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

Comment posted by Dr Charles Shepherd on ME Association Facebook post about the C4 News report

“Very good media coverage of what happened to Merryn. Thank you Channel 4. I will be meeting Carol Monaghan MP tomorrow at the APPG meeting where severe ME/CFS and delays with completion of the DHSC Delivery Plan will be discussed. Dr CS MEA”
 
NelliePledge said:
Comment posted by Dr Charles Shepherd on ME Association Facebook post about the C4 News report

“Very good media coverage of what happened to Merryn. Thank you Channel 4. I will be meeting Carol Monaghan MP tomorrow at the APPG meeting where severe ME/CFS and delays with completion of the DHSC Delivery Plan will be discussed. Dr CS MEA”
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Today's APPG on ME meeting is its AGM:




Sonya Chowdhury
@SonyaChowdhury

It is my fault there has been no posting on this. With sickness/vacancy, we have had virtually no comms capacity & this slipped off my radar. The APPG is today and the AGM. I will ask Carol to do recorded summary of meeting to share as mins not approved until the next mtg

8:27 AM · Feb 20, 2024
 
Dx Revision Watch said:
Today's APPG on ME meeting is its AGM:




Sonya Chowdhury
@SonyaChowdhury

It is my fault there has been no posting on this. With sickness/vacancy, we have had virtually no comms capacity & this slipped off my radar. The APPG is today and the AGM. I will ask Carol to do recorded summary of meeting to share as mins not approved until the next mtg

8:27 AM · Feb 20, 2024
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There is then a full APPG meeting after the AGM according to AfME.

This grates my gears somewhat; I appreciate that they are busy and short of resource as noted (and, I know a lot will have gone into the C4 News piece last night), but, these last minute awarenesses of meetings, don't allow anyone time to try to mobilise their MP to attend (even though of course, most of us know their MP won't attend despite being asked).

And they wonder why many will have little confidence in the APPG and the charities who are the secretariat - there will of course also be no live stream or recording of the meeting that pwME have been asking about for a long time either. These are the sorts of things that pwME will share and do some of the leg work in getting awareness out there.

This might be more for a different thread and I'll probably get roasted by some for being negative about AfME..but there is a recent history of cock-ups with scheduling, iirc, a room booking issue rescheduled one of the last meetings.
 
Given we could be having a general election any time from May onwards it is the twilight of this Parliament. Hopefully the APPG can pressure Dept of Health to finalise their plan we will see.
I have been talking to a person who will be a candidate and stands a chance of election. I said that ideally ME/CFS should be treated as a non partisan issue but that the DHSC plan whilst it should be continued if it is finalised should not be considered as anything than a bare minimum.
 
Fainbrog said:


There is then a full APPG meeting after the AGM according to AfME.

This grates my gears somewhat; I appreciate that they are busy and short of resource as noted (and, I know a lot will have gone into the C4 News piece last night), but, these last minute awarenesses of meetings, don't allow anyone time to try to mobilise their MP to attend (even though of course, most of us know their MP won't attend despite being asked).

And they wonder why many will have little confidence in the APPG and the charities who are the secretariat - there will of course also be no live stream or recording of the meeting that pwME have been asking about for a long time either. These are the sorts of things that pwME will share and do some of the leg work in getting awareness out there.

This might be more for a different thread and I'll probably get roasted by some for being negative about AfME..but there is a recent history of cock-ups with scheduling, iirc, a room booking issue rescheduled one of the last meetings.
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The APPG on ME's AGMs are usually held in May or March. Unclear why this one is being held so early - unless it is pre-empting the release of a date for a general election.
 
Dx Revision Watch said:
https://www.ipt.org.uk/Newsroom/details/What-happens-once-a-general-election-has-been-called

"As is laid down in statute, the dissolution of Parliament must take place 25 working days before the proposed polling day...

"House of Commons

"Once Parliament has been dissolved, all the seats in the House of Commons become vacant. This means that there are no MPs until after the general election. All business in the House comes to an end."
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If memory serves, APPGs have to be re-formed (or whatever the appropriate parliamentary terminology is) after every election too. Wonder how many of the members have already decided to step down at the next election - don't have the energy to look..
 
Dx Revision Watch said:
These minutes are not exactly informative, are they? Where's the detail?


15 November 2023:

https://appgme.co.uk/meetings/appg-meeting-15-november-2023/


06 February 2024 + AGM:

https://appgme.co.uk/meetings/annual-general-meeting-2024/


As someone has said on Twitter: "I've written more detailed grocery lists than those "minutes"."
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Sadly, it's a common gripe with the APPG. The short video that Carol Monaghan did on Twitter wasn't much more enlightening - but, I will acknowledge that it's better than nothing. I'd really like to see them streaming the meeting (the LC APPG proved that was possible), but that seems like a step beyond the capability (and maybe the interest) of those who are involved. Most disappointing.
 
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