RLS-UK Complaint to OFCOM: RLS-UK is... - Restless Legs Syn...

Restless Legs Syndrome

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RLS-UK Complaint to OFCOM

Daragh profile image
79 Replies

RLS-UK is submitting a complaint to OFCOM further to Channel 5’s '‘Restless Legs Syndrome: A New Cure?” which was transmitted on 6th March 2019.

TO OUR SUPPORTERS AND MEMBERS: PLEASE ADD YOUR COMMENT TO THE COMPLAINT, WHICH YOU CAN ACCESS VIA OUR WEBSITE (LINK BELOW).

PLEASE ONLY COMMENT IF YOU WISH TO SUPPORT THE COMPLAINT AND ENSURE YOU INCLUDE YOUR NAME AND THE FIRST THREE CHARACTERS OF YOUR POSTCODE. PLEASE ONLY COMMENT IF YOU WATCHED THE PROGRAMME AND ARE RESIDENT IN THE UK OR IRELAND.

THANK YOU.

rls-uk.org/ofcom-complaint

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Daragh profile image
Daragh
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79 Replies

Done,.!

I hope members from the UK are signing the petition. There doesnt seem to be many who have done this yet. :)

Kaarina profile image
KaarinaAdministrator in reply to

So far about 50 people have commented on the RLS-UK website but unfortunately around 12 replies, although they have included their name, have omitted to add the first three characters of their postcode which is needed for the complaint to be accepted.

in reply toKaarina

The instructions are clear enough and in capitals grrrr. Kaarina could you tell them the same over on RLS-UK FB page.

Kaarina profile image
KaarinaAdministrator in reply to

Hi Elisse, totally agree with you. We shall do our best to post the message again on FB emphasising that the first three post code characters must be added to any comments made.

Sara_2611 profile image
Sara_2611 in reply to

Ive put my comment /complaint on this website & added the required details requested for complaint submission & like others made my feelings clear how disgusted I am

Is there an actual attached document for me to add my name or am I doing it right by just replying to you like this

Oscarsaurus profile image
Oscarsaurus in reply to

I am from Birmingham UK and have commented

Kaarina profile image
KaarinaAdministrator in reply toOscarsaurus

Thank you for your support. It is appreciated.

Done,

Yet again Channel 5 have employed falsehoods to sensationalise their very limited program. It is extremely upsetting to be deceived into thinking “at last a cure from a lifetime of misery “.

This should never happen, may sufferers are living life on the edge of life itself. Programs such as this could well tip the balance for very vulnerable sufferers.

Why, when making this program, would they not consult or even interview the very knowledgable experts at RLSUK?

Kaarina profile image
KaarinaAdministrator in reply toPramipexoleaddict

Pramipexoleaddict,

Did you add the first three characters of your postcode when you added your comment?

Pramipexoleaddict profile image
Pramipexoleaddict in reply toKaarina

Certainly did Karina :)

Pramipexoleaddict profile image
Pramipexoleaddict in reply toKaarina

Although the whole thing seems to have disappeared?

Pramipexoleaddict profile image
Pramipexoleaddict in reply toKaarina

All sorted!

in reply toPramipexoleaddict

I was not able to watch the program since I am not in the UK, but I am in total agreement with you here! This disease is EXTREMELY good at making people feel vulnerable and at a total loss of what to do. To imply that there might be a cure out there and then not give it is utterly neglient for us poor sufferers. Doing that is like taking bullying to the next level. I would be interested to know how many sufferers saw it while in the throes of despair, asking God what the hell was happening to their body and to please have mercy on them??

Also, why they would tell RLS-UK that they would have no influence is beyond my comprehension.

Joolsg profile image
Joolsg

Done

Jose651 profile image
Jose651

Done, 😉

martino profile image
martino

I chose not to watch the programme as I knew there was no cure. At best there is treatment to keep the condition at bay. If there had been a cure I am sure we would have hear about it! I will, as I want to add my name, watch the programme then I can be properly objective in any comments I make.

