Yes. I was thinking there might be n issue of trying to push a whole new definition of what the illness is through this s I’ve watched the proms come through and this is no different . But it might be their false beliefs / lack of understanding of it plus unwillingness to hear that new definition/get an understanding
I agree their claimed rationale/reason for this isn’t met because if it was to allow clinics to help pwme it would be questions like at the end of your post. Insight and doing exactly this kind of thing was what I did for years and that’s exactly what you do: ask direct qualitative questions that definitely answer the research question or need being claimed to be met , not try and proxy it with loads of quantitative ones you haven’t informed by very very significant exploratory research - I note that stage was skipped and not done with experienced patients, and I don’t think they want to.
But that is methods to the extent you’d be told not to apply gif the job if you couldn’t and didn’t answer that when asked informally ‘how would you approach x’ by anyone who might be your boss or leader in charge of project. So I’m confused by it not happening . The reason it’s basic method is to avoid leasing questionnaires and questions that don’t answer the research question or can’t provide the nuance needed to indicate what to change to/a way fireward.
I sometimes did surveys where every question past a point was an open box - that’s what you need if it’s a ‘what would improve it’ situation
I have major concerns if this is claiming to measure PEM then they darn well have to get it correct and they haven’t. It’s going to provoke less understanding even in patients of themselves of this not more and is creating the usual incredibly violating ‘can’t communicate, can’t be heard unless you’ll admit to our delusion you have a delusion’ coercion that has been used by those running the area in the past. And that is so deeply violating and sparklingly harmful and de existing that it cannot continue and be allowed to be pushed through these veiled means. MEA need to get smart to the ‘in the name of’ claims of ‘doing it to be easier to understand’ without it being PROPERLY market tested and proven by independents (not BACME marking their own homework by designing their own survey to us then only those who fill it in can count and only the questions they out and answer options can) overseeing an externally valid approach ie with qualified and representative respondents doing open critique - not skewing replies as this has.
but we know the author has an unwillingness and ‘boundaries’ to the level of disagreement with anything allowed which is coercion (dressed up in terms like ‘boundary’ is something inappropriate being pretended to be ‘ok’)
I didn’t hand over for these two to get a second stab at controlling who I am and every little innate part of me and my life. And MEA haven’t guarded me and my rights and have just handed that over to those who did wrong and won’t even acknowledge harm was caused nevermind will change to a focus on then learning doing better and focusing on avoiding harm. Just an entitled pair convinced that if they say it’s slightly different what they are imposing to last time then not caring about and silencing the harms done is ok. It has never been ok.
now I’ll spend the next part of my life with the who I am and what I’m allowed as rights and what I have to swallow to say I am to have any controlled by this pair ?
this isn’t an illness survey. MEA should have been saying they were campaigning against the behavioural approach- but this is all that is and is about trapping us all into a dystopia where we have to pretend and salute to pretending we have something we don’t to get crumbs… again.
