RLS Article in The Lancet: Lotte... - Restless Legs Syn...

Restless Legs Syndrome

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RLS Article in The Lancet

Joolsg profile image

Lotte, Involuntary Dancer and I wrote an article on the benefits of educating the medical profession on RLS and it has been accepted and published in the September edition of the Lancet.

We have also spoken to the US foundation and they are hoping to write about our efforts

We will also be trying to publicise the article through PR contacts in health magazines and newspapers.

September is RLS awareness month and 23rd September is RLS awareness Day. Please feel free to forward the article to help raise awareness.

Jools

thelancet.com/journals/lane...

54 Replies

Congratulations, I am quite impressed. Nicely done!

LotteM profile image
LotteM in reply to WideBody

Thanks WideBody. We are elated and so were the people from the US rls.org organisation. As they have a large audience, them featuring the article will definitely add to its impact.

The link to the article can be copied and forwarded, but the article ("correspondence") can also be downloaded as pdf for free. We discussed, and enhancing awareness and recognition is as important as training doctors.

Spread the word!

Excellent article with a powerful message, just perfect 👌

Kaarina profile image
KaarinaAdministrator

Most certainly will spread the word. Impressive. Very well done you three. This is brilliant. Congratulations. Yay!

Thanks all. We met via this forum & have always shared research articles so this was the next logical step. Let's hope it leads to more awareness amongst the medical profession and better treatment

Actually, I want to thank each and every member of this forum. Issues and discussions on this forum have instigated and fuelled the article. This forum is a well and wealth of information and inspiration. Keep it up.

Well done all 3 of you.! Concise, to the point, well written and competently presented.

Onwards and upwards!🌟

Ta very much Madlegs. We will keep going.... & you can start the jokes about an English woman, an Irish woman & a Dutch woman go into a bar....

I was going to say - not bad for three 'wans' - but was afraid of getting a belt over the head with a #metoo banner!🥵Respect to you all.😻

Well done tothe 3 of you ! Brilliant news. Thank you for your dedication to getting more done for us all. ❤️

Great article and thank you so much for all your hard work. Many congratulations on getting it published. 👏👏

Well done Jools, Lotte and Involuntary Dancer! It's a real achievement getting published in such a prominent medical journal.

Thanks for drawing attention to this very important issue.

Thank so much for all your input into this forum. The advice I got here literally saved my sanity. And now you’re telling the medical profession what’s what! Amazing.👏🏻 And you know, they’re only people too. They don’t know what they don’t know if they’re not told. Here’s hoping they listen and learn🤞🏼

Excellent piece. Thank you for the time and energy you have taken to put this article together and convince people to publish it.

Well done. It not easy getting something published in a medical journal

Thank you and well done..no mean feat!

Well done for that initiative, hope it produces results!

Huge well done and a massive thank you to you all.x

Fantastic. I am sure this will make a difference in awareness and treatment going forward. I am going to forward it to my GP.

Munroist profile image
Munroist in reply to Munroist

And THANK YOU!!

Well done Joolsg et al, hopefully this gets a key influencer or two motivated to do something

Well done!

Great article but how many GPs read Lancet Neurology?

Joolsg profile image
Joolsg in reply to Kidneyenq

You're right. They don't seem to read the NICE guidelines or the NHS website either. I've contacted one of the largest GP training companies but have been ignored so far. Will chase up.

Kidneyenq profile image
Kidneyenq in reply to Joolsg

I’ve had a reasonable result from my GP by contacting them using e-consult, naming the problem (RLS) and then referring/linking them to NICE. When you see a GP in person (remember that?) about something they know/care very little about, they will usually give you the brush off rather than admit ignorance. This doesn’t work for those patients who don’t know about RLS. Sad.

Joolsg profile image
Joolsg in reply to Kidneyenq

It is very, very sad and heartbreaking. It's a huge issue and it feels like we're chipping away at a huge mountain with a teaspoon. However, we have to keep going. I am now sleeping 8 hours every night for the first time in decades because of this forum and the help and advice of other members. I'm also lucky that my new GP is open to reading the research papers I send her. I'm aware that others are still suffering horribly. Every RLS help forum and FB group is full of people suffering and not getting the right treatment.It's why I asked RLSUK to back the campaign to get RLS on the teaching curriculum for medical schools and GPs. As usual, lack of funding is the problem.

Kidneyenq profile image
Kidneyenq in reply to Joolsg

Congratulations on getting a publication in an academic journal. It would literally take a couple of minutes of lecture time to mention RLS in the context of learning about the dopamine system. I am not sure what extra resource would be needed. I think that there is another reason for this omission.

