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This was about 6years ago. I do not know long term what happened. I remember they were going through 1 bottle every 10 days. It was taken during the night and was changing sleep architecture (supposedly). They were functioning better during the day and working.

I know of a person who has Me/Cfs and not narcolepsy was placed on Sodium Oxybate in the USA and was in a better state on it. They came to Australia. To get it approved in Australia it has to be ticked off by a board and then you have to pay about $600 every 10 days on standard doses. They...

Yeah, i always thought is was something damaged in the brain to do with sleep because i have never made much improvement over 20 years. But how the symptom PEM would fit into that is a confusing worry.

If anyone can answer. Does Decodeme point towards or away from a narcolepsy style brain damage to something similar to orexins but with a maybe an opposite effect in ME/CFS patients? Meaning a sleep disorder but different to orexin? Is that type of damage off the table because nothing has been...

Say it was a broken neurological feedback loop. I just cannot believe that any drug currently available that affects anything in the brain would not be able to shift symptoms in ME/CFS people. Surely there would be one psychiatric, narcolepsy or neurological drug that would have gained a...

Oh dear god!

Sounds like it is going down the path of Lorimer Mosley’s ‘protectormeter’ theory. Two of the authors are at his unit in South Australia university.

That sounds truely fascinating and frustrating at the same time. I think I had that drug for a short course and don’t remember anything good.

There was a Sodium Oxybate study for Me/Cfs that was supposed to get underway in USA a few years ago and it never came to be. I have heard of some Americans with ME/CFS being prescribed it off label and some have a better than normal outcome. Obviously there are issues with dependence if it was...

I doubt that very much. Lorimer Moseley’s main grouse is thinking of pain as a thing that can be controlled by the patient( he gives the example of alcoholism). He promotes ‘danger in me’ dim, Safety in me (sim) where the patient should reframe a bad feeling when confronted with movement or an...

That was my thought that Conti has missed the point a bit.

Response from Pio Conti https://www.qeios.com/read/724UCE

This is probably right. There is an alternative clinic run by a few GP’s in the most wealthy suburb in Melbourne that uses naturopathic/homeopathic remedies that they sell and also a pseudoscientific blood testing unit. The place is booked solid and based completely on fringe medicine. I know...

100% with you there. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370610

Hi,DHagen I was in a study for Multi vitamin, ALA, NAC, ACETYL L carnitine (without Malic Acid) in high does for Me/Cfs. It didn’t do anything positive, I probably deteriorated. It is a bit of a worry that they are recommending the MitoCore product. More widely, I don’t think there is any...

It is a scam dressed up as evidence based medical treatment. Most ‘intergrative doctors’ push the regulatory boundaries the same way.

A odd character is an understatement. The shocking 2002 Australian GP guidelines did enormous damage to ME/CFS patients down under which basically cast us aside from medical treatment. The 2006 Dubbo study was published and made a big impact but soon after he was referencing Peter White and...

A ‘Sleep Specialist’ was on morning tv in Australia recently talking about better sleep tips wearing a white coat... She sells mattress’s.

Interesting article on how ‘Central Sensitivity Syndromes’ evolved by Rheumatologists Milton Cohen and John Quintner from 2018. Seems this theory has fallen away somewhat in the last few years. ‘In 2007, Dr Mohammed Yunus from Illinois noted that a number of diverse, medically controversial...

Response from Caroline Struthers. https://www.qeios.com/read/9TAZ6R