Kaarina profile image
KaarinaAdministrator in reply tomartino

Hi martino,

I can quite understand why you chose not to view the programme. We are very grateful that you have decided to watch it now, purely so that you can comment. Thank you. Remember to add the first three characters of your postcode. :)

my5.tv/restless-legs-syndro...

martino profile image
martino in reply toKaarina

I have now seen it and found it to be quite watchable. The title of the programme was very misleading however. The only mention of cure was at the end when DrSpinks said a cure was some way away. What did we learn? It affects some people quite badly. We can also stick our feet under sharp door edges for distraction. Many people who have RLS can effectively manage their conditions with drug regimes but there was virtually no mention of this. I am glad I did not watch it expecting to see or hear about a cure. I will endorse the letter from the Chair.

Parminter profile image
Parminter in reply tomartino

WEll, I have learned something from you, Martino! Now I can stick my feet under the door! Wow, great science.

I am in Africa, and could not watch, but it sounds ludicrous.

Allyp69 profile image
Allyp69

I watched the first programme and the follow-up on Wednesday. There was no cure mentioned and the title gave false hope to thousands of sufferers of RLS.

Kaarina profile image
KaarinaAdministrator in reply toAllyp69

Hi Allyp69,

It would be appreciated if you are willing to comment on the RLS-UK website about the programme.

2themoon profile image
2themoon

I totally agree. As a sufferer for many years I was hoping for some positive news but the programme’s title mislead viewers and once again it made the participants look ridiculous and did our ‘cause’ more harm than good.

Kaarina profile image
KaarinaAdministrator in reply to2themoon

Hi 2themoon,

It would be appreciated if you are willing to comment on the RLS-UK website about the programme..

wantmysleep profile image
wantmysleep

I tried to post my comment but was unable to do so. I also tried to create account twice using my 2 different email addresses, but was still unable to log in. What have I not done correctly?

in reply towantmysleep

Just do it as a guest, hope that helps.

Kaarina profile image
KaarinaAdministrator in reply to

You got there a minute before me with your answer regarding commenting as a guest. Thank you. ;) :)

Kaarina profile image
KaarinaAdministrator in reply towantmysleep

Some members are commenting as a guest. Perhaps you could try that?

Gmc54 profile image
Gmc54

Just left my comment. I really had hoped for a better programme this time,

Kaarina profile image
KaarinaAdministrator in reply toGmc54

Thank you for commenting, Gmc54.

Palamino profile image
Palamino

Done

Kaarina profile image
KaarinaAdministrator in reply toPalamino

Thank you, Palamino.

Eryl profile image
Eryl

I'm afraid that I must disagree with you on one point. You say "there is no cure". I would point out that 'absence of evidence is not evidence of absence'. Just because you haven't found a cure, it doesn't mean that there is no cure.

I and a few others have found relief through diet.

in reply toEryl

Play on words. :(

Lash65 profile image
Lash65 in reply toEryl

I'm beginning to wonder if there's something in bread that aggravates it.

Eryl profile image
Eryl in reply toLash65

Yes, cooked starch which is easily converted into blood sugar. That increases insulin levels, which causes neuropathy.

martino profile image
martino in reply toEryl

But relief is not a cure?

Eryl profile image
Eryl in reply tomartino

Maybe I should have used 'eliminated' rather than 'relieved'. I mean, As long as I stick to the diet I don't get rls. Rls is a sign that the nerves are being damaged by something in the blood. In most cases that's high insulin levels caused by high carbohydrate consumption.

Daragh profile image
Daragh in reply toEryl

Sorry, but you are making some pretty big and sweeping assertions there. For example, pregnant women getting RLS has very little to do with carbohydrates.

