Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

Trish I like your charitable interpretation above! I don’t think that’s what they do mean though.

I think they may well have a “benign desire” to help us, but they are not “looking properly” or engaging with the politics and history. It’s such a waste of time and resources when they mean well, but don’t get properly involved or step out of the bubble.

I haven’t been able to look at that scale of disability yet, will be back.

 

I had a look through and scored as you described (0-2) and seem to score 14! I am far from independent. Very crude measure and not capturing any subtlety caused by symptoms or taking undue exertion into account.

Yes I bath on my own (not nearly often enough) and go to the toilet on my own and get dressed (well, in a basic sense and not without issues) but if that’s all you manage then is that independence? Very basic.

 

Also the food category is strange.
Needs food chopping to no problem with feeding is a leap. Are they assuming all people with stroke are men with wives who cook for them?!

I suspect this kind of thing is what the DWP base their criteria on. Has the same feel of a blunt assessment tool.

Should I put ETA on the second paragraph which I added with an edit? Is it Edited To Add? I am still getting the hang of this forum!

 

So you probably struggle with my

ETAA - edited to add again
ETAYA - edited to add yet again
ETAEMS - edited to add even more stuff



(unfortunately, given how disorganised I am these days, it's either that or the forum becomes a place where 98% of the posts are by me )

 

Ha, thanks for the handy guidance