Search results

I think it is worth emphasising that it isn't special to either us or the condition so I think we are the 'round hole' and PROMS was a very weird peg trying to pretend it wasn't false beliefs hidden in forty thousand questions on a questionnaire. PROMS is maybe useful for very short-term...

I think she really only had the intention of 'managing that stakeholder'. And if not, then coming up with an excuse why not including them was acceptable (hence fake outburst) I think the thrust of what this project would be measuring was being planned out in 2013, maybe adjusted with some...

I have just seen that the link to the facebook post from ME Association is here: (1) ME Association - Patient Reported Outcome Measures (PROMs) in... | Facebook There is another issue here. Because the survey is sent out by email, this post is very old and so noone will be getting comments of...

Indeed. It is pretty close to the rehab after a knee op focus of moving through box-ticking can someone walk up stairs, walk down stairs, walk 200m without crutches, run Job done. Well done rehabber. Bye bye patient, all is fixed. And nothing to do with an energy-limiting condition where...

Very good comment - I hope that it does have an effect. I've come to the conclusion from this activity one that it is purely in the misnomer of 'rehab' paradigm - this one has particularly shown up how this measure will lead the targets/treatment/paradigm. A focus on measuring 'doing more...

Just to try and stand back given everything going on currently. Is it 130ish members in BACME? So maybe 130 staff members to re-educate / de-programme of their false beliefs, and then that number of staff to find who are capable of learning something useful to offer with the correct approach...

As it is about 'measuring delivery' and doesn't seem to care about 'how' you get things done, I assume it is to be used as a fake KPI to pretend they've 'increased people's function' by either coercing people to change their responses or coercing them to 'do more of these' necessitating that...

Because they've mixed up concepts they've missed what is a pretty common thing which is that for most people with ME/CFS they will not have choices in a lot of the tasks on their plates. ANd have few choices about how they do them (if work tasks) so others have to be adapted to fit them, but the...

There is a point to note about workload (of doing the questionnaire) and its validity in relation to these also. People use scales normally when they are 'shades of one thing'. For example satisfaction (focused on something pretty specific) or 'very much' to 'very little. On that basis they...

Yes indeed, as people get more experienced they learn to be more tenacious with their envelope because the world has been taught (explicitly by the very people who 'claimed to be there to help us') to give us no truck. And we still have needs of all kinds. Your food shopping goes from being able...

I don't fully get that - is it delayed too? I mean it takes years for most to pick up on PEM anyway even when it is a massive crash - simply because of the rolling PEM situation and thereby needing to have a period in time where you have more significant breaks in exertion/committments etc or...

If the ME Association secretly funded these people just as one final 'let's give them a go in good faith to get the proof they can't/won't change' then they've played a blinder. I just can't get over the threatening coercive behaviour pretty much warning anyone 'only the right feedback' being...

I think, apart from the questionnaire being far too long, the choice of responses ambiguous and various other problems, the main problem is it doesn't include anything related to PEM, symptoms and the cumulative effects of exertions. It seems clear from the options (and the 'PEM survey' not...

But none of them are under the GMC? I mean technically the clinics should be staffed by a non-psych clinician, but that's another conversation, and there is no sensible way if you had that these types of silly things should be being used. SO why the GMC? Are they trying to influence them and...

Oh Peter I hope that all goes to plan for you and that she has a wonderful wedding. :) And yes, Precisely. That's exactly what I mean by their hand-waive to the disability part (and the utter tenaciousness of people battling invidious choices and how they can achieve despite limitations making...

Yes indeed, I think they get an idea enough about how horrid the condition is from people just describing the impact of a few example activities and what it causes them. So maybe experienced patients providing advice on what is actually useful in a diary, but I don't think they need to be...

I know exactly how it will be used. Instead of looking at overall exertion, the thing that matters, you will have those whose entire focus at the moment is trying to prove their false beliefs aren't false will pick out individual answers to argue with the attendee over. In some dodgy attempt to...

As an example if some app like Visible suddenly announced it was selling pwme data to eg Sharpe, Chalder, Wessely or White everyone would be terrified. This is worse, it is getting people to fill in themselves selective stuff that nudges them to tick boxes described in ways that don't actually...

I'm worried about this because I'm coming at it from a professional perspective. In seeing how apparently under some dodgy excuse (I mean really this is also going to lead to a very, very bad and inappropriate service - which has clearly all been made up around BACME not wanting to have...

NOONE should be required to have that level of intrusion in order to access ‘medical care’ I’m sorry but we’ve been walked into an utter horror here where it feel a charity is stitching us Uk for our human rights to have been totally finally removed it’s like the worst horror film of a small...