UK TV PROGRAmME - RLS - THE NEW CURE

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Polar Bear
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UK TV PROGRAmME - RLS - THE NEW CURE

Postby Polar Bear » Thu Mar 07, 2019 6:58 pm

This television programme was aired last night in the UK. The title being RLS - The New Cure.
My first reaction being - there is no cure.

It was a follow up to a previous programme about 2 years ago which followed 4 sufferers of severe symptoms. Last night's show returned to these sufferers and talked to them about how they are today.

It was interesting when it accompanied one lady on a 4 hour car journey and clearly showed her distress.

Another guy who also had PLMS was filmed overnight and showed very clearly how he gained such injuries as broken toes from his pretty violent PLMS as his feet banged off the metal foot board of his bed. He said he couldn't afford to buy a new bed. To which my husband commented..... Think I'd be taking a saw to that metal foot board !!

One elderly man in the last programme was actually shown closing the door on his feet in order to exchange that pain for the RLS symptoms. Last night saw him sitting in his garden on a lovely summer's day..... using the garden hose to keep cold water directed onto his legs and getting some relief. Made me smile.

However, the doctor in the show who was giving his opinions and providing information was less than bland and about as much use as a chocolate teapot!! He only generally referred to low iron being involved and didn't mention serum ferritin or brain iron. He also did not mention augmentation. He said nothing that a sufferer would not already know.

At the end of the show the narrator commented - RLS, THE CURE, THERE IS NO CURE.

The group RLS-UK were originally asked to be involved in the show but refused because of the title.
https://www.rls-uk.org/news/2019/3/2/re ... -6th-march

It was good in that it did go some way to showing a non sufferer how distressing and tortuous RLS can be.
My husband watched it with 100% attention.

I felt that the participants gave a good account of themselves and for that I am thankful and appreciative.
As for the producers/directors and their medical doctor - Best I can manage is - Could have done better !!
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby Rustsmith » Thu Mar 07, 2019 7:42 pm

Betty, I got to watch it over the Internet and came away with many of the same conclusions.

I have seen comments this morning for UK participants in a FB group that indicated that the producers left most of the interviews with the doctors on the cutting room floor. One person was familiar with those interviews and said that they really did do a good job, but that they were portrayed poorly.

As I was watching the first part about the woman, I realized that my feet and legs were doing the same thing that hers were. Later, when they showed the man going through full body RLS and saying that this was only the third time it had happened, I realized that he isn't as bad as I am.

As fore the guy with PLMS, my thought was "you idiot! Take the mattress off of the frame, put the mattress on the floor and remove that steel frame from the room and move all the rest of the furniture away from the mattress".

My biggest disappointment in the show is that they didn't take the 3 people and follow them to a visit with an RLS savvy doctor to get them proper treatment. They very briefly had the woman summarize all the things that she is taking, but they never said anything about medical treatment for the other two. This direction would have been ever so much more interesting and useful.

As for the cure bit in the title, my only disappointment was that the didn't even say the word until the last few seconds. I saw a post by one woman who said that she was already working on her letter to the false advertising board.

For those who missed it, you can try this link to possibly be able to see the program. I didn't follow the link all the way through to verify that it works.
https://www.channel5.com/show/restless-legs-syndrome-the-new-cure/

[edit] I found out that the link only works for those in the British Isles. For the rest of us, sorry you missed it.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby Polar Bear » Thu Mar 07, 2019 8:52 pm

Steve, your link works ok.

Yaaaay.... that you got to see the programme.

As for the cure bit in the title, my only disappointment was that the didn't even say the word until the last few seconds. I saw a post by one woman who said that she was already working on her letter to the false advertising board.

Absolutely, I felt so much that it was false advertising.

indicated that the producers left most of the interviews with the doctors on the cutting room floor. One person was familiar with those interviews and said that they really did do a good job, but that they were portrayed poorly.

If this is the case isn't it such a shame that an opportunity for good information was not well used. And a let down for the doctor/s if they edited them to the point of diluting their purpose.

Definitely a yes to the idiot/poor man with PLMS - get rid of those dangerous corners. Childproof the bed.

they didn't take the 3 people and follow them to a visit with an RLS savvy doctor to get them proper treatment. They very briefly had the woman summarize all the things that she is taking, but they never said anything about medical treatment for the other two. This direction would have been ever so much more interesting and useful.

When settling down to watch this programme I honestly thought that treatment would be very high on the agenda, bearing in mind the programme title. Although interesting to see how the sufferers coped it was very disappointing in its content with regard to help, advice and good treatment.
And yes, wouldn't it have been nice, and very appropriate, to have provide a (very long) consultation for each of the participants and see them on their way with some hope.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby Rustsmith » Thu Mar 07, 2019 9:07 pm

Two further comments:

1. I added the [edit] above that the link only works in the British Isles.
2. The admin of the FB group that I participate in is in the UK and apparently knows one of the doctors. She said that he was very upset with how his interview turned out. Apparently he did describe the various treatments available, but that didn't get aired. He was particularly upset that they wasted his time. So, if there is another followup in the future, don't expect to see those two doctors again.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby Polar Bear » Thu Mar 07, 2019 11:16 pm

Isn't it disgraceful that a doctor is put in this position.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby Rustsmith » Fri Mar 08, 2019 12:30 am

That is part of the reason why RLS-UK refused to get involved in either programs. Yes, it helped increase awareness and their is the saying about there is no such thing as bad publicity, but they missed an opportunity to do so much good.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby ViewsAskew » Sat Mar 09, 2019 12:29 am

Thanks for the info, both of you. Makes me both sad and a bit angry that they would film it this way.
Ann - Take what you need, leave the rest

Managing Your RLS

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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby badnights » Mon Apr 08, 2019 6:04 am

If I'm interpreting Betty and Steve's impressions correctly, at least we can be happy that people who watched it should now have a better understanding of what the symptoms are like - the torture. Even that is a step forward.
Beth - Wishing you a restful sleep tonight
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Rustsmith
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Re: UK TV PROGRAmME - RLS - THE NEW CURE

Postby Rustsmith » Mon Apr 08, 2019 12:51 pm

Beth, you interpreted our comments correctly. The show did a good job of showing what it is like to have RLS. The part that sticks out in my mind is a segment where the guy filmed himself on the couch at night and was flailing around uncontrollably with full body RLS. He said that this was unusual for him, which is where I realized that my RLS is even worse and how easy it would be to treat his problems with the proper medication.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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