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Yeah well, the fact she hasn't mentioned external validity, just the tools themselves is concerning. Psychometric doesn't mean much, we want to know what the weightings actually are. Basically if she is claiming that isn't necessary because she think she is doing something clever like using that...

from what I've heard of them then an adult version of TRACCS sounds like the opposite of what pwme need , particularly the very severe. But maybe I've read between the lines wrongly?

I'm with you @Trish - it is a real surprise from these charities and not something I think that they have been given mandate for by those they represent. Although I think the reaction so far to the situations makes those situations very different indeed. It would seem we are looking at BACME...

I can relate. :hug: I used to when I was moderate and still working have office days and work from home and could sit in my bed or on the sofa sideways and that was so much better for thinking. And just generally feeling better. However, I basically eventually slowly dismantled what the sofa...

To throw in fatiguability, there is a specific 'judder/three tugs' that eg my legs sometimes do when they are 'done' - it was particularly obvious when I once went to the gym and a personal trainer was stretching them out further into the session, and it freaked her out but I just calmly said...

have we gotten to the bottom of why this no PEG thing came in, and I mean really - was there some funding thing or was it sold on a waste of money in these types. Which could be about 'commissioning' (primarily commissioned for IF, not x, y, z which take more time or whatnot?) stuff I guess that...

The way things have been twisted to be set up removes all the faith in that person and voice over themselves no matter how many times they allowed themselves to be damaged by the lie of a compromise of ‘we’ll just try my way first and if you don’t improve we’ll support you in yours’ the support...

It’s bad enough. What do those facing all this but have no support and find those around them sort of have these it can’t be that bad try this for a year attitude not prepared for the responsibility of how huge a set back and deterioration that causes it’s terrifying having everyone around you...

I think that is the thing, that we don't really know when PEM starts. And @AliceLily has some very good posts regarding the rolling PEM and cumulative stuff that just puts the cherry on the cake, along with the 'type of activity' vs 'type of symptom/PEM/fatiguability'. The thing is I can talk...

Plus we’ve seen enough others in UK hospitals having DOLS etc put on them without that automatically coming with even tackling the feeding nevermind the environmental/PEM/sensory stuff. They’ve ended up trapped for long times often with people talking about mind techniques for pain or exposure...

And me/cfs is 1. plagued by ‘stigma’ , plain underserved dislike, and misinformation that hadn’t been corrected 2. suffers hugely from paternalism, particularly those severer even with other patients sometimes even when they can think fine and make decisions but ‘can’t put their hands up fir...

I think @rvallee s point is the most pertinent if there are no guarantees what someone will to do after you sign over your freedom to get your right of consent and the people you are giving it to can’t even be clear or straight on what they believe the illness is nevermind what else is going...

How can you tell if one is good or not? I was updating a clinic page the other day with some news I had spotted and the AI bit at the top of Google suggested a gastro might have been linked to it. I did the obvious basic search terms to check fir that connection and fir any obvious ‘doom’ (like...

I'm not sure whether sometimes it is just my being exhausted right now to think through what might be something more complex ie layered bits that is beign described here. Maybe I'm being thrown by the hot stove analogy which is conditioning of a form. Tho I get the concept of saying 'can't' in...

I read that a bit differently but wasn't on the forum when that happened so hesitated to comment - but I've also read comments saying he wanted his story to be told so. I've read the following for example: https://www.s4me.info/threads/bob-robert-courtney.1068/page-8#post-175922 Which feels to...

I like the word concept. It's something I know from science and business, then I've seen it used in the social sciences but not in a belief-specific sense. You have 'concept cars' for example. Just because it is communication of an idea doesn't make it about beliefs. And I think bps will try...

I think it is worth considering adding the specialism of rehab medicine into the mix. This seems to either come with or have unfortunately developed a blind spot regarding appreciation of robust methodology (and how that can still balance with context and observing individual reactions to it ie...

I wholly agree with the point that you are making being something worth considering. Sadly I think that the most important point to make in our whole saga is the issue of anyone who doesn't realise that their vocationally-focused training has not allowed them to focus on critiquing and thereby...

I find this an incredibly worrying situation, how this has ended up: It is 1. inappropriate that we've ended up with MEAction having to leave, and 2. A really indicative sign if we now have a group representing 'pwme' that includes BACME instead of MEAction that the other members of the group...

It has a lot of people discussing the correct use of statistics and being able to analyse these things etc.