A missed opportunity 😔

[Franciscophilus]

I was initially happy to see an article about RLS on the BBC this morning but was quickly disappointed they chose to give into sensationalism (I.e. abnormal sexual behavior) instead of focusing on a much more prevalent risk of taking dopamine agonist drugs; augmentation. There is a brief mention of augmentation risk in the article but way down into it, after going into great details on some people’s odd sexual behaviour. Really?

No mention of the AASM’s updated guidelines and warnings against DA drugs. No mention of more suitable alternatives. It sometimes feels journalists engage in little more than click baiting. I expected more from the BBC. A real missed opportunity to educate people on this terrible affliction.

bbc.com/news/articles/cgkmr...

[Kickabout]

Sex sells and if this is what it takes to get people to listen to us then we should take it.

Augmentation and the effects of DAWS is awful, but I can’t imagine how awful and life changing impulse control disorder must be. Let’s just hope it gets people talking and those in charge rethink the use of dopamine agonists.

[Joolsg in reply to Kickabout]

Agreed.

[Joolsg]

I totally disagree with you.

Actually it's a VERY good thing!As a result of the BBC asking difficult questions of the RCGPS and NICE- and these stories - there have been dramatic changes to UK teaching and guidance.

healthunlocked.com/rlsuk/po...

Dopamine agonists have NOW been relegated to last place as per AASM. This would NOT have happened if RLS-UK and the BBC had not co operated in getting these stories out.

[Joolsg]

And as a result of the BBC asking difficult questions of the Royal College of General Practitioners in the UK when investigating this very common side effect, the RCGPs have just announced they will be adding RLS to the teaching curriculum.RLS-UK have campaigned for over 7 years to get the RCGPs to teach RLS.

It takes public TV and news exposure to make them listen.

[Franciscophilus]

If something good comes out of this, I am all for it.

[Joolsg in reply to Franciscophilus]

It already has. In one day the BBC reports have overturned UK guidance & teaching.

RLS-UK has had many newspaper & magazine articles published in the UK over the last few years. But it takes the BBC to cause the medical establishment to listen.

So it's fantastic news.

In a matter of days NICE guidance now adopts the AASM latest guidance and the RCGPs has added RLS to the teaching curriculum.

I'm ecstatic.

And hopefully the BBC will now concentrate on the scandal of augmentation and doctors will learn how to get patients off these poisonous drugs.

Pretty sure Big Pharma will be furious....

[Typicallygaslit in reply to Joolsg]

I have just cancelled my TV license so can’t stream the shows on BBC but I did see the article. I’m in the process of appealing PIP and feel a lot more confident to drive the RLS/insomnia issues which were completely ignored by the GP that filled in the PIP questionnaire despite my diagnosis, not to mention I will complain to my trusted GP about that doctor, too. He will most certainly have seen THESE news stories, hooray! Doctor no 1 refused to look at the Mayo algorithm because it was ‘something American’ and did not wish to offer any treatment whatsoever and was enamoured with some doctors’ reports that suggested my problems are ‘all in the head’. I had previously tried Ropinirole but was very sick from it… this sure gives me more fuel so I’m very thankful.

[Madlegs1]

You are absolutely correct in all that you say.

However- the article has had a huge effect in changing policy - and ,in the end, if the End justifies the means ,then we have to accept that this is the way to achieve change.

Sex sells !!

Just look at the success of Anora in this years Oscars. Pure glorification of hard porn gets results.

Unfortunately,it says something about the way the world is going.

And , like you, - I don't like it.👍☘️

[Firenze1 in reply to Madlegs1]

This is brilliant news! Only last month I had to educate my (lovely) GP on Ropinirole as the neurologist he had referred me to suggested I take it. Been there, done that...I totally agree with you and don't like the way the world is going (and don't even get me started on Anora 🤨) however a breakthrough at last and people are starting to sit up and listen

[Seaview20]

Yes I had all the same concerns as you and still have, but overall I agree with Joolsg. The things gained and changes wrought outweigh the sensationalism of the coverage.