UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

MEMarge said:
Why can we not begiven more notice to contact our MPs!
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We say about notice and needs all over the place even to those supposedly only there to represent ‘all me/cfs’ and yet I can see the lack of intention to change what they do to those in speaking to even as I say it.

Maybe on this one there are ‘reasons’ but if there are then there are also explanations that mean there is a timeline where it maybe can be controlled to naxkmise and give ‘more time’ . Or at least even if exact dates and agenda are confirmed last minute there might be a skeleton intention (ie if 4 per year so MPs expect something might crop up on ‘that’ in ‘around Jan’ ) . But maybe I’m naive how it works.

But I think I’m right to assume based on thousands of action-observation tests that for most things it’s some weird human thing of choosing not to hear and not to take seriously
 
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)
 
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hotblack said:
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)
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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?
 
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Ai may provide some explanation as to the short notice for the ME APPG meetings which we get sometimes - i found Gemini AI gave some interesting suggestions, as well as agreeing 48 hours was generally too short notice. But do not have capacity to investigate the sources currently.
 
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hotblack said:
I’d be very careful about reading too much into this from an LLM generated conversation which may not be accurate. If you have primary sources which support this can I suggest posting them @Cinders66 ? Gemini often gives source links and the UK Parliament and House of Commons Libraries are great resources for information on rules and procedures.
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We have no information given. I just thought this covered a few bases to give some explanation of the otherwise puzzling.
 
Cinders66 said:
We have no information given. I just thought this covered a few bases to give some explanation of the otherwise puzzling.
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Understood, and I’m sure we all appreciate the effort and intent. I’m just asking for you to provide the sources for the claims made, especially about specific rules and procedures mentioned. I use Gemini myself and if there are sources it will have provided links. Or you can search on the sites I gave which document parliamentary rules. If not we cannot trust the explanations. There could be many.
 
hotblack said:
Understood, and I’m sure we all appreciate the effort and intent. I’m just asking for you to provide the sources for the claims made, especially about specific rules and procedures mentioned. I use Gemini myself and if there are sources it will have provided links. Or you can search on the sites I gave which document parliamentary rules. If not we cannot trust the explanations. There could be many.
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There was not one answer given but several suggestions. However, I have deleted the screenshots and changed the post to AI gave some interesting suggestions as to why the ME community can get a seemingly pointless 48 hours notice about APPG AGMs but i do not have capacity to investigate the sources currently.
 
Cinders66 said:
Jo Platt's statement re. Long Covid app.

My main concern in having an ex long COVID sufferer run both, is having ME/CFS and long COVID needs & struggles overly blended, when LC is “new” early stage, far better supported preventing the decades of suffering and disability that is the m.e scandal. They may, at onset, be the same or similar, but the cohorts differ. Blending in advocacy sometimes erases this; perhaps the fact that they're keeping separate is a reassurance.
The ME struggle has been longer & more deadly & the wounds deeper & more irreparable. Separately, LC advocacy's angle is on prevention, early management & back to work support & ME advocacy must emphasise m.e scandal & harm situation, justice, severe ME care, reparative research effort, and exertional damage research. We are not just starting and seeking “belief” support or early intervention to allow a natural high chance of recovery which might be how some LC is more framed, and we know this is how the NHS wants to just proceed with “management”, as if harm hasn’t happened. The advocacy and urgency for m.e must reflect this.
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Given how things have gone, I'm pleased Tessa Munt has taken over chairing the APPG. Running 2 groups in parallel, in my opinion as above, couldn't work & having an outspoken Liberal Democrat as chair, when Labour MPs & the APPG seem reluctant to challenge the Labour gvt, can imo only be an improvement.

From the MEA post, Dr Charles Shepherd has pretty much given up on it and doesn’t attend anymore, despite his probably being the only Dr, therefore of a particular expertise. The MEA sent one of their other older male trustees - why are they still all older and male?

After 30 years of getting nowhere, I’d lose the will but I’d also change course. Instead, there’s a formal expression of enthusiasm for each APPG regrouping, as if this time, collecting MPs to talk & writing a report will, without applying other pressure or working with the media/celebs and creating a momentum for their words to work alongside, for some reason, produce fruit.

I believe time has shown that reports & surveys make little difference, in a hostile climate, *without wider actions* to create publicity, make a fuss, make sidelining m.e uncomfortable/untenable, and drive things forward. I’m not sure why Action for ME & Dr Shepherd especially, who’s now sat through 7 years of creating 2 sinking gvt reports & also several APPG reports & charity surveys, don’t get this, apart from the obvious (unfortunate) natural conservatism of the charity leads.

Arguably, the DHSC delivery plan's primary use is now to be a bat to keep us in place with. The main thing we have needed, in addition to prevention of unnecessary decline through bad care for future generations, is research, treatments and urgency, and until there's funding and a strategy in place to drive this at pace, we should be making the neglect embarrassing and uncomfortable, as they did in Germany. Lives are being wasted & lost, the MEA calls it a “crisis” & Action for ME have long-used terminology of “injustice”, the organised response should be more than periodic statements/ questions in parliament.
 
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Cinders66 said:
Given how things have gone, I'm pleased Tessa Munt has taken over chairing the APPG. Running 2 groups in parallel, in my opinion as above, couldn't work & having an outspoken Liberal Democrat as chair, when Labour MPs & the APPG seem reluctant to challenge the Labour gvt, can imo only be an improvement.

From the MEA post, Dr Charles Shepherd has pretty much given up on it and doesn’t attend anymore, despite his probably being the only Dr, therefore of a particular expertise. The MEA sent one of their other older male trustees - why are they still all older and male?

After 30 years of getting nowhere, I’d lose the will but I’d also change course. Instead, there’s a formal expression of enthusiasm for each APPG regrouping, as if this time, collecting MPs to talk & writing a report will, without applying other pressure or working with the media/celebs and creating a momentum for their words to work alongside, for some reason, produce fruit.

I believe time has shown that reports & surveys make little difference, in a hostile climate, *without wider actions* to create publicity, make a fuss, make sidelining m.e uncomfortable/untenable, and drive things forward. I’m not sure why Action for ME & Dr Shepherd especially, who’s now sat through 7 years of creating 2 sinking gvt reports & also several APPG reports & charity surveys, don’t get this, apart from the obvious (unfortunate) natural conservatism of the charity leads.

Arguably, the DHSC delivery plan's primary use is now to be a bat to keep us in place with. The main thing we have needed, in addition to prevention of unnecessary decline through bad care for future generations, is research, treatments and urgency, and until there's funding and a strategy in place to drive this at pace, we should be making the neglect embarrassing and uncomfortable, as they did in Germany. Lives are being wasted & lost, the MEA calls it a “crisis” & Action for ME have long-used terminology of “injustice”, the organised response should be more than periodic statements/ questions in parliament.
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THIS

Thank you @Cinders66

.
 
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