I had a lot of colds and virus problems before the “big one” which I couldn’t recover from.
Then a few years on, a few years of remission which started to slide away until it was “chest infection/flu/virus” every few months, every two months, cutting back on work hours, working at home….
I too had a remission phase after a few years.
In my initial illness, I still worked full-time and socialised at weekends, would that be 50% less? Probably not, but I was constantly in pain, depressed and off sick, I also quit all outside activities like the gym and studying. I’d collapse after...
As a foggy-brained and not at all scientific person, I think the statement about PEM not being cumulative must be the the biggest glaring clanger she has stated (in public, on Facebook)
I’m not going to attempt to argue the minutia, I think this one thing should be taken forward and...
Sarah has ME so I’d like to know from her how the “treatment” has improved her ME. Seeing as she knows what the treatment is, and is both patient and expert. What was her outcome, can we expect similar?
I know it’s not AI but she manages to write in a style that’s a bit like AI. Perhaps she is again reading our messages to her family and they’re all having a good laugh.
This has been bothering me
Yes, we are aware of FUNCAP. It is a perfectly good assessment of the impact of activity in a limited number of activities. If you prefer that, then use that.
But we are talking about an NHS assessment where people will not have the choice to use FUNCAP, so “if you...
Quite. It is the “tail wagging the dog” the MEA gave funding to Tyson and two NHS employees, to write something which will produce an NHS outcome measurement about NHS service delivery.
The patient is an afterthought.
As far as I can tell, it is nigh on impossible to measure cumulative effects because they are totally individualised and vary all the time. Do you have any suggestions about how one could go about it?
well, there’s this app called “visible”…
“…certainly the activity means that one exceeds your PEM threshold they do, but it…”
Eh? I know what she is trying to say is wrong but she doesn’t even make sense saying it
I wouldn’t even reply to her, she won’t take it in
It’s just a load of hoo-har. But they won’t have it, they think is gold standard amazing brilliant super smashing.
I’m not even going to read it, it was a waste of my time the last few times, I could be stroking the cat instead, at least she appreciates the attention!
Cat tax for being a moaner
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