Misleading title...very. Why Channel 5 thought appropriate??
However. It would be more helpful if RLS peeps. STOPPED!! Took a breath and looked at it from the general viewing audience point of view. The opening credits stated it was a catch-up with the previously filmed participants, to see if any changes/worsening of condition.
My personal inbox, and people I have seen, been in contact with over the past week have been nothing but supportive, no, sorry, one negative email. Many, again saying they did not realise, or some, even know of the syndrome. I totally agree with comments, re-: nothing in the documentary for RLS sufferers. Title, yes, very misleading. Medical info limited for obvious reasons. Could have mentioned research, yes, could have had more in depth discussion from a Neurologist...Dr Spinks, very knowledgable but, a GP.
Could have, should have, included what? who’s research, UK, European, American.
You will never get a programme, (specifically made for RLS or any other “Cinderella” unseen, unknown), financed, produced and transmitted on main stream television.
I’m grateful to both Channel 5, Iconfilms for producing and transmitting the 2hrs worth of publicity we’ve had in these 2 documentaries. That’s 2 hours coverage on MM in the 58yrs I’ve suffered. I’LL TAKE THAT, AND THANK YOU.
So, complain to OFCOM re-: the title by all means. But for heavens sake, please stop with the negativity. It serves no purpose. Be grateful that people, as those who’ve contacted myself, are now or more aware of our insidious body sharing Gremlin.
Written by
Stumpy45
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Bilge. What disgraceful terminology. Demeaning participants, really. Having said the title was misleading previously, (which I am in complete agreement with), more on that later.
I simply say, as a participant, I find some of the comments made both offensive and totally uncalled for. Everyone is entitled to their opinion and I respect people’s take on any given subject, topic, whatever. And yes, I also agree at times the methods some of us use for “ANY” form of relief, may, indeed probably will, be seen being stupidly crazy. But during those darkest of times of severity if you haven’t been there you wouldn’t know what you’d be prepared to go through.
Anyway, back to the programme, during the narrated intro it stated quite clearly they were following up on the previous documentaries participants for any changes in symptoms or methods of coping. Yes original footage included for comparison. Some medical professional input, but what are they going to tell us we basically do not already know. They cannot for obvious reason recommend medication. They could of course have gone on to talking of the research being done worldwide, but whose research to choose. Yes, I do agree they could have chosen any for confirmation research was being done, they didn’t. Although I can research my own should I wish, not a great omission, my opinion of course.
Now the documentary title.....VERY MISLEADING, YES. However there is a BUT!! Most comments stress the disappointment of tuning in to hear of this “NEW CURE”. I may be a bit biased here, being an actual participant but had there been some miraculous development in the treatment of RLS, one would imagine, for instance, it would have been plastered over every single RLS group page, website, Twitter, Facebook, chat room etc. In fact everywhere and any forum RLS peeps go for their information, help, hints, tips etc on coping with the syndrome, or latest developments in research. So to imagine this “NEW CURE” would be suddenly divulged on a tv programme with all these avenues of information having no knowledge of such, (seems a little naive at best, no intention to be rude), just not possible.
I say yes to complain, of the misleading title if you wish, but to OFCOM!!
Why not in the first instance do as most people when either selling or giving something, if there is a problem or issue, to contact that person first to try and resolve whatever the problem may be....ergo, complain to Channel 5 initially and let them explain their rational in choosing such a Headline title. Then, no satisfaction got further.
But a petition to OFCOM, really!
Oh, and by the way. The programme wasn’t just about or targeting just we RLS sufferers. Literally millions of NON sufferers are out there, it’s not just about “US”. We all have families, friends etc who also live with the condition through us. So please don’t belittle or decry the content or the contribution we participants and friends or family made to the further raising to another! few hundred thousands non sufferers who tuned in to watch.
How many other solely RLS main stream hour long TV programmes have any of us seen over the past 50 years. So thank you Channel 5 and Iconfilms for doing just that.....
I also appreciate the efforts some have made in finding me on social media and messaged, mostly supportive for our contribution to rating the profile, even a little. But for just one or two not so complimentary.....how sad.
To end, I promise to make no further contribution to this particular topic.
May RLS leave you in peace, and I hope you all find whatever method of relief suits your needs, be it medicinally or otherwise.
Complaining to OFCOM is what RLS-UK decided needed doing over the title. So take you moan to them on that. And as you can see most everyone agreed and was happy to sign the complaint. RLS-UK i believe was asked to send all comments on the programme to Channel 5 , so people gave their opinons , it is a free country still. I know you dont like what people have to say on the programme and what they saw, you didnt the first time round. I am sure we can let OFCOM decide on whether the title was misleading thats what they are their for, to look at complaints of programmes and either uphold the complaint or dismiss it. I hope things improve for you with your RLS in the future.