LotteM profile image
LotteM in reply to Kidneyenq

It is not just mentioning RLS. It is taking RLS seriously. By the time people contact their gp or pcp their symptoms will most likely have moved into the 'severe' class. But all official treatment advices start with no coffee and alcohol etc (which doesn't aggravate MY rls), stretches, movement, sleep hygiene etc. All very valuable but often that ship has sailed.

Slipslopslap profile image
Slipslopslap in reply to Joolsg

Hi JoolsgWhich ‘magical’ medication gives you 8 hours sleep each night?

I haven’t been able to do that in years!

It would be better than winning the lottery!

What do you take to get 8 hours sleep.

Joolsg profile image
Joolsg in reply to Runedrun26

Please see reply to slipslopslap. 0.3mg Buprenorphine. Also available under brand name Temgesic.

Runedrun26 profile image
Runedrun26 in reply to Joolsg

Thanks for getting back to me.stay well.

Joolsg profile image
Joolsg in reply to Slipslopslap

Shumbah posted 2 years ago about flying to USA in desperation after Oxycontin and pregabalin weren't helping. Dr Glen Brooks prescribed low dose Buprenorphine and it completely resolved her RLS.Several others then tried it with great success.

I was too scared to ask in case it was refused but 7 weeks ago asked my GP and she agreed.

I've posted about it and should point out it doesn't seem to be effective if people are still on Dopamine agonists.

It caused extreme nausea for 10 days but I then used my medical cannabis oil and it resolved ( think my body also got used to it). After 3 weeks I developed panic attacks but was expecting them as I'm very sensitive to opioids. Adding 50mg of pregabalin has stopped them.

As an aside, RLS is a big problem in those with chronic kidney disease (CKD). The probable reason for this is that with CKD the ability to excrete creatinine from the blood is diminished. The efficiency of the kidneys declines in all of us as we age. I don’t know if there has been a study correlating RLS with age/blood creatinine levels.

Joolsg profile image
Joolsg in reply to Kidneyenq

I have a close friend who had kidney failure and RLS. She received a kidney from her husband and it disappeared.There are definitely different causes for RLS. Kidney disease, anaemia, spinal damage but we need more money and more research to find those causes and the reasons.

Thanks for doing this xxx

Thank you!

Thank you for this. Hopefully the neurology consultants will read this and take note.

Fingers crossed🤞. The head of training at the Association of British Neurologists is aware of the problems and has been very helpful. However, he pointed out there's a serious shortage of neurologists in the UK.

I'm due to see my neurologist in the next couple of weeks. I think it will be a different person than whom I've seen for the last umpteen years (retirement). However he was the one that took me up to 4mg Ropinirole and then prescribed Pregabalin to cope with the augmentation ☹️I'm much more aware now and am probably what Manerva called an Expert Patient..

Thank you all so much for writing this article and Congratulations for getting it published in the Lancet.

Thank you so much for doing this! It is amazing how rls is not taken seriously by so many doctors! In my opinion it is life threatening, almost as bad as sleep apnea. There is all kinds of help for that.

Joolsg profile image
Joolsg in reply to Nosleepatall

Exactly. I have advanced, serious MS and it is NOTHING compared to RLS.

Thanks for doing this. I don’t know why, but I can’t get the link to open, nor can I copy it.

Joolsg profile image
Joolsg in reply to MumofSam

Just try googling The Lancet September edition. You may find it that way if you can't open the link.

MumofSam profile image
MumofSam in reply to Joolsg

Tried but more than one issue and can’t find the article

Joolsg profile image
Joolsg in reply to MumofSam

Volume 20 The Lancet Neurology. September 2021. The heading is A Call For Better Training in Restless Legs Syndrome.

Kaarina profile image
KaarinaAdministrator in reply to MumofSam

I have just copied and pasted the article and sent it to you via Private Message. Hope that helps.

MumofSam profile image
MumofSam in reply to Kaarina

Got it, thanks 😊

Brilliant work well done let's hope it helps . This site has helped me alot I'm so grateful

Thank you for your help over the years and for the fantastic work putting the article together. Brilliant!

To all who read this post and did or did nit reply. We appreciate your "thank you's". What we would appreciate more is if you would copy Joolsg example letter and send or give it to your gp, and send it to the various organisation directly or tangentially involved in medical training. Not only doctors, but also nurses. This is far easier than what we did; it just takes a bit of time and paper. Or access to email.

I hope this is the correct link to Jools'post about the campaign. Please DO people, WE (including you) need it. Recognition and up-to-date knowledge.

Kaarina profile image
KaarinaAdministrator in reply to LotteM

healthunlocked.com/rlsuk/po...

Joolsg profile image
Joolsg in reply to LotteM

🙌

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