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Love it! I wish GPs could hear themselves sometimes. I’d also like them to show their sources for this “advice”.

Bit of a political nightmare isn’t it, who wants to publicly call out the ME A and NHS?

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?

So what if it is a new one? Such a childish retort! Her writing style is very much “a style”.

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.

If we fill out all these NHS questionnaires will they do us a care plan? Or still nah?

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.

What treatment is seeing planned, please ask!

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”…

I just find her writing style very passive-aggressive.

Quite right, you make a better point than I did!

“…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

Rehabilitation and pacing (up) Of course there is treatment which produces positive outcomes, otherwise why is the NHS running all these clinics?

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

My opinion - the concept is to build a body of data on pwME primarily to measure NHS outcomes on NHS fatigue services. That’s the starting point. Working back from that is a fudge of rehabby stuff for patients to complete. Whether any of this is helpful, useful or needed by pwME is less than an...

Whole concept is wrong, we’d be shifting the deckchairs on the Titanic, polishing a poop, tinkering around the edges and other similes for “the whole thing is garbage so any difference you make will be pointless” my opinion only.

Haven’t read through properly, I see Sarah is still a stranger to brevity. If you need me I’ll be in front of a mirror repeating “FUNCAP” until this is all over.

PIP