Daragh profile image
Daragh in reply toEryl

I can see your point but I have volunteered in the field of RLS for 8 years and have met countless neurologists who specialise in RLS. Every single one of them maintains that there is no ‘cure’ for RLS. If we want to be specific and add the word ‘known’ before ‘cure’, we can do so but it doesn’t change the point - there is no cure for RLS. Diertary changes are lifestyle changes and there’s lots of evidence to show lifestyle can changes can reduce symptoms, often significantly, but this a not a cure, it’s symptom management. So until evidence is put forward to the contrary, I and RLS-UK will maintain the clear position that there is no cure for RLS. Daragh, RLS-UK

Eryl profile image
Eryl in reply toDaragh

Are you familiar with the work of Terry Wahls and Professor Robert Lustig? They point out how far the modern 'Western diet' has moved from the paleolithic diet for which modern man evolved. Also they point out how important it is to exercise. Lustig even explains the whole biochemistry, so it's not a fad. That's why many of us need a radical lifestyle change.

Daragh profile image
Daragh in reply toEryl

I’m not but I will read their work as it’s good to be open to all viewpoints. At the same time, there are countless neurologists who attest to the fact that there is no cure for RLS. We (RLS-UK) fully support the argument that lifestyle changes, including dietary changes, can make a huge difference for many people - but not all of them. As the earliest documented observations of RLS date back hundreds of years we should be wary of seeing it as a result of a modern “western diet”. Incidentally, RLS is also very common in Japan and the middle-East.

in reply toDaragh

And i agree with you completely Daragh,

lass profile image
lass

Just done it so very disappointed in the program watched it with my husband who just said that was a waste of time they shouldn’t be allowed to give programs such a title

Kaarina profile image
KaarinaAdministrator in reply tolass

Hi lass, thank you for commenting. I take it you commented on the RLS-UK website although I could not see your name but perhaps I missed it.

I have deleted your name and the first part of your postcode that you printed here on the forum for your own security.

lass profile image
lass in reply toKaarina

Thank you Karina did it wrong but if you check on the RLS-UK hopefully I got it right this time

Kaarina profile image
KaarinaAdministrator in reply tolass

Hi Lass, Thank you, I am sure you did it correctly. Thank you for your support.

Kryn profile image
Kryn

Very disappointing program. It just highlighted the RLS and didn't give any information as to the different forms of meds that may help to ease these terrible symptoms.

Kaarina profile image
KaarinaAdministrator in reply toKryn

Thank you for your support, Kryn. Have you also commented on the RLS-UK website?

Kryn profile image
Kryn in reply toKaarina

Yes, I have!

Kaarina profile image
KaarinaAdministrator in reply toKryn

Hi Kryn, thank you so much. It is appreciated.

Kryn profile image
Kryn in reply toKaarina

Not a problem Katarina!

Tubbygranny profile image
Tubbygranny

I have been an RLS sufferer for 60 years but nowhere as bad as the people featured in the programme.

I watched the programme hoping to hear of some up to date information on the ‘cure’ mentioned in the title but was sorely disappointed.

I think it raised our hopes and expectations but let us down badly. The title was definitely misleading.

Kaarina profile image
KaarinaAdministrator in reply toTubbygranny

Hi Tubbygranny

Would you like to post your comments on the RLS-UK webpage with all the other comments to Ofcom? I shall delete your name and part of your postcode from your posting on this forum, for your own security.

The comments are being added via this link: rls-uk.org/ofcom-complaint/...

If you have difficulty logging on, you can comment as a guest. Thank you for your support.

Jelbea profile image
Jelbea

I thought program was a waste of time . Anyone who expected to hear of a cure was sadly disappointed. I watched it whilst in the middle of RLS attack and pacing about feeling quite angry that there wasn’t even a specialist to give support and let people know what is being done to find a “CURE”.

Kaarina profile image
KaarinaAdministrator in reply toJelbea

Hi Jelbea,

Would you like to copy and paste your comments along with your name and part of your postcode onto the link below, where all the other comments are being collected for Ofcom.

rls-uk.org/ofcom-complaint/...

If you have trouble logging on, you can comment as a guest.

I shall remove your name and part of your postcode from this site for your own security.

Thank you for your support.

