Further to my post in April and the many of you who responded, I have been contacted by the production company who have advised that they will not now be going forward with the inclusion of an RLS 'case study' in the programme. They will however be including a short piece on RLS. Not ideal but better than nothing. What they plan to do is show the footage of RLS 'in action' and then have a doctor discuss the condition. At the very least this may help people who have RLS and who have not yet been diagnosed and/or those who may recognise the symptoms.
The production company have asked if anyone may have footage of their RLS 'in action'. This is an usual request but if anyone has footage, of any sort, they would appreciate it. It could be recorded on a phone or by other means as necessary. Please email me chair@rls-uk.org if you would like to provide such footage.
Thank you all for your interest and the many moving messages I was sent by those willing to take part in the show. I will pursue the production company to include a wider piece on RLS in any future series.
Regards
Daragh
Written by
Daragh
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Bad bad news....!!! Once again we (RLSERS) get pushed aside., i am very disappointed with this news... And i am fuming at the BBC for getting us excited in thinking at last we are going to get heard and seen.
Now we are going to get a few minutes of film of someone who has RLS, cause you bet it will only be one persons film that gets shown, on that basis they will have a doctor to discuss what he sees. Not good enough BBC..!!
I must defend the BBC here. It may well have been the production company who made the decision. It's very disappointing nonetheless...
totally in agreement here Elisse, so they will probably ask us all to make a film, i got a call at 5 this evening, and i said i would do the film for them, they will get everyone to do it, then just pick one film and give it a few seconds air time, and get a doctor to give his/her comments....furious..disappointed..letdown, and disgusted with them....not good enought !!!!doesnt do it justice,
jean..a very letdown jean !!!!!!!
Let me know who the Production company are, i feel a letter to them coming on and let them know just how we needed this coverage on RLS, in fact we were depending on them to get the media attention we so badly need...
i really want to know how many of us they have called and asked to do this film for them, they rang me at 5 this evening as i said, who else had a call ????
jean
good idea Elisse, what about a letter on behalf of all of us?? can that be arranged Daragh ??? just so they know how badly let down we are,
I would be happy to communicate your collective disappointment to the production company and will do so tomorrow. However, we should not lose sight of the fact that they are at least giving some coverage to RLS. I do not want to alienate them to the extent that they decide not to do so. However, i will send them a diplomatic message which strongly communicates our disappointment while at the same time wanting them to work with us. Please can I ask that, for the moment, nobody else contacts the production company to convey your disappointment. I will ensure your feelings are communicated effectively on your collective behalf...
Thanks Daragh i will leave that to you then,. You can see how angry i am over this.
I am sure it is the production team that makes that kind of decision, so don't be mad at the BBC. :o) I am irritated, too, and it would be good to communicate that to the company from our chair. We don't want to scare them off. I have been interviewed several times for different magazines, and RLS stories have mosty been "shelved". The big one I did about RLS and children for Parebt magazine was supposed to be out in Feb, but so far not yet. That reminds me of something I have to do.......later! :o)
Understandably Irene. I too am very disappointed as I put quite a bit of work and time into this. I also have RLS and would have loved the coverage of the condition on national television. However I have written to BBC Breakfast, This Morning, The One Show and others this evening to build on what we have achieved so far.
What we have achieved is the knowledge that we have a number of people who would be happy to act as case studies and I hope to be able to avail of all of your volunteering to participate in the near future, albeit in a slightly different guise!
I did the the same a couple of years ago, i e-mailed the morning programme that was before Daybreak. Asking if they would do a piece on RLS, as it didnt get hardly any coverage in the media. I did not get a reply, but a few weeks later my daughter saw them talking about RLS on the programme, she only caught the tail end of it, i missed it.... A coincidence they would be talking a few weeks later about RLS or because of my e-mail...?? It wasnt a big piece, We need a couple of people who can give their experience because no one usually has RLS in the same way...We need for people to see what the meds can do to us when they stop working. The agony we go through when walking the night away. So much, the media needs to show of the suffering, not just a few minutes of film showing one person in and out of bed through the night then a doctor talking about it...
Sorry for the long comment...
well i wont get in touch with them , i will leave it in your hands, but i really hope that more of us in this group let their feelings know about how badly let down we feel
Just doesn't seem fair when they've done many programs on sleep disorders and yet RLS always seem to get forgotten about hmm.... sounds like there're taking advice from a dr that doesn't believe in RLS sorry but that's what i believe seeing how many dr's don't or won't acknowledge RLS just my personal view
I agree it is a let down and once again we are pushed aside as not important!!
