RLS-UK AGM HELD ON 7 OCTOBER 2023

[Kaarina]

Thank you to all who attended the AGM, both online and in person. We were delighted that so many members and their family, friends and partners were able to join us. This was a great opportunity to increase our knowledge, thanks to engaging information from the two excellent speakers and our Chair, Dr Julian Spinks. The speakers were Dr Jose Thomas who is a sleep specialist from Wales and Professor Matthew Walker, a Neurologist based in London.

Informative discussions took place with as many questions as possible answered. A detailed report of the meeting including summaries of the lectures will be published in the RLS-UK members Winter Newsletter due out later this month.

[Joolsg]

It was great to meet so many people at the AGM and tell them about this Help Forum. Some were unaware it exists, despite the RLS-UK website containing a link.Hopefully, more members of this forum will join RLS-UK and help us get RLS on the medical curriculum and NICE and NHS guidance updated.

Thanks Kaarina

[Kaarina Administrator in reply to Joolsg]

Should anyone wish to become a member of RLS-UK you can join on line rls-uk.org/rls-uk-membership

You will then receive a detailed report of the meeting including summaries of the lectures that will be published in the RLS-UK members Winter Newsletter along with other news due out later this month.

[lamujer in reply to Kaarina]

Thank you for the feedback Kaarina and Jools, have used the link to join and look forward to reading the Winter newsletter

[Kaarina Administrator in reply to lamujer]

Thank you very much, lamujer.

[LotteM]

Good to hear, Kaarina and Jools. Anything new that came to the surface during the meeting?

[Joolsg in reply to LotteM]

One shocking bit of news was that Professor Walker produced a paper from 1953, 70 years ago, that showed iron infusions dramatically improved RLS.Horrifying that this has been known for 70 years, yet forgotten about and overlooked.

He also said that iron supplements are best taken in the morning, not at night, because hepcidin levels are lower in the morning, so more iron can be absorbed.

[LotteM in reply to Joolsg]

Shocking indeed! It is also shocking that most RLS research focuses on treatment, whereas the cause of RLS (BID) is hypothesised but still elusive as how it comes about.

Hm. Iron in the morning. Did he elaborate? And e.g. comment on the empty stomach part, as that is far more difficult in the morning. Personally I like to start with a good breakfast.

[Joolsg in reply to LotteM]

No he didn't. It was a long, detailed talk. He did recommend taking it with Vit C though.

[SueJohnson in reply to Joolsg]

It is certainly true that hepcidin levels are lower in the morning, so more iron can be absorbed, but that needs to be balanced by a study that shows that iron is taken up by the brain from the blood at higher rates at night than in the morning. Also one is less likely to notice any stomach upset.

Also SalemLake has found that at least for her and some others that simply taking iron at night helps even if ferritin isn't raised.

[Kaarina Administrator in reply to LotteM]

That bit of news stuck in my mind too what Professor Walker said in his talk about iron.

[HappyGreenBean in reply to Kaarina]

I've seen Prof Walker and he recommends iron to his patients now! And, he recommends an iron infusion if iron is too low. He made a point to tell me that without iron, dopamine doesn't work or access parts of the brain required to turn off RLS. These are my words, my understanding of what he told me.

[SueJohnson in reply to Kaarina]

See my reply to Joolsg

[Simkin]

I was so sorry to miss the AGM this year but we were cruising up the Danube!Glad it was a success.

[HappyGreenBean]

Ooooh, how did I miss this?! I would have really enjoyed it. I'll sign up now, I thought I already had!

Thanks so much for all your hard work.