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Bit of a side note (now I’ve checked) but I remembered reading about a place people with me/cfs apparently went to live because there was a treatment offered but they needed to be in town etc years ago so looked it up just in case it was this one but it isn’t (it’s one in Invline Village Nevada)...

Says a lot about what’s behind all this that we’ve got Mintel studying it ‘as a market’

It says 'the full report is now available' in this but I'm struggling to actually find it - I don't know whether it is the first link at the bottom because it doesn't translate for me

This is above my head a bit when reading, and I'm not quite there really on assuming ME/CFS is necessarily a state of hypometabolism/hibernation this is an interesting read for putting different aspects out in different sections. Towards the end in section 26 it was interesting to see slightly...

Good point, the BPS/psychosomatic aspect is probably the one simplistic bigotry of a 'part of medicine' that it can be mimicked and become hard to tell troll from professional - which sort of says it all about its scientific integrity, non-complexity, who it's attractive to and why, and where it...

Agree, we need trope lists. And the medical profession is bad, but it is spreading into other organisations too and is quite astounding when you compare the level of trope vs equivalent for e.g. what that would be re: race or gender or age and so on. In its totality this is 'rounding-on' a...

I’d say reasoning is intact but it’s executive function/working memory vs load. the classic issue is just to add in any multi tasking or multi sensory - which for us we might already have by virtue of our symptoms and environment that day. but not if someone distracts me mid sentence with a...

Hmm I can't get past the story of Linda Evangelista albeit cyrotherapy for fat reduction rather than inflammation or here the other suggestions being neuro it seems there is risk of it backfiring which was apparently rare but how do we know. As it is paywalled I can't even tell if these are...

:thumbup::laugh::laugh:

Yes well given the area has people who suggest it is essential to diagnose those who have Creuzfeld-Jacob disease with FND in their final months leading up to their death (EDIT: without/instead of looking into and finding they have Creuzfeld-Jacob when maybe it could have given the some time to...

Indeed and I think the only and obvious coordinated reply to this silliness is to firmly note that he is showing how out-of-date he is with his knowledge if he believe this inversion to be the case. I do think that people reinforcing, continually, that those who still claim CBT or GET to be at...

Really not an expert at all but I will say it would be useful if this provides a better terminology framework for describing when mitochondrial function is affected and yet (given it is one of those 'tropes' people are primed to think we are stupid enough to be meaning) the mitochondria aren't...

Yep, if this was actually an app being used to show how distorted thinking happens, and was being used to show how bigotry occurs - and then unpeeled people's bigotry and distorted thinking ie to wake them up to what they were doing then it would be a great start. It seems that bad. I mean you...

It is just disability bigotry being justified isn't it by someone convinced, utterly to the contradiction of not being able to see facts or what is in front of their nose anymore, their presumptions which stop them from subsuming knowledge must be correct - based only on 'I must be smarter than...

I seem to remember watching a programme about iceland's genetic databases and them being a frontrunner for this area. I just wish I could remember the specifics - it was at the time of covid, but I can't even be sure whether the programme specifically related to that at any point. Anyway, so...

I'm really glad that you've been involved in this and bring that on-the-ground experience. I find/think the work towards developing physiological measures in a home environment one of the most important things in making sure we get to the bottom of the condition, but imagine it isn't 'the easy...

Thank you for confirming Sarah, it is interesting to just help try and get my head around/picture it. The more I think about it and try and do so the more complex I realise it all is for you :)

And there are big gaps there should not be just in as far as having a 'register' of those with ME currently and shockingly. We don't know 'how many', or even the amount who might need certain really serious interventions or different severities. We certainly don't have a log of prognosis or of...

It's also potentially 'entryism' https://en.wikipedia.org/wiki/Entryism particularly when you think about the tendency of those from BPS background to focus on climbing their way up through the committee and admin positions and collecting power. but I know what you are getting at and I...

It reminded me of this too @Arvo coild you write back and ask them to provide proof of when the decision was published? surely the 6 weeks can only begin once people have been able to see what decisions have been made - so their confirming and proving when these were published and access...