Agree. People with ME/CFS need time to write to their MPs and MPs need time to get events in their diaries. Asking people a few days before an event is a complete waste of everyone’s time.
“The Annual General Meeting of the APPG will be held on
Wednesday 21st January — it's so important we get MPs at this meeting, as a minimum of eight members are required to allow the APPG to continue its important work.”
The event isn’t even on the main
APPG for ME’s website and it isn’t on Action for ME or the ME Association’s either. How can the APPG or charities expect patients let alone other MPs to take this seriously if they don’t?
Putting this on X is an insult more than a help given the attitudes of the platform holder. (Here’s a
not X link to the post)
Is it that slick administrative resource (and giving those positions appropriate power so that it's not 'cleaning up after everyone' but 'getting systems into line and slick') are just not afforded/appreciated/respected as a profession and one of the major required functions in itself in the way it is in the types of institutions I have seen.
And in those then it becomes those making it 'slick'/in charge's responsibility to be doing a good job of actively hearing the different stakeholders so understanding the needs and limitations and what does and doesn't work , being allowed to plan ahead and 'trouble-shoot' - and then yes it becomes everyone in the organisation's responsibility to understand that they do 'their little bit' to make sure the person at the end of the timeline isn't given an impossible task.
(we aren't all just 'incapable' but often have other things to offer and that is rarely put across as part of the equation even in those who represent us instead I find it foxing
they, those supposed to be representing the ill, focus on accentuating making us meet the things we shouldn't have to rather than making things accessible - which I find astounding given I spent years doing this for others just naturally so I see it as an active choice being made daily)
I mention this because I think there are often issues when you have governance that doesn't take the time to understand properly what is involved with jobs they themselves haven't done (and tend to underplay what's involved and it belittles them), and also they get confused that if they have to report where money goes that it is better not to have 'a line on the cost sheet for administrative management' even if it means everything is both worse and costs more. It is like the old days of when IT was seen as buying hardware or fixing it.
But no real organisation works like that because they know it causes wastage. And if you cheap out and aren't hiring someone who is both talented and humble to be focusing on the needs of all those it is serving, but in a very non-partisan way, because whilst sometimes 'more senior' might have their own needs they also tend to know they need that to work so making the task impossible for those they need to be part of it is illogical too (rather than when you end up with someone picking 'what they like to work with' over seeing the issue as 'what can these different stakeholders work with and fits the tasks we need to deal with best') as professionalism then you can end up with something quite different - albeit some luck out and get a lackey who runs around making the impossible happen, until they leave and the job description issue becomes clear.
So I guess I'm talking about this pointing to culture too (getting the importance of 'the organisation and what it is supposed to do' confused with who has invertedly been given/thinks they have the power/runs it) - but it is chicken and egg.
It goes back to me thinking about the trustees issue, as just one contributive element - did any of them ever work for big slick organisations (or just not small top-down businesses) in positions where they'd have realised or noticed the architecture keeping it ticking over?
