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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...

there is nothing at all to make their data set representative of the population ergo not externally valid. Particularly with such an accessibility issue of it being only those who are prepared to consent to all of that, and can wade through 98 questions, or those who can't but did them half...

I'm so astoundedly outraged by this from a professional point of view. NO research organisation should not be censuring people doing this - even for healthy people just based on lengths of questions there would be utter uproar: they are only getting away with this because it is a vulnerable...

Or at least means they should be emailing the info BUT absolutely must be doing so asking the question as to whether someone wants to not just withdraw consent but data on basis it was filled out without ticking any of that. SO it cannot hold. BUt any poor soul who was really ill and made...

This sounds so naive and missing understanding it is starting to be obscure? I think their own descriptions of the different levels are part of the problem here. There is a common level between 4 and 5 they have just skipped over. Most people will have all of these sensitivies and definitely be...

doubt it.. that's what psychometric does. Cross-compares consistency of answers PLus I guess some of these activities (the ones doubled up) can be done at different levels of demandingness. like crazy golf or having a putting machine in your living room vs 18holes carrying a bag around...

Thanks for confirming, so it is mainly via the email from the ME Association? I don't fully understand the list that has been added regarding consent vs this on the recruitment side of things. I also don't know how they think they have something representative to use, and how they can claim...

Ideally one with time spent horizontal and maybe whatever measures might indicate it hasn’t been great for health to account for all the variations (inc someone still having to do all that but the gait being what shows how unwell they were doing it or being collapsed where they might have been...

Come to think of it.. can anyone confirm how she has ensured that those filling in the survey actually have the diagnosis they claim ie it couldn’t just be accessed by entry it’s making up stuff to skew the data by saying they have ME then ticking they did x y or z?

There is nothing at all to do with a university that would require this. I can’t imagine her physiotherapists regulator asking to look at it either GDPR and anything else would be requiring it was stored safely anything checking fir fraud would be making sure it came from a real source and...

just thought on this one again. no it isn’t university anything they seem to be using the data in some sort of psychometric way so not necessarily looking at individuals patterns might be lowest common denominator which would be an issue. I guess that’s why they don’t want to allow the odd...

And this sadistic refusing people in pain pain relief when it’s obvious claiming a ‘belief in hysteria because they are women’ well surely that should be prosecutable as something like assault (and detention where they are detained for long times in such pain) under false pretences or...

The bit about wanting to be in a wheelchair and lines like that would have got someone sacked and unlikely to be employed anywhere else or arrested for hate speech until these people started pretending their manifestos were ‘research’ to ‘cover’ for it. but it’s the same. Shouldn’t doctors or...

I don’t understand how their list can be legal or upheld given point one can easily be contradicted by them not answering your questions satisfactorily at all but by that point they say they’ve got your data snd you’ve got to consent to all of that in order to even see the survey or ask a...

Also when does someone consent - if it is saving as it goes then someone perhaps can’t even withdraw if they start finding the questions more and more worrying ? and yes this is the clsssic paternalist fir severe thing of someone saying ‘it’s ok cos they can do it in bits’ well NO they...

The first three seem pretty unusual too what’s that all about? And am I wrong suggesting the norm for these in most research is different to this?

Here it is (my bolding on the 'drug controls can join in the exercise programme' bit): and also