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.
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.
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.
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
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?
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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
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.
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.
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
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.
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.
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”.
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.
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.
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.
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.
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
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
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,
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.
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
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.
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 .
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Is there a specialist in the uk for RLS?
consultants in the Uk to help rls
