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

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

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Page 15 of 16
  1. Fainbrog

    Fainbrog Senior Member (Voting Rights)

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    Location:
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    Fainbrog, Dec 2, 2024
    #281
    Kalliope, bobbler, Sly Saint and 6 others like this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    4,711
    Fingers crossed. Good news that it is again up and running following the general election.

    I need to be writing to my MP. Have a new one and I know next to nothing about him.
     
    Peter Trewhitt, Dec 2, 2024
    #282
    bobbler, MEMarge, Fizzlou and 3 others like this.
  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    1,712
    APPG 17th December 2024
     

    Attached Files:

    Suffolkres, Dec 2, 2024
    #283
    Sean, Trish, Fainbrog and 1 other person like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    4,711
    I noted the agenda and draft MP letter used just ME rather than ME/CFS. Given the NICE guidelines use ME/CFS shouldn’t we be using that in official contacts? I try to remember to use ME/CFS in referring to our condition in general though I still use ME in referring to myself more informally.

    Checking on social media it seems that both Action for ME and the MEA are referring to the group as the APPG on ME. Is that an inappropriate choice of name?
     
    Peter Trewhitt, Dec 2, 2024
    #284
    bobbler, Robert 1973, MEMarge and 5 others like this.
  5. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    2,739
    Very pleased to see this. My new MP committed to finding out about the APPG with a view to joining. I have sent this to him.
     
    Binkie4, Dec 2, 2024
    #285
    Sean, Yann04, JohnTheJack and 2 others like this.
  6. JohnTheJack

    JohnTheJack Moderator Staff Member

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    4,870
    JohnTheJack, Dec 2, 2024
    #286
    Sean, Yann04 and Peter Trewhitt like this.
  7. JohnTheJack

    JohnTheJack Moderator Staff Member

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    4,870
    The new chairman of Rangers football club was in contact with me over the weekend after I sent him a briefing note a couple of weeks ago. He thinks it's 'incredible to think that 40 years of science has not been able to make any viable improvements to ME patients' lives' and has asked me to put him touch with Chris Ponting to arrange a meeting between them. Chris has agreed and I've sent Malcolm back Chris's details.
     
    JohnTheJack, Dec 2, 2024
    #287
    Missense, Amw66, tornandfrayed and 22 others like this.
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    5,381
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    UK
    That's amazing - well done!
     
    Sasha, Dec 2, 2024
    #288
    Missense, tornandfrayed, bobbler and 7 others like this.
  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    4,870
    JohnTheJack, Dec 2, 2024
    #289
    bobbler, Robert 1973, NelliePledge and 2 others like this.
  10. Yann04

    Yann04 Senior Member (Voting Rights)

    Messages:
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    Location:
    Romandie (Switzerland)
    Depending on what happens might test my preference for Celtic football club ahha.

    In all seriousness, congratulations!
     
    Yann04, Dec 2, 2024
    #290
    Missense, JohnTheJack and Peter Trewhitt like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    I texted my MP about this she says Jo Platt is a couple of offices away from her and she’ll pop in to see her :)
     
    NelliePledge, Dec 2, 2024
    #291
    Missense, bobbler, Fainbrog and 6 others like this.
  12. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    NelliePledge, Dec 2, 2024
    #292
    Missense, bobbler, JohnTheJack and 2 others like this.
  13. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    348
    Location:
    London, UK
    I think one of the Tweets from the MEA said Jo Platt was putting herself forward as chair, so, perhaps some of the reporting has put the cart slightly before the horse, but, assume its probably a done deal.
     
    Fainbrog, Dec 2, 2024
    #293
    Missense, bobbler, Peter Trewhitt and 1 other person like this.
  14. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    4,870
    OK, thanks. That makes sense, as I heard from another source that they had the four officers necessary.
     
    JohnTheJack, Dec 2, 2024
    #294
    tornandfrayed, Binkie4, Fainbrog and 1 other person like this.
  15. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    5,103
    Location:
    Cornwall, UK
    I've emailed my MP to ask him to attend. He's LibDem Ben Maguire.
     
    MeSci, Dec 3, 2024
    #295
    Binkie4, Missense, boolybooly and 7 others like this.
  16. boolybooly

    boolybooly Senior Member (Voting Rights)

    Messages:
    672
    I wrote to my MP Gen Kitchen (Wellingborough) and invited her to attend the Dec 17th APPG inaugural meeting.

    I am quite curious to know whether she did, is there any way to find out?
     
    boolybooly, Dec 19, 2024
    #296
    Missense, Kitty, JohnTheJack and 3 others like this.
  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    4,711
    Looking at the page https://appgme.co.uk/who-we-are/ it seems that Action for ME and the MEA are continuing to provide secretarial support for the APPG, but if I remember correctly before ‘minutes’ were a bit hit and miss appearing on line.
     
    Peter Trewhitt, Dec 19, 2024
    #297
    Missense, Kitty, JohnTheJack and 4 others like this.
  18. boolybooly

    boolybooly Senior Member (Voting Rights)

    Messages:
    672
    Well its good of them and I expect those involved must be volunteers and might even have ME themselves so all is forgiven.

    I notice the chair and officers have changed since I wrote, I suppose that was a result of the meeting and new parliament. Might be a good excuse to write to my MP again and let her know about the changes.
     
    boolybooly, Dec 20, 2024
    #298
    Missense, Kitty, JohnTheJack and 3 others like this.
  19. Trish

    Trish Moderator Staff Member

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    58,800
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    MEA and AfME employ secretarial and other staff who I assume would perform this role.
     
    Trish, Dec 20, 2024
    #299
    Missense, Kitty, boolybooly and 2 others like this.
  20. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,696
    Location:
    UK West Midlands
    Good to see clear cross party approach in the officers of the new APPG. There are definitely other MPs who aren’t officers who have joined the group (I think there’s a minimum number they need to be an APPG - 20 rings a bell )
    And my MP has let me know she joined she’s not listed here - not an officer.
     
    NelliePledge, Dec 20, 2024
    #300
    Missense, Kitty, Binkie4 and 6 others like this.
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