Search results

Indeed - and as the King's response suggested even 'covering themselves' by saying there are 'not for ME/CFS' - well what are they being funded by then and how is that pot of money working. Because I suspect historically they were set up under that 'guise' but expanded to cover 'fatigue' ... why...

I agree. There are some good ones that are medically-based, but perhaps these are identifiable in various ways and need work on to ensure that succession-planning (where often these services have historically changed significantly) improves rather than erodes good aspects. I love an analogy and...

I think that an understanding of this is probably v useful for making smart proposals. I do think that things can move slowly and contracts don't tend to be longer than 3yrs - which might be the amount of time to persuade areas of alternatives. So I think that time to contract is a good way to...

This has now been picked up on ME Association - with a facebook post on it, where COlin Barton has commented if you scroll down it is currently at the bottom of the comments. I don't know whether anyone has been to Hayward's Heath as that post mentions that service not taking in severe ME as...

Is Dr Findley the one who almost joined the ME Association a while back? Was he with this group at that time?

Yes that is a good point that even if he does believe in it helping some that is a world away from dismissing all of these issues and the observable pathways of those it doesn't for all of those reasons. And that is unacceptable. And to layer on the gaslighting and other aspects is...

Indeed. I'd be intrigued to know what is going on with him, as it is one thing many living with hope and deluding themselves for a certain amount of time that they are going to get themselves better by forcing their way through the illness - I'm unaware of anyone who has succeeded longer term...

It shouldn't be anywhere near that directorate. And if it is being forced there that is the very centre of the issue

are we allowed to 'hard copy' the whole thing for posterity or archive/cache this somehow? I think it is an important 'piece of history'. Remembering the sudden change to claims of 'it was never fixed increments' and 'was just rehab' rebrand of GET around the time of the guidelines I'm conscious...

The rest of the post has moved but it had more detail of what it related to as a comment. I meant that 'false belief CBT' or in fact CBT that has any biopsychosocial or tendency to 'stick' personality suggestions on people isn't far from the false memory implanting issue that constituted a...

I meant a proper investigation into whether this type of CBT should ever have been offered and is harmful - doubly bad that the cause is biological. The rest of it notes about false memory scandal - which was huge at the time for the psych world, because it talked of people having false memories...

That's awful I'm so sorry you went through this and second the comments from @Trish There is a very important point you've made in here - regarding the repetitious use of certain surveys and how these in themselves should be being assessed (by any sensible system that actually assessed the...

Spot on

It is bigotry. Plain old. And really nasty level stuff too, incorporating misogyny and cliches and disability troping (not ablism, worse than that). The sort of trope someone really unpleasant would do in a close relationship to get someone to blame themselves for harm that happened to them. Not...

First and foremost it is about someone who must have engaged in an entirely now banned therapy. Which says a lot about the quality of this place if they think CBT is CBT and can't spot the difference. Which leads me onto the second issue - what situation was this individual in when they wrote...

I'm interested in this but don't have the brainpower currently to do the 'put it together thoughts' it probably deserves. My gut is that in the past sometimes my cognitive symptoms have seemed like this (and I have enough CO detectors around my home to prove this, particularly in the past). I'm...

Many have muscle wastage, what is the term for 'muscle gone but not necessarily due to lack of use' or does it all have that cause and is deconditioning? I'm sure I got it when I was still having to walk about including significant vs the condition regular ones for things like commutes (which...

No you are not alone. The way the situation has been over the last few decades has made me unsafe (not 'feel' unsafe, but actually unsafe) and have to wake up and think each day how doI protect myself e.g. freedom and all things that come with the issues the system and myths caused then allowed...

I don't just suspect. I'd want evidence it was anything other than a choice because of how website updating works (sign-off processes - which can by the way be FOI'd, to see who chose to include it) Case studies are chosen, edited, briefed to fit a specific purpose. And to convey information...

That 'case study' is outrageous, these should always relate, rather than pull against the main message so their choice to include this is suspicious. It is clearly very old with regards treatment or diagnoses so it just a red herring: "There are times I thought I was going mad. The term...