Yesterday I got asked the question has anyone with RLS actually ended life because they could not cope?? This I do not know but I have thought it when I have been dog tired and crying pacing back and forth, some say RLS is not life threttaning but I did hear stories of people wanting there legs removed so to me it is!
I am quite sure, even if RLS cannot be listed as cause of death, severe sleep deprivation can make anyone do anything. so, no, RLS will not kill you directly, but it is, as all sleep disorders are, connected with depression (from lack of sleep), heart disease, diabetes, and psychotic episodes, to name just a few. Tell people do not ever underestimate what a severely sleep deprived person is capapble of, because the answer is anything! I have had the chain saw "fantasy" where I removed my legs, but then we would just get phantom RLS, yes that is a real thing, too. :o) A good video of RLS in action would be someone in bed crying and pounding their legs.
Not quite suicidal but i have honestly had thoughts off taking a heavy hammer too my feet in the middle of the night when the pain is off the bearable scale its just got to the stage that i live in dread of night time not a great way to live as im sure you will understand
well im not ashamed to admit, ive come close to it at one time, when i couldnt get my rls under control, i was almost there
Quite a few times I have been close and it is a horrible feeling
We all know RLS, is not life threatening as other conditions are...BUT, it can lead to life threathening conditions, high blood pressure which can result in strokes, it can have an effect on your heart. and yes many of us think they cant go on anymore.....you just cant take it anymore, the sleep deprivating is horrendous....I have thought a few times whats the point of life anymore when i have been at a low ebb...
It is quite difficult to capture a syndrome "in action" when the symptoms are inside one's body! It's like asking someone with IBS to show what it's like on camera. Very difficult request! Our legs move in response to an interior prompt. The movement is not the disease. I hope that is made clear in whatever programme they produce.
The production company is 'Wall to Wall', just google it and you will see their record.
They have been in contact with me as well, seem as if they want to see RLS on demand!! Ridiculous. They said well then, can you film an episode what's next I wonder!!??
hi Darcy, thats exactly what they said to me last night, they rang me at 5, asking me to "film myself" i said i would do it, but not now i wont,
Asking to show RLS in action just shows that the BBC and the Doctors who will be on the program do not understnd RLS at all, what a stupid request. RLS in action is a human being standing in a corner sobbing hyterically because they cannot control the RLS and the utter fatigue that goes with it. Shame on you program makers be you the BBC or the production company
I really am very disappointed to hear this, just because we cannot produce symptoms on demand. The only reason I did not respond to the call to (audition) is because I am so newly diagnosed. It just started 2 months ago out of the blue, and was instantly quite severe. 7 days a week and all the time. What a shock. I just hope the production company use a doctor who knows what he is talking about or this programme will do more harm than good! caz
That is bad news for those of you who were so excited about this. Any publicity is better than none. If they are looking for footage of RLS in action tell them to go to UTUBE. LOTS of videos there about RLS, good and bad. I just hope this does not go the way of most RLS pieces. They do 2 mins on it, then a doctor tells you there is medication for it, an that is it. I have seen that happen on a lot of shows. Dr,Oz did an RLS segment on his show that lasted 3 mins, and he spent half of it talking about the "soap" remedy. I was more than just a little ticked off at that one. I hope they at least include what RLS does to your quality of life. Case studies are the best thing to show that off........too bad! :o( When the program comes out let us know.
Exactly what i think will happen, a few mins of watching someone with RLS and up and down in the night, then a doctor saying there are medications for this and list them, then say when you take the meds, then all will be fine and you will sleep at night....yeah right....
totally agree with you Elisse then everyone says whats the problem ... you got your meds lol hmm..... keep taking the pill , they could actually do a whole program on RLS as they did with sleep walkers couple year back
Yes it will be a doctor talking about RLS and saying there is medication to help and that will be it he won't explain the torture and suffering we go through and the emotional sides of each individual like not being able to have children and living life is difficult as sitting on busses in cars, restaurants etc can be difficult , it is very maddening they will never understand untill they experience it!!!!
They should read this forum and maybe then they will take it in!!
At some point a few yrs ago, some company was supposed to be developing a machine that doctors and medical personnel with RLS could put on thier legs to have the "RLS experience". Yeah, right. They had several protocols, none of which made it to market, because there is no way they could replicate that RLS feeling buzzing around and attacking us. I wish there was a way to simulate RLS for people that don't have it, throw them in the simulator for 24 hrs, and then ask them if they think it is not that bad.
make it a week... sounds a great idea shame there isn't such thing then maybe more research would go into it as much as sleep walking ,
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