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

Discussion in 'News from organisations' started by Andy, Feb 19, 2020.

  1. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    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”
     
    SNT Gatchaman, EzzieD, Ash and 11 others like this.
  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,890


    Today's APPG on ME meeting is its AGM:


    https://twitter.com/user/status/1759857371369615503


    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
     
    Kitty, Ash, Sean and 3 others like this.
  3. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    348
    Location:
    London, UK
    https://twitter.com/user/status/1759896515420570030


    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.
     
  4. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    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.
     
    Hutan, Peter Trewhitt, Kitty and 5 others like this.
  5. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,890

    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.
     
  6. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    I think that it is very sensible timing.
     
    Peter Trewhitt, Kitty and Fainbrog like this.
  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,890
  8. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    For an election at the same time as the local elections on 2 May it will need to be called in just over 5 weeks time.
     
    Ash, Peter Trewhitt and Kitty like this.
  9. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    348
    Location:
    London, UK
    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..
     
  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,890
    Binkie4, Ash, bobbler and 4 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    The candidate I’ve spoken with has said she will join the APPG if elected
     
    Binkie4, MEMarge, Dolphin and 7 others like this.
  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,319
    The ME association forgot to notify in advance too.
     
  13. Ash

    Ash Senior Member (Voting Rights)

    Messages:
    1,884
    Location:
    UK
    Everyone is sick and forgetful at once. We’re all in a lot of trouble aren’t we?
     
    Last edited by a moderator: Aug 15, 2024
  14. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    Amw66, MEMarge, Binkie4 and 12 others like this.
  15. Hutan

    Hutan Moderator Staff Member

    Messages:
    32,034
    Location:
    Aotearoa New Zealand
    Terrific stuff. Carol Monaghan is a star.
    Also well done to @NelliePledge for her work getting more organisations, like the APPG, on board with the Cochrane exercise therapy review campaign.
     
    alktipping, Amw66, Yann04 and 16 others like this.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    6,341
  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,890
  18. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    348
    Location:
    London, UK
    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.
     
    bobbler, alktipping, Ash and 2 others like this.
  19. Andy

    Andy Retired committee member

    Messages:
    23,703
    Location:
    Hampshire, UK
    alktipping, Sean, Hutan and 10 others like this.
  20. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    Good to see them addressing this it is so important
     
    alktipping, Sean, Hutan and 4 others like this.

Share This Page