My comments on the TV programme

[Pippins2]

So now I have had 24 hours to re watch the programme and reflect. I know the film company are wanting constructive feedback so here is my two cents worth

Firstly I think it was amazing that a film company showed interest in doing a TV programme dedicating a full hour to RLS. As far as I am aware it was a first of its kind.

Well done to RLS -UK for your part in bringing it to our screens.

A massive thankyou to the 4 sufferers who were brave enough to take part. A good cross section of subjects were chosen one with what appeared to be mild symptoms, one with moderate symptoms, one with severe symptoms and one with severe PLMD and subsequent memory loss.

There's no doubt that the programme showed the human suffering this dreadful condition can cause. I know that a greatnumber of new members joined here and thousands visited other sites.

However where it fell short was the lack of even the most basic of scientific information. I understand that medications cannot be discussed in detail. It seems the doctor spoke to camera for 2 hours but didn't have any final say on what was broadcast and what ended up on the cutting room floor

Just 10 minutes at the end of the programme stating that it is Neurological, genetics, pregnancy, can effect other parts of the body and that although there's no cure there are many treatment including meds and non med available to help. To give viewers who didn't know there was a name for what they were experiencing some hope

So all in all it was a start, thankyou to all concerned for raising awareness but unfortunately an opportunity missed. X

Pippins2 x

[Kaarina Administrator]

Thank you, Pippins. Much appreciated.

[Hidden]

With all that goes into RLS they could have made a short series ep1 What is RLS and the persons fight ep 2 the family struggles, ep 3 coping strategies ep 4 the GPs view, (highlighting lack of knowledge and resources) and ep 5 drugs and prescribed treatment and problems with such. All the way through you show the severe side with some shots of kids thrown in to juice up the sensationalism and bang a sure fire hit!

It really should have been easy to get that all in that one documentary. The characters that were in it felt caricature rather than typical. They are not the type of people I have ever met with RLS as they seemed to have little to no knowledge of what was going on and didn't appear to be exercising any of the tried and trusted methods we all use on here, (hot baths, exercise, stretching, food exclusion, etc). They don't ring true to me as a representative sample. No one with life long RLS and no one with full body RLS. No mention of the problems with pensions, work, benefits and Drs.

I will say I have never seen so many people active on here so it has brought it to peoples attention but a bomb in a bin would have done that!

[Hellabella in reply to Hidden]

I got the impression they were actors.

[Gmc54 in reply to Hellabella]

Some of it was definitely staged.

[oolala in reply to Hidden]

I had waited for this -eager to see it ..but was disappointed by the programme - maybe they can do another with more information and a different group of people

[cumoneileen in reply to oolala]

I also looked forward to program very disappointed. could relate but no answers. no meds. mentioned, and why sit in agony? I cannot sit down when my legs start I have to keep moving. Had a day out yesterday a meal and 2 GLASSES OF WINE. I knew I would suffer, walked the house until 4 45am. My last chance, seeing a vascular consultant ringing for my appointment tomorrow. I have seen everyone now. If he cant help my options have run out. Have suffered for 50 years. Got worse as I got older.

[Meritus in reply to cumoneileen]

I only caught the last 10 minutes but it sounds like it is the same programme I saw on Ch 5 years ago which was shallow and sensationalist. We need more experiences of natural remedies such as horse chestnut drops, magnesium citrate and b6 (P5P) but the best remedy I have found is Restiffic foot wraps but this was blocked, possibly because this forum does not publish brand names. They were invented by a woman doctor with RLS.

By the way, before I even knew what rls was I used to jam my foot under the fridge or in a door, so maybe the person on the show was not making it up!

Please HU and RLS UK do a test with the natural remedies and ask for experiences with named products that are more effective than pharma drugs.

[Mopsy1950]

Hi Pippins I worked out 23hrs difference to nz but still missed it b------- there seems to be a lot of different reactions to this documentary hope I get to see it somehow

[Madlegs1 in reply to Mopsy1950]

Mopsy- don't bother! You've got a good idea of what it was like from the posts. I'm telling my daughter in Wellington not to even try getting it and they have internet tv which would be a doddle to find it through Raffs methods.😧

[Hidden in reply to Madlegs1]

I had planned to get it for a couple of family members but have decided against it.

[Mopsy1950 in reply to Madlegs1]

Ok thanks

[Madlegs1]

It must be very disheartening for all the workers in RLS UK to have all this happening. But as Pipps has pointed out- it has created a great interest.

It is impossible to control tv programmes because they don't give editorial oversight easily. Also their aim is entertainment - not investigative.

Maybe you remember an investigative programme about a year ago into pain medications? It was done well but again was very weak and disappointing - the guy was trying to reduce antibiotic use- but was utterly ineffective and chose quite unsuitable candidates. This elicited the same sort of conversation on " Pain Concern" as this programme has here.

There are medical programmes out there presented by genuine Drs - it seems to me that would be the way to go.

The not being able to mention drugs is a cop out- all drugs have scientific names which could be used. Even to have mentioned the possibilities - as others have talked about- would have been very effective.

I know how the film production world works.. Controversy sells/ gets the ratings. Serious stuff is a turn off. That's modern journalism. Just think Legsit/ Brexit- says it all.

But- as I've said before - it's got people talking and" coming out"

And no one has died.😯

[Hidden in reply to Madlegs1]

Spot on.

[Daragh in reply to Madlegs1]

Hi madlegs1, thanks for you kind comments. We have had over 10,000 people find us as a result of the programme and that is a huge positive. We are of course disappointed that some areas we would liked were not covered but such is life. Ultimately we have had thousands of people find us, hundreds of emails, over 500 new people on our Facebook page and (thankfully) people like you who have recognised the work that we do as volunteers. That's enough to motivate us all to continue the fight!

[LoisTonya]

Showing four peoples symptoms could been a much shorter programme. Wasting the opportunity, in an hour long proramme, to give more information on the condition is a shame. It was said that a large number of people suffer from rls at some time in their life. Giving more details on this temporary rls would have been interesting.

[bedith6]

I too thought the programme lacked some of the content I was hoping to see. No mention was made of any on going research into the condition or possible new meds. However yes, it was a brave attempt.

[Pippins2 in reply to bedith6]

Hello Bedith how are you?

Pippins2 x

[maddymac66]

Hi Pippins, I did a post immediately after the programme because I felt that it wasted a valuable opportunity to enlighten sufferers and non sufferers alike but have seen no comments from other users on this site Yours is the first I've seen. I was very disappointed because causes ,treatments and any research or trials being undertaken were ignored. More input from the very knowledgeable people like yourself, on this site,would have made for far better viewing. .