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Agree. And the irony to bear in mind is that for me writing an email or having to answer a direct question I haven’t yet pondered is huge as a task - that needs to be borne in mind if using the survey in this manner there probably are ways to reduce load as @Trish nited with getting rid of...

I think this one is one of the key points, the invented 'metric' in itself. WHich of course was then combined with the hand-grip test as if it wasn't the invented one but the validated one.

That one of applicability of subject sample is interesting as an old-chestnut we've seen highlighted as an issue eg in the Nice analyses for the 2021 guideline of therapist-delivered. It is a really relevant issue for ME/CFS to get sorted. It does feel like it needs rules to be considered and...

Hadn't spotted that particular one, but apalling if that is the case surely? As things were so knife-edge even with all of these coincidences added in

I think the following phrase from her quote needs to be probed too: "In my experience, disordered eating and restrictive food choice is not uncommon, especially in those with ME/CFS who are severely affected." She must be aware of the sample that she would have seen meaning that she should...

It's not something that many of us want to bring up for a multitude of reasons but it is important, particularly if the advice is coming from one source only. I also don't know whether Luscombe did the section on enteral feeding, or if that was by a physician. I'm posting today because MEA...

Anyway, I mention this not to whinge but because there is a lot that I am bartering in pros and cons when you think about how we start to measure stuff. And the complexities involved with each. Sorry that this isn't terribly organised yet as thoughts and I hope the gist comes through by some...

I think your second to last line is important. Over decades there have been very few spaces in time where I have had any control over either committments or exertion caused by others. I live from need to need really. And barter tasks that others would deem as essential with each other. Like...

The page it links to is: Marie Curie Campaigns and it include: Both a heads-up in case anyone wants to sign. But also I think that this is sufficiently clear, with a defined ask as an example for ME/CFS campaigns (although I think we might need to be more specific in detail as to what eg...

TW: this is about end of life care as a campaign. Just seen the following ad from Marie Curie on facebook: (1) Marie Curie UK - End of life care is stretched to its limit. We... | Facebook It's 'action point' is to sign a petition. Text is: "End of life care is stretched to its limit. We...

As if drilling people to think they should avoid it and be embarrassed by it actually helps reduce it rather than adding psychological harm to the experience too all very strange

yes you’ve reminded me how different it is to the last gp surgery. - I might be selling them slightly short but they seemed more focused on ‘numbers’ and it was more blow into the meter thing and then them tell you vs previous year and then show you how you take the inhaler (and sometimes...

“Do it on you own time please!” ?

Well I think these would be examples along the lines of ‘important five things’ ie no point asking severe about socialising and holidays away and sports but shower sbd teeth is insightful vice versa someone mild might find being asked about teeth starting ‘too low’ (though maybe not in PEM?)...

It’s terrible if so. I’ve found the following and don’t know whether it’s this and the rehab issue or not - quite insightful to be on outside looking in for another disease and not knowing if they are getting bps-ed (puts me in shoes of how some of the stuff about me/cfs might be read by those...

No I think even when I was more well then I remember I used to say that I had a few days a year where I woke up and felt what I sssumed normal people felt when they woke in the morning (never like a ‘lark’ does but just not like a ‘owl’ and like I was supposed to /ready to wake when I actually...

Of course that’s true in theory. But I was told that and yet those around me were left to have their own bigoted ideas and reach for the BPS stuff. and the vulnerability of the illness (can’t just interview for something else, can’t move house easily, can’t do commutes) means being managed out...

Indeed and we have it on another level when you have both physical and cognitive energy thresholds and have to calculate how to do what needs to be done that day when you can only do the stairs twice, sit up for x minutes and can’t compensate for it with hours on the phone or computer. you...

I seem to remember from looking at the sheets of raw data that it is your interpretation ie probability outcome. whereas I think number of clicks was what I used to see if people achieved the hard task It’s a while back now so feel cagey in case I mislead but do remember having similar...

I agree, when you roll in the lack of calibrating for disability (which is in Treadway's instructions, despite his reply), and the news articles and discussion noting that participants who had ME and not healthy volunteers were warned that they should be thinking about how these decisions affect...