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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...

AS IF their email claiming ‘used fir other chronic illnesses’ isn’t a lie here that’s a major ethics breach. There is no way people with MS or cancer are being asked this in clinics and AS IF a clinic looking at ‘delivery of’ outsourced hip replacements is asking this it’s an utter utter...

And yes if they aren’t providing either the same correct terms for why people can’t or the extent of adaptation and having to live with a half shower etc and expecting their ‘pick one day’ experiment instead of describe a day within PEM and talking about consent levels of handing over data to...

Me too but the more I think about how dangerous this is… It is using a distorting framing which will distort what someone’s disability and abilities across days weeks etc look like I think it’s misleading in concerning ways too. Most days I can’t shower. As you say eventually you have to do...

:thumbup: Agree, there is a difference between getting people qualified to and interested in speaking to the 'overall' vs just getting a few people in to say limited feedback on something overall designed to go a certain way. To what extent was that group, their qualification to understand...

Every good research should know that you begin with exploratory focus groups - or in this case adapted so they could have taken in the first-hand information of those too ill to perhaps do that format - in order to inform that type of survey and if it was going to work. So I don't think there...

they don't even seem to have noticed the possibility of increased activities and duties related to actually being ill. Like ringing for prescriptions or medical appointments, sorting and getting results of tests, follow-up and booking new appointments and scheduling how on earth to get somewhere...

using an incomplete list masquerading as a choice of them using a list to replace asking people directly what % of what normal people have energy and choice-wise in a day. Yes indeed. Being able to bear in mind whether these are questions people will be qualified to answer. ie could even...

what on earth is it that they think this illness actually is?

Agree, and I thought that most indeed have variations on this. I'd go as far as it seeming 'contrived' to the idea that only exercise 'counts' as exertion up until level 5 where they've melded bedbound into only those who are very severe. convenient if you are a bit one-dimensional to the...