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It's not just cortisol. Adrenaline also becomes dysfunctional. And while it's convenient to blame that on patient's I have often experienced this adrenaline instability in the middle of the night when there is no situational stress present (except the stress of waking suddenly from a pounding...

I have been very critical here about many things including AfME. But my position is to take it one day or one action at a time. I think there has been real change at AfME with how they view BPS treatment of ME. If they go in with the idea of compromise then for me that will be a piece of...

I don't think you'll get anywhere but thanks for the effort. They've made it very clear they think that these conditions are 'very different'. So I expect this means that people with LC can expect to be gaslit if they don't recover as per the therapy that worked so well for CG and PG.

Ah, Zen and the art of the deliberate IT snafu.

I don't know if this is posted elsewhere but it gives some overview of what the Japanese ME association is trying to accomplish for ME sufferers there: https://mecfsjapan.com/

BACME conference 2020/1 - creative approaches in CFS/ME services - rescheduled to 11 May 2021 Just a few tangential thoughts on AfME attending: There are times to work from inside and times to not. IMO things have gone badly in the past because of a mistaken belief in compromise which is a...

It would be great if someone did tests related to hormones and how they are affected (if possible).

Yeah, can that be ANY more vague.

I had no idea that the recovery number was so low. My thoughts on a study are moot if this is the case. Although I couldn't find (not saying it's not there) information on how long people were followed nor if the people responding were captured at the beginning of illness (though I assume this...

They were done subconsciously though not IM. I think you mean subcutaneously.

Just a few observations / thoughts I don't know anything about this technology but do wonder if doing this type of examination requires the researcher to make a lot of inference / interpretations of what they see based on some assumptions. If so it would be useful to know that and what they...

Also, I'd just like to add that any such study would need to be large and longitudinal out past 5 years. Covid I think offers such an opportunity.

It's a rather ironic accusation since the BPS have never been open to the idea that the primary cause and need for treatment is a biological one. ALL of their research is a testament to that. They take as 'proof' that ME or MUS are all psychosomatic the fact that up until now there has been no...

They have started a debate between to alternatives the premise of which is wrong. The issue isn't is it physical or psychological. The issue is for those who get lingering post-viral symptoms how many will recover without ANY intervention and how many will remain ill. For those who remain...

An excellent point that I hadn't caught. Exactly who are these communities of people recovered from illness? And why are they creating them rather than just getting on living their lives? Seems like a waste of recovery if you're purpose is to spend your time going on and on about...

There are books with chapters on what GET is written by the people who started it all. https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/6.get-participant-manual.pdf

So, they mean social-psychological like hormones then. Oh wait . . .

Quotes from the details on NIHR site. So they already know what they will find. No need to consider neurological symptoms as, a) they will not show up on scans, b) if they are on a questionnaire they will be interpreted as mental phenomena. Uh, that is highly unlikely. Love how the answer...

Sounds like whining to me. Theoretically: A study was done on MS that included anyone with long term fatigue. How valid / applicable were those results to MS? A study was done on people with alzheimers that included all people with cognitive fog issues. How valid / applicable were those...

It was good of Busse to put his name to this. Now he and Prisma Health, Canada and McMaster are on the radar as part of the clusterfuck that is policy based evidence with no science in sight. @ScottTriGuy and if there are any other Canadian people online who could look further into this. I...