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: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Indeed and I think the only and obvious coordinated reply to this silliness is to firmly note that he is showing how out-of-date he is with his knowledge if he believe this inversion to be the case.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...

I think these statements are relevant to the current thread on developing PROMs on the basis it seems the ethics statements claim here if patients fill out a service evaluation it’s fair game to get used later in stuff like this ‘research’ if this is going to continue to be the case then such...

100% agree on trials. In fact this should be over e.g. 2yrs follow up (and someone should be able to come up with a way it is a 'pattern' downloaded so that privacy issues and blips are ironed out but you can see whether e.g. 6mnths after someone thinking they are doing better they then enter a...

I’m sorry I haven’t read your comment in full yet (but looking forward to doing so when I have a moment where I’m better set up to make the most of it :) I did get a moment of inspiration on the actimeter bit as reading through that part of your comment (eg PACE) that one thing worth adding...

Well put

https://www.s4me.info/threads/the-process-of-cbt-for-cfs-which-changes-in-perpetuating-cognitions-and-behaviour-are-related-to-a-reduction-in-fatigue-2013-knoop-et-al.24643/ I note this one which is actually Heins et al (2013) but has Knoop involved, and you can scroll down to see they actually...

sadly I think whether there were patients doing it or not and whether their content was dry, scientific and helpful or something else there would still be these claims and suggestions made by said people. It’s misogyny the same misogyny that says girls end up think because the internet or...

Thanks Sarah, I did do a quick read of his page and noted these things - and nice to have you confirm he is a top bloke and you know him well. I assumed his focus on this would, as those papers were, be the psychometric scale part. I thought it would be nice to get a sense of what the...

Thanks that is an interesting point, and you've flagged that I've missed taking it from that angle - and one which might well have merit given that one of the things pwme can feel they fall foul of is because of the nature being 'energy limiting' they can lose everything and then still be...