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Has anyone on S4me ever responded positively to Aripiprazole? Interesting to know anyone’s thoughts. The other 3 substances I doubt will do much.

Surely giving these specific practitioners airtime on a science forum is not a good thing. One specific German lab diagnosed a young Australian girl I knew and she had never been bitten by a tick. She was really ill but it was not Lyme disease.

No, just that it didn’t alter fatigue and made people feel sick in the stomach. Apparently Andrew Lloyd couldn’t get enough people for his study. It was explained to me that a small subset of me/cfs with daytime somnolence are the only people who respond to Modafinil. The PEM monitoring is...

I have never heard of Modafinil or Amordafinil being used for ADHD but it was used for Me/cfs when prescribed off label and it was basically cast aside as not helpful. There was an Andrew Lloyd study planned about 10 years ago that never got off the ground. Not sure why.

Z drug hypnotics are the only drugs that have helped my sleep

I don’t think a guideline should point to a particular therapy without decent evidence of safety and efficacy. But the worst possible outcome would be for a doctor or guideline to ban doing anything for a severe long term patient where there is no hope and death is likely. Trying a drug therapy...

Funnily enough I was told exactly this a month ago. The doctor brought LDN up, said it was a bit of a desperate move but they have a rheumatologist that can trial it with me if I wish because it is pretty safe. It and others should definitely be on the table if the safety profile is ok and they...

As a refresher of the criticisms from 2011 about the use of Rituximab for Me/Cfs a letter to the editor is below from Jos Van der meer, Andrew Lloyd, Alistair Miller . https://journals.plos.org/plosone/article/comment?id=10.1371/annotation/43f3e6a8-cf7d-4438-8b97-b21b9c31bf5c

Are you referring to Suvorexant or Daridorexant?

I wonder if professors Daniel Clauw and Andrew Lloyd are still involved with Coffi. I am not their biggest fan but this seems a bit desperate, unscientific and silly even for them.

Regarding the lack a patient uptake- It is the lack of common sense that is most baffling from the researches. If they cannot get the result they were hoping for then they put it back on us. Really??

My institution allowed me to complete one subject a semester to finish my degree. Most universities would probably give you the boot. Looking back I was lucky I had good medical evidence.

My 2 cents worth. Unfortunately gabapentinoids don’t do anything like that. They may ease suffering during a crash at best.

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.