should leave a message for him to watch the RLS documentary. I informed my surgery about this programme being aired and got a reply thanking me for letting them know but whether the information was passed on is anyone's guess. At least I tried! :)

SLMCP profile image
SLMCP

I am sooooooo looking forward to watching the programme, can't wait. Would have loved to have been involved in it too.

FLAME43 profile image
FLAME43

i am thrilled and thank you most heartily for this opportunity to see a TV programme at last. can the membership fees be paid in a few smaller amounts, like £3/week for 5 weeks, i am a pensioner

Daragh profile image
Daragh in reply to FLAME43

Hello Flame43, please can you email chair@rls-uk.org and we can look into this for you!

FLAME43 profile image
FLAME43 in reply to Daragh

Hi, RLSUK have sent an e mail to the address provided, thanks

Restless1967 profile image
Restless1967

I was really looking forward to the programme but was disappointed that it only focused on the symptoms and not treatments . I have suffered for 14 years since the birth of my daughter and have now found something that has made a massive difference to my symptoms . I have been on iron tablets for many years but saw only a minimal improvement in my iron levels ( normal but at the very low end 49). I recently persuaded my gp to refer me to the hospital for an appointment with hemotology . They gave me an iron infusion and within a couple of days my Symptoms started to improve . A couple of weeks later they had virtually disappeared and I am no longer woken with itching , cramp or pains in my legs . My iron levels are now in the 300s and the difference in how I feel is amazing .

I would recommend this treatment to anyone suffering with RLS. Don't let the doctors fob you off it is amazing .

I also take 1mg Of Requip per evening but feel I can now start to wean myself off this too .

Twitcher profile image
Twitcher

I have to say I was disappointed - whilst my heart went out to the sufferer's shown, all it did was to illustrate the impact the condition has on a small group of individuals lives. That said, I think the emphasis was all wrong. There were two doctors interviewed - neither of them helped to illuminate or explain the condition, no scientific research material, no current treatments etc. I also found the background music inappropriate, irritating, and unnecessary. For me, I wanted something along the lines of a Horizon documentary - or a Michael Mosely approach - really digging down into what causes this terrible condition, what research is being done and what cures there might be. I guess one has to be thankful for the exposure because this is a condition that is largely in the 'shadows' but I wanted so much more than it was able to deliver!

Twitcher

Daragh profile image
Daragh in reply to Twitcher

Both doctors did in fact explain the condition but the final edit did not include it. I know that Dr. Julian Spinks was interviewed for two hours. We have had over 10,000 people find us as a result of the programme and that is a huge positive. We are of course disappointed that some areas we would have liked, such as those you mentioned, were not covered. Ultimately we have had thousands of people find us, hundreds of emails and over 700 new people on our Facebook page. Hopefully one day we will get to that 'Horizon documentary' - great idea by the way!

restless_in_usa profile image
restless_in_usa

I wish I had access to the TV program... im in the U.S., but I did just buy a membership for RLS_U.K.! If you know way I'd be able to access the TV program, please advise. :-) Thanks for all you do.

Casinogoer profile image
Casinogoer

I guess we won't be able to get this program in the United States. I would really like to see it having had RLS for about 35 years.

BarnGir1 profile image
BarnGir1

Do you know it this doc is available to purchase? At 6 years ago, is it still relevantly helpful today? Thanks! BarnGir1

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