Annual reviews for ME/CFS

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?)


These things would be useful for a surgery to discuss as a strategy when someone is in work and struggling- so they don’t feel there is no evidence just because it’s silly coming in each time, but also because it flags discussions with employer on adjustments or ‘something else going on’ if that goes up?

hence my saying that’s like the ‘when you have an asthma attack’ plan. Which I imagine comes with an ‘if you are finding you use your blue inhaler a lot more regularly / are having quality of life affected .. to x extent then note it down (so we keep eye on it) and come in if it persists for y months. Or if a bad then come in straight away. Ie ‘a plan’

so people who are having to sign themselves off work anyway on those occasions feel ‘allowed’ to come in and discuss with gp ‘when it increases to this extent’ etc

I agree that it makes no sense outside of the helpful context and shouldn’t be like a ‘hiw many times du you use your blue inhaler’ standard question fir everyone.


And not necessary. If just ‘moments of truth’ were logged and gp ‘dud something about it’ ie wrote asking for adjustments then that would be ONE half decent measure eg fir the harm from some bad ideas like cfs-CBT or GET? Or from eg increased hours or further car parks at work etc?

I completely get that we need to come up with a good framework to describe the line between these things. And in fact as a legislative thing so that measures can’t be twisted to become big brother and not measuring health nonsense every time we suggested something that ‘in context’ would be noted very differently. And certainly not ‘reported to all the agencies’ in the way eg Tyson lists them - as if clinic’s should just measure it all and send it off to everyone.

TGATS an important piece of privacy - or whatever it comes under- legislation I think we all need to discuss here actually. Because I agree I ‘feel the Trojan horses’ too

 

I agree that would be absolutely ideal, but I don't think it's realistic until we have trained ME nurses. For what it's worth, I've been having asthma checks for longer than I can remember—and with a lot of different nurses—and I've never had the 'what to do in an emergency' talk. It shows that some practices are more proactive, even with common conditions they're experienced in managing. The proactiveness in ME will probably remain non-existent until we have a specialism in it.

Maybe we need two lists: what could be provided now, and what's absent but much needed.

 

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 different nurses used to say different things on that which contradicted, or were different ‘ways’ but it was always silly bringing it in them simulating - which isn’t easy to do given you are imaging ‘if’ you were taking it) as focus. Oh and both of course focus on how much you need your blue inhaker and how many attacks etc in general

so it’s absolutely relevant territory to the PROMS stuff as to what gives the impression of review or monitoring vs might be questions that get to the heart of things a bit more. But what the purpose or use of those are going to be seems to change slightly over the months since it first came out.