There was plenty they could have said that would have been legal. We had just ONE person who went to see their doctor and got some meds which did seem to be helping, What about the others, no mention of them seeing their doctor? Did they see a doctor and were working out a treatment plan for them..? As both of them were in the same situation as the last programme, so why were they. ? Last time we were told medications could not be mentioned, yet this time one was by name. Dr Spinks said he had plenty to say but most of it got cut , just as it did the last time. Yes it raised awareness again, just like the first one did, but they didnt address anything different from the first one, AND that is the point everyone has been saying,. You said a few times WHY complain to OFCOM, and i gave the reason for that It was what RLS-UK decided needed to be done.
You express some pertinent thoughts on this emotive issue. I take some of your points.
Not only are many people affected by RLS who don't actually have it, as I think you say, but also there may be many people that DO have it and don't realise what it is. So you could say the programme served a purpose in raising awareness.
My personal concern about this programme was a moral concern. To broadcast depictions of people in extremis, in a fairly dramatic way without apparently offering them any support I believe to be exploitive.
There are, I believe ways in which these poor folk could be supported despite the lack of a cure and yet they apparently weren't.
I understand that sometimes it's defensible to take an ethnological approach to observing people, i.e. to observe without influencing them in any way. This however was no such study it was a commercial TV programme. Furthermore, they observed their suffering a year ago and seemingly haven't helped in any way during that year.
I've seen programmes where animals have been used, fictional or documentary where it was stated at the end, "no animal was harmed during the making of this programme". OR some statement was made at the end about what intervention was later made and what the outcome was.
I recall in the past seeing a film simply called "John". It was an ethnological study of a young boy , "John" who, in the 1950's was put in an orphanage whilst his mother was in maternity hospital for 10 days and his dad had no time off work. To observe the distress and eventual despair this poor boy experienced and the look of betrayal on his face in being reunited with his mum was very disturbing. It's only at the end of the film that you realise that one of the researchers is in the room with the boy during the filming, but doesn't interact with him in any way. However, the film was made by two psychologists who were studying "separation anxiety" in young children. The study did contribute to reforms in health services for children, paediatrics as a medical speciality etc.
I can't see any benefit from the RLS programme that would outweigh the dubious ethical issue it raises.
Presumably, the people in the programme at least consented to being filmed. I wonder what they thought the benefit might be. It would be interesting to hear their views on the programme.
May I please respectfully enquire Are you a solicitor by profession by any chance???-The administrator has quite correctly encouraged us all put a comment (in the form of a complaint) which will serve as EVIDENCE to take to OFCOM so they can justify their reasons & act accordingly & no doubt other sufferers will continue to put their complaints forward. If the administrators tell us to stop doing it (which I very much doubt)
Why should we think about the wider viewing -people the whole idea of the complaints was because the sufferers on this site have been very distressed by the show & its title All of the administrators quite rightly are concerned with is the welfare of the sufferers on this site & not concerned with the wider viewing public . they may take a view from the wider viewing public privately - I dont know) but on this site they are just concerned about their fellow sufferers who were distressed as a result of the show & are quite entitled to keep putting negative comments as much as they want & say it in which ever way they want to express their anger/frustration etc
So I feel that by you saying it'll serve us no purpose is wrong Every single comment /complaint put by "us" - the users of this site does serve as a purpose -
Until the administrators advise us otherwise everyone will continue to put their complaint forward to OFCOM via the link we have been provided on this site
You are in no doubt the only one who is grateful to channel5 /iconfilms because none of us are grateful only furious over their tactlessness,
What do you mean by “Cinderella” unseen, unknown), financed, produced and transmitted on main stream television.?
There have been many programmes specifically made for sufferers of many debilitating conditions/illnesses & showing programmes highlighting illnesses for example the soaps (highlighting teenage pregnancy & many other conditions in real life & using their favourite shows to highlight it -something they have won awards for
Last paragraph....to my limited 56yr suffering knowledge, not for and solely about RLS. but then I might not be one of these intelligent people RLS uk is full of, as mentioned in one or two comments. And no, I have no quarrel with any complaint re the title, I would do so myself, but in the first instance to Channel 5, then, if no satisfactory answer, take the complaint further. But to OFCOM no, what am I going to get from that, other than the satisfaction I signed a petition or whatever. Far better going to the decision makers for the programme content, at least you would have an answer as to why they thought it appropriate. THAT is what I would want to know, and just why I HAVE asked them.
Hi Stumpy45 As regards where to complain - in fairness Kaarina (& other admins -I think)who initiated the complaint in the first place told us we must submit our complaints using the OFCOM link & following the instructions required so they can read it-She didnt say anything about submitting it to channel 5 in the first instance
I asked her myself if I could submit my complaint direct to them as well so that they could be aware & ready to receive our complaints, but she quite rightly advised me not to & to only put it via the OFCOM link she has provided & I haven't submitted anything to channel 5 as she requested but to put it ONLY on the OFCOM site (using the link she has provided)
What I wrote in reply to your question above, which you wrote on another thread, was "It is up to you whether you wish to personally complain to Channel 5.
