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sort of brings things alive in a number of ways realising this. Or a lot of questions that maybe if more clinics are doing similar things is a generic discussion for elsewhere. 1. the funding difference between the conditions / why is it that these clinics are wanting to do this and move into...

I just found this on MEAction from 2019: Appendix-5-Your-experience-of-ME-services-report-by-MEAction-UK.pdf which has collected feedback about all/any clinics in some sort of survey so worth a look through and can use cntrl+f to search by clinic I guess I noted one interesting nugget in a...

Just spotted this, which is pediatric CFS from 2019 but I couldn't believe any presentation was claiming recovery stats of 60% recover in 6months and 85% in one year (a clinical psych). It is a presentation from the Bath clinic (scroll to end to see links to Crawley etc and materials from Bath...

As a wild card, just to ask the question: WOuld changing to 'Chronic Fatiguability Syndrome' - if done with enough of a campaign about it - be a short term solution to solving one of the major issues And would there be some arguing that was somehow inaccurate? Because I didn't realise until...

I thought it was technically much better. However, I also sadly am close enough to seeing the dark side of human beings that the 'exertion intolerance' part struck me as something that would just be twisted and taken the mickey out of Like BACME (and other horrid idiots) trying to twist Noise...

writing a short text. one which you wouldn't habitually do a gazillion times and be able to 'mimic' the norm for, but with enough you'd have to have that mental power to stand back and summarise the overall message and tone you want to convey. But of course it relates to direct complex questions...

Time just passes faster for me when exhausted. Hence I have a screwed sense of time without directly checking the time, because ...I assume... everything slows down and of course my brain is also slowed along with my ability to do tasks, or is better if it is a good day. It is far more than...

does anyone else habitually shoulder-barge door frames or (particularly corners of) walls when more tired (I know but I need that word to describe 'worse on my scale')?

A cynic (and the ME Association if they were being on the ball) would be wondering whether this is going to be used to justify funding for treatments that have been banned (anything based on the rehabbers delusion that we have false beliefs - just wish they'd added the line that in the thesaurus...

It always should have been someone like @PhysiosforME or Workwell etc who understood the condition overseeing something like this whether they did it themselves or formed a team who could. Never made sense to give the people who didn't want to change the ultimate here is a blank piece of paper...

I hope it is OK for me to put a direct link to this facebook post here: (1) ME Association - Patient Reported Outcome Measures (PROMs) in... | Facebook In case anyone wants to like comments or add their own. Does anyone know whether, however, it would be better to have a new post, or if...

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...