Latest News From RLS-UK

[Joolsg]

rls-uk.org/news

[Huntingleroy]

Oh my life that is amazing news !

[Joolsg in reply to Huntingleroy]

Isn't it? Funny how NICE guidance and RCGPs do a 180⁰ turn around as soon as BBC start asking questions....

[Huntingleroy in reply to Joolsg]

Mmmmm very strange !

[Jelbea]

This is wonderful news. Congratulations to you for all your hard work and determination to get this horrible affliction and dreadful DA drugs acknowledged. I am so pleased for your success and I sincerely thank you and indeed all the others on the site who have contributed in any way. WELL DONE😊😊😊

[Elisse3]

That is amazing news at last people are listening to us. 😊

[Joolsg in reply to Elisse3]

It takes public shaming to make them listen sadly.

[Elisse3 in reply to Joolsg]

If that what it takes then so be it. 😊

[smilingjane]

Thank you for posting Jools'Exciting' and relieving to see this coming out in the open x

[Kakally]

👍👍👍

As I said recently, things are moving slightly in the right direction . Particularly great that DAs are no longer first line. BUT so many things are still wrong in the guidance .

The sneakiness , as you say Joolsg is very wrong and without shouting it to the rooftops and at the very least informing RLS-UK and GPs’ journals , neurologists’ journals and medical schools so students can at last start to be taught at least some of the correct management.

Basically they know they have been ‘found wanting’ and are going to endeavour to avoid open discussion about how this DA debacle should never have happened. There were warnings as far back as 1972…and things went very awry in the ‘noughties’.

Pharmaceutical companies, FDA , MHRA and some senior clinicians are to blame and will never own up.

DAs will be around for many years to come

[Joolsg in reply to Kakally]

May they hang their heads in shame for the suffering & distress they have caused.What's sad is that I used to trust my doctors. Mistreatment has now made me very wary. I research and question everything now.

[SueJohnson]

That's terrific!

[Mulberry100 in reply to SueJohnson]

Can I add my heartfelt thanks to all those who give your time and energy keeping us so well informed and hopeful that, one day, there could be a cure. Just to be given airtime to discuss DAs and the damage they have caused, (not to mention that for many of us have destroyed our receptors to more current medication) feels very positive. Once again thank you.

[LotteM]

Very well done, especially to you personally. I suspect very strongly that you were the initiator and motor of getting things rolling and reaching this point. 💙

I noticed they ‘baited’ with the sexual behaviour but clearly included not only gambling and shopping compulsions, but also augmentation. That is important.

[Joolsg in reply to LotteM]

Baby steps. There's still such a long way to go. But this gives some hope.

[Kakally]

well done Joolsg on the BBC South Today programme. You did well.👍👏

Hopefully that and more tv and other publications will keep the momentum , preferably including the sins of the giant Pharma , MHRA, FDA etc

[Joolsg in reply to Kakally]

😊

[Jumpey]

Well done!

[Noddedoffagain]

Brilliant news !