Please do not make any reference to the complaints that will be sent to Ofcom by Daragh Bogan, Chair of RLS-UK. "
Just to make it clear, Sara, it is Daragh Bogan, Chair, RLS-UK who provided the link to Ofcom, for those who wish to complain about the Channel 5 Programme.
Hi Kaarina - I've just replied in the same way everyone else has.- My large note about enquiring whether someone was an administrator/solicitor wasnt aimed at you it was aimed at another person who it seemed to me having a go at everyone because we were making our complaints heard via the OFCOM link you provided & seemed to me criticising virtually everything we put.
If I've put my reply in the wrong place & it looks like it was aimed at you then I do apologise profusely but I can assure you absolutely that it was not aimed at you
If Ive done something wrong or said something that has upset or annoyed you then without doubt I absolutely apologise.
I think what I need to do is when reading someones message then look more carefully where their reply to is & reply there which I will in future do so I dont risk upsetting someone -
Just as a clarified observation my cross comment was not aimed at you but merely another user & if I have upset you in any way then I totally apologise
Thanks
Sara_2611
Het guys!
Having not been able to view the program, I am just a neutral party here.
1. To Stumpy’s statement that the program did a good job in raising awaresness:
Is it possible that Stumpy is making a valid point here? If the goal was to raise awareness, was this accomplished? If the goal was not to raise awareness, then what was it?
2. Similar to my first point in raising awareness: Stumpy is right; there are two types of sufferers here: primary sufferers (the ones with RLS) and secondary sufferers (spouses, caregivers, doctors of RLS patients, kids who have parent(s) with RLS, etc.). I know that, had he been able to watch it, my husband would’ve been grateful to see this.
2. To Stumpy’s statement that they cannot recommendation medication:
My gut tells me that Stumpy is right; they cannot ethically recommend medications. I mean, what if a viewer was to take them up on a drug recommendation and then have a reaction to it? Who to blame for that mistake? The TV show? It’d sound a little silly if the justification for taking the drug was «the TV program I saw recommended it». On the other hand, though, I don’t think many doctors would give patients a drug just because their program recommended it; I’m sure they’d look carefully at the paient’s medical history before doing that.
Again, I can’t take a clear stance on a program I haven’t seen, so this is just food for thought.
Take care everyone!🙂
• in reply to
Sails, you really HAD to watch the programme to know WHY everyone was annoyed, angry etc. The goal was NOT to just raise awareness. Read my reply back to stumpy.
• in reply to
Fair enough Elisse.🙂 You’re exactly right; heck, I might even be as pissed as most everyone else if I had actually seen it!
I won’t comment on it anymore.
Hope you’re doing well.
(I read your response to Stumpy before this one, so I knew you were coming my way).
Hi Sails - I agree with Elise2 - In all due respect to you its better that you see the programme first - Do you have catch up at all or various versions of it depending on your network? If so see if you can watch it from there or see it its on You Tube, & if it is watch it on your laptop & see how you feel-what you think then submit your complaint (if you feel negative about it)
Just tried it and was unsuccessful. Thanks anyway!
• in reply to
Sorry, mustn't he available outside UK
• in reply to
Must be because it says it’s not available in my region
• in reply to
I checked, it's only accessible in UK. Last time I went to Ukraine I couldn't access my usual internet TV service. Fortunately, I had a VPN service which made it appear I was in London instead of Odessa and it worked.
It's not worth getting VPN just to see a programme though.
Oh my gosh. As someone who isn’t on here every day, but checks in now and then, I would suggest that Post’s provide some sort of brief lead in, such as, “commenting on the recently aired program and the recent negative responses...” Diving into a ranting post is hard enough, but without context it’s doubly challenging. I wanted to actually know about it, but not this way.
I can see your problem. It's best to see it really. Unfortunately, it doesn't seem to be accessible outside the UK.
Attempting to avoid any value judgements -
From the point of view of suffering from RSL/PLMD and wanting to know more about its treatment or management it didn't offer any information.
I believe there was no mention of any treatment and the sufferers featured didn't appear to be managing.
One of them was a woman who's RLS led to a relationship breakdown. She became socially isolated and withdrawn. She found another partner and he was extremely tolerant but their social life was restricted.
One was a chap who suffered terrible PLMD to the point he broke toes and fingers while he was asleep. His bed had metal rails at top and bottom.
The third was a chap who caused himself pain deliberately to distract himself from his RLS. He deliberately trapped his hand or foot in a door.
It was a follow up to a previous programme which I never saw. Others have said they hadn't improved since the previous programme. There were a few comments from a doctor.
If you're in the UK you can see It on channel 5 catchup.
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