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

Thanks Daisybell, that makes much more sense. And I agree it's not particularly good for ME since it doesn't take into account fluctuating symptoms, and the cumulative effect of trying to do several things in succession, and PEM. But it's better than SF36 physical function for very severely affected perhaps.
 
Trish said:
Thanks for your comments, @ProudActivist.

In that sense, the last sentence:

could be interpreted as a benign desire to find out properly what can be done to prevent patients' ME reaching the severe and very severe stages. (like abandoning CBT/GET and giving patients adequate support).

If that's what they mean, then it's fine, but it seems more likely that they are using the term in the BPS way we know and hate that is really a focus away from biological to psychological factors both in perpetuating the illness and in treatment strategies.
Click to expand...

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.
 
Daisybell said:
@Trish I think they must be using the modernized Barthel - where the scoring is changed to 0-20. So unable to do something scores 0, needing assistance scores 1, and independence scores 2. I’m fairly certain this was designed for stroke, so I don’t personally think it’s a good tool for ME. It is a pretty crude measure even for stroke....
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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!
 
Trish said:
:)
Took me ages to remember ETA meant 'edit to add'. I kept having to ask.
I tend to just say 'Edit: .....'
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So you probably struggle with my

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

:D:hug:

(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 :banghead:)
 
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