The Illusory Truth Effect, or something like that

If you tell a lie, or a "theory" often enough, people will begin to believe it, despite little to no evidence. I'm the believer in this case. Despite being opposed to his soon to be patented Ecopipam, I bought into Clemens' theory of up-regulated D1s and down-regulated D2s, hook, line and sinker. It became Gospel. I never should have started down the augmentation road. A one trick pony needs to stay in it's lane.

I didn't even realize that all of the articles I posted about this theory were by him and his EUC colleagues. If you search the internet with the words "RLS, augmentation, D1 receptors" I believe you will only find, as I did, articles by him. Then within those articles he supports his theory by citing his previous papers. I am beyond sickened. I could not find a single article by Early, Allen (RIP), or Dr. B even mentioning this theory with regard to augmentation or RLS in general. His theory might be correct and logically speaking it makes sense, but he needs to do the long hard work of clinical trials and CNS imaging.

My theories about iron and what not remain 100% accurate, however. I don't have a monetary interest in ferrous bisglycinate...I swear. This guy has a patent on Ecopipam that he has declared will end augmentation. Such BS.

This makes me want to vomit all over my keyboard. earls.eu/blog/2021/5/9/the-...

I truly believe that this guy is hoping to make a quick buck off the backs of sick people. I work for the government, and I enforce HIPAA and the ACA. My job is to stop people like him. I will be deleting all of my posts that reference his theory. By the end of the day I will be signed out of here.

[WideBody]

I don't understand. You're leaving this group?

[Hidden in reply to WideBody]

No, just signing out to stop email notifications for awhile. Time to switch gears. As you know the country has gone bonkers. Can't even believe we're revisiting Roe, established precedent. We're 8 months away from the Primaries. I'm helping my friend Peter with his run for Ron Johnson's seat in Wisconsin. I believe that the 2022 elections might be just as important as was 2020 in terms of our democracy. I'll check back in after the primaries.

[WideBody in reply to Hidden]

Peter Peckarsky?

[Hidden in reply to WideBody]

Yes, he’s quite brilliant. He was by me for T-Day and it will be a very interesting race. Providing support here is important, but the next 10 months are very critical for our country. Plus, RLS is no ordinary condition (ie hay fever) you start out with the thought of doing 5 minutes of research then 3 hours later you look up and it’s 2am 😵‍💫

[bookish in reply to Hidden]

Please don't go completely, sometimes we all take a wrong turn and people can be very convincing when they intend to mislead. The point is that you investigated, thought, realised and made us aware. Don't beat yourself up about it. I value your input. I hope all goes well and that 2022 is a better year for you and yours. Best wishes

[Hidden in reply to bookish]

Thank you Bookish. No, not gone. Just expanding my horizon and helping a friend. You have made me, and other people I hope, realize how much power we have at our finger tips in terms of lessening the symptoms of RLS through manipulation of our diet and treating co-morbid conditions. We are sol sistas so I have to make sure you behave yourself.

[Bluebboat]

Yes please don’t go. Everything you write is interesting, researched, and challenging. Incredibly valuable on an open forum like this one.

[Hidden in reply to Bluebboat]

Me??? You!!! You’ve shown the forum that it is possible to turn back the clock on this condition. Sometimes I truly believe that our bodies and brains are more like silly putty (“silly” being the operative word) and that provided with some semblance of blueprints we can mold ourselves closer to the non-RLS world 🙆‍♀️

[daisyw]

Please don't vanish yet I'm nearly sorted persuading my GP practice to trial me on Bisglycinate. 14, 18 or 20mg is the decision to make :-). We don't have 25mg here.

[Hidden in reply to daisyw]

Omg, yes, please. I just got a reply from PoorRichard that he is doing better on the iron - provided he’s not just saying that to make me feel better 🤨

[daisyw in reply to Hidden]

He wouldn't do that😊

[DicCarlson]

I always enjoyed your posts - I'm in the same camp that says there MUST be a solution to RLS.

I just read a most interesting book "The Sleeping Beauties - and other stories of Mystery Illness" by Suzanne O'Sullivan. It's a fascinating treatise on many mystery "hysteria illness" including an affliction called resignation syndrome that inflicts young girls of immigrants in Sweden causing many to be in coma-like states for years! I even had the thought that some of my sleep difficulties might fall into this same hysteria category.

amazon.com/Sleeping-Beautie...

Keep the faith!

[WideBody in reply to DicCarlson]

I have had the same thoughts. It is my response to the feelings/urges/kicks that can make my symptoms better or a lot worse.

In the beginning I had no idea what was happening. My response could have been described as a panic attack. I would brace myself for bed. Now, I try to breathe slowly and calm myself.

Last night was the second calm night in a row. Even slept through the night! Progress.

[Hidden in reply to DicCarlson]

Hysteria is my middle name. I can’t even imagine a non-hysterical life. I wouldn’t want that. Sleep seems to be a lot of people’s Achilles heel. It’s one of the few things in life you can’t muscle your way into or out of. I can force myself to eat liver, but sleep….well you know. As my husband likes to say - it’s a mind f——

[PoorRichard]

LonePine - your advocacy of iron bisglycinate has been very helpful. Your voice is needed. We all benefit from each other. In other words, stick around!

[Hidden in reply to PoorRichard]

You don’t write, you don't call. I was wondering how you were doing with the iron and in general. So what are you saying? It’s helping? Plus, I have an article for you on rotator cuff surgery. Give me a few minutes.

[PoorRichard]

I am still evaluating the iron effectiveness but so far so good. I use it every other night. Plus, I am experimenting with reducing gabapentin at the same time (mixed results on that score). I got "permission" from my doc to try iron. And, get this, she was unfamiliar with iron bisglycinate. Interestingly, my average night time SpO2% is reading higher, too, which I've not seen anyone mention.