Annty profile image
Annty

Watched in false hope of something that would help. Friends encouraging me to watch as they also thought would be showing a cure. False advertising. False hope that was cruelly dashed and left this viewer, suffering from RLS, feeling a lot worse than before. Atrocious miss-use of my trust.

Kaarina profile image
KaarinaAdministrator in reply toAnnty

Hi Annty,

Would you like to copy and paste your comments along with your name and part of your postcode onto the link below, where all the other comments are being collected for Ofcom.

rls-uk.org/ofcom-complaint/...

If you have trouble logging on, you can comment as a guest.

I shall remove your name and part of your postcode from this site for your own security.

Thank you for your support.

JohnBeal profile image
JohnBeal

I was expecting something more constructive. where is "the new cure". Back to my Pramipexole .

Kaarina profile image
KaarinaAdministrator in reply toJohnBeal

Hi JohnBeal,

If you would like to comment to Ofcom you need to post your comment on rls-uk.org/ofcom-complaint/... and add the first three characters of your postcode there. If you have difficulty logging on you can comment as a guest.

Sara_2611 profile image
Sara_2611 in reply toKaarina

Hi Karrina -Ive posted my complaint where you've said but had to post it as a guest because for some reason it wasn't logging me in but when I pressed the guest login my comment is there plus my full name & the first 3 characters of my postcode as you requested

Thanks

sara

LoisTonya profile image
LoisTonya

Yes, I watched it in hope. There was no mention of treatment, let alone a cure. Those with RLS know what it’s like so it was no help to us. It was just depressing because the condition of people shown had deteriorated since the last programme

Kaarina profile image
KaarinaAdministrator in reply toLoisTonya

Hi LoisTonya

If you wish to comment to Ofcom you need to post your comment on rls-uk.org/ofcom-complaint/... and add the first three characters of your postcode there. If you have difficulty logging on, you can comment as a guest.

I have removed your name and part of your postcode from your posting here, for your own security,

SilkiB profile image
SilkiB

I was absolutely disgusted with this non programme. The programme advertised in advance they there had been found a cure for this horrible illness. What was this programme all about. The same three people who suffer from RLS being interviewed with nothing new to say. No cure being suggested other than cannabis which GP's will not prescribe. So please do not make a programme giving false representation about saying that there is a cure.

Sara_2611 profile image
Sara_2611

Yes I watched the programme & it was very misleading -the title was very misleading -just as there is no cure for the common cold there is NO CURE FOR RLS - & the title should've been called something more appropriate I support the complaint fully Pease submit my complaint Thanks

Kaarina profile image
KaarinaAdministrator in reply toSara_2611

Hi Sara,

If you would like your comments to be seen by Ofcom please copy and paste your comment on to rls-uk.org/ofcom-complaint/... and add the first part of your postcode there. Should you have problems logging on, please comment as a guest.

Lapsedrunner profile image
Lapsedrunner

Done

Kaarina profile image
KaarinaAdministrator in reply toLapsedrunner

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

gypsy49 profile image
gypsy49

I wrote a long comment clicked post comment only for it to blumming go onto me adding myself onto the site either joining or guest of course i didn't copy out what i'd typed didn't think i'd need to kind of feel blown out... now can't remember what i put should state before hand about joining or being a guest to be able to comment kind of disappointed with that .

FitzGB profile image
FitzGB

An absolute waste of time and misrepresented in the the Title "A new Cure?"

kika82 profile image
kika82

Done too

Kaarina profile image
KaarinaAdministrator in reply tokika82

Many thanks, kika82. It is appreciated.

Done and details left.

Kaarina profile image
KaarinaAdministrator in reply to

Thank you for your support, Raffs.

in reply toKaarina

No worries - its a lot less cheaper than attacking the film-makers :) :p

Kaarina, do you know when Daragh will be sending it in to Ofcom. ?

Kaarina profile image
KaarinaAdministrator in reply to

Elisse, I have messaged Daragh with your question.

Kaarina profile image
KaarinaAdministrator in reply toKaarina

Hi Elisse,

No set date but probably over this weekend.

in reply toKaarina

Thank you Kaarina.

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