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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.

Nope I think the two important bits of what she did say to focus on are: So some of us might want to be looking at whether we can get radical rest in. The sad truth is that whilst the NIH at least did provide the raw data I'm not sure the same standards apply here - which given the...

Yeah, someone might want to point her to the thread on EFfRT, or maybe that's why

It is worse. Because the norm with these sorts of things is that you are coming up with 10 measures, and everyone who needs to be around a table then scrutinises these as measures and their weightings and methods - I've been part of how these things are done for other things. There is a reason...

To be fair, I'm not sure she gets the statistical tests she is citing - so I wouldn't assume that tone on that part is due to her assuming we know less than she does but that she perhaps is being passed on the info etc because there is a stats expert in her team/it's not her specific role.

Really? Doesn't sound the type of healthcare anyone would want for any other illness? She's hardly forwarded the argument she has in mind when she says this well - how can these be used to help someone's health? And no, really no proper scientific medicine would be using any of these types...

I'm confused on what they are claiming to achieve. And also get a sense there slyly might be under it an attempt to re-jig the definition of what ME/CFS is according to CDC and new Nice guidelines ie what we should be moving towards Really what this needed if done properly first and foremost...

If I have that correct then I don't know how to square it (or discuss it on here given the sparse info) with the ambiguous terminology and employment of the term 'mental health' for things like FIDI, Munchausen's, for declaring someone 'functional' vs 'sectioning' (and then they can treat them...

I can't remember which article or interview etc it was from but I remember Sarah makiing the point that one thing she was particularly referring to when she talked of Palliative care was that Maeve didn't have anyone to talk to about her impending death - that apparently having someone who...