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I’m also concerned that despite asking questions this detail wasn’t sufficiently explained so input could be focused appropriately vs what they planned to do being a ‘best fit’ even within that remit. which is why I’ve been confused and asked elsewhere whether there is some standard protocol...

Indeed that information is pertinent because whether it was justified to pay for it seems in my mind to rely on the ‘control gates’ they have to insist of changes in methodology and oversee stakeholder input being heard properly (not just preferred voices and a nod to consultation whilst doing...

I agree with all of this.

Yes there are lots of papers re:whether it is more accurate to ‘measure the gap directly’ bs calculate the gap by measuring two different time points across lots of literatures particularly service management for example. and of course it sounds like medicine would agree from a method point of...

It’s a very badly worded question. Basic market research how to word a questionnaire says you shouldn’t have multiple loading of questions into each other and you need to make clearer what is being asked. my gut when I was thinking how you’d make these assessments better was to ask people for...

Only an app could inform that - because the reason it’s so hard is we are interpreting patterns (have we had more bad days vs threshold/activity challenges, were these days worse than they would have been the month before) it’s often only three months in you can be sure ‘it’s worse’ due to...

Which is weird because they are focusing more on that - which is relevant for an app which is useful individually because it tells you when things have changed more forensically- but this is instead using using clues to help people avoid PEMseeks to be computing overall scores in a condition...

Yes it was deliberately disingenously worded, classic straw-man. Although filling out questionnaires can also harm people too. It is for her to prove that has not been the case when it is raised as an ongoing concern regarding safety, not the other way around, much as she might 'switch hats'...

It’s appalling isn’t it to imagine these people deliver thee assertions AT people and their ideas have created forced imposition of awful things based on their madness ie it sounds deluded, is deluded and silly but boy is the impact on those targeted not left at small by these people sadly

That one utterly makes sense guven I assume when first diagnosed reading ingredients lists for those terms is important. And given they are small print and lots of items often in said list you’d be training yourself to actively spot those words? there is a reason they put allergens in bold now...

Yep it’s one thing if it were a student paying other students but the amount of effort for severe MS patients to have been dragged in for this makes me think there is a major ethical issue that isn’t unique to ME and needs us to get on board other charities to form a charter of acceptability and...

I think that this is a relevant point to look into - albeit trying to make sure we aren't doing work for the sake of it - what indeed the other PROMS are and whether they are context-bound, in association with other forms of measurement (ie if prognosis and progression is measured separately and...

Thanks @JellyBabyKid I also want to note that these are also methodological points I make from a professional basis, I'm sure you understood this but it is worth this point of clarification for the context of the thread. ie as someone looking to be a sound professional who would use said...

Particularly @Hutan but also any others who might be able to help here as I've had a hectic time of it recently but need to get back up to speed on this? OK so early in this thread I noted the work that had been done on Covid and the Yorkshire rehab scale etc and that one of those involved in...

And when I mention 'professional/basic professionalism' in this here is the code of conduct page for the Market Research Society: Code of Conduct | Market Research Society (mrs.org.uk) Whether someone is a member or not it provides basic standards for a reason, from which other research isn't...

INteresting. Is this approach to stratification/forming clusters something that might be relevant for ME/CFS? given they are talking about criteria within such groups (fatigue and dryness vs symptom clusters) that perhaps aren't biomarker-requiring but in this (and I haven't checked the...

now that is just pushing propaganda isn't it when you see it in such bullet-points of tropes and in the context of so many years after it has been proven things like WOrkwell and the Nice guideline. I'm sorry but I think it is time that dangerous disability bigotry needs to stop being allowed...

This is an interesting point, particularly when combined with @Kitty 's experiences because here is the solution perhaps 'cut out the middle-man' and move any funding that might be associated with it to a group who are producing the research-led materials to eg the more 'general' services and...

agreed

it's weird how they never talk about or research calming the body to help the mind. How someone having their body hurt isn't going to do the 'mind' much good, and maybe if you fix the broken leg both will be much better but if you gaslight them into therapy focusing on imagining their leg isn't...