Search results

That is so twisted and warped of PG to say that. I do not know where to start.

Howard Schubiner, Recovery Norway and others. A river of money running through these videos.

Wow about 2 grand a month! Is it not chemically related to Amitriptyline which is 8 bucks a box? I have not read up on the evidence base yet.

I had it in about 2010 and all it did was make me feel sick. It had no effect on any ME/CFS symptoms. It doesn’t really feel like a stimulant to me. It is a bit questionable what in the brain it actually does. When it was released it was supposed to act on histamine but I think that theory has...

I agree with that 100%.

I understand what you are saying but from my perspective they are pushing a pseudoscientific recovery program that the reader will pick up on. Maybe the current situation is worse than what is in my head particularly regarding the BMJ piece but for straight ME/CFS I feel it is more being...

Quite desperate as well.

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.