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UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

Discussion in 'News from organisations' started by Andy, Jun 21, 2022.

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Page 3 of 16
  1. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,511
    Location:
    UK
    The email I got was just stating the embargo was lasting longer than first stated. So informal rather than a formal statement.
     
    Adrian, Aug 9, 2023
    #41
    Arvo, Ariel, Peter Trewhitt and 6 others like this.
  2. Andy

    Andy Committee Member

    Messages:
    22,305
    Location:
    Hampshire, UK
    Well, it wasn't released at 5pm as suggested earlier.
     
    Andy, Aug 9, 2023
    #42
    Arvo, Ariel, bobbler and 7 others like this.
  3. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    958
    I wonder if someone is waiting to publish 5 minutes before they leave the office for their 2 week holiday?
    Let someone else deal with the angry phone calls from the BPS crew.
     
    John Mac, Aug 9, 2023
    #43
    janice, Ariel, Daisy and 7 others like this.
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,265
    Is technical problems a way to say Wessely problems?
     
    Hoopoe, Aug 9, 2023
    #44
    AknaMontes, janice, Ariel and 7 others like this.
  5. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    226
    Location:
    London, UK
    Fainbrog, Aug 9, 2023
    #45
    MEMarge, Arvo, Joan Crawford and 18 others like this.
  6. chillier

    chillier Senior Member (Voting Rights)

    Messages:
    194
    chillier, Aug 9, 2023
    #46
    adambeyoncelowe, JemPD, Ariel and 7 others like this.
  7. Keela Too

    Keela Too Senior Member (Voting Rights)

    Messages:
    1,329
    Location:
    Sally Burch - Northern Ireland
    Phew! I was getting worried.
     
    Keela Too, Aug 9, 2023
    #47
    adambeyoncelowe, MEMarge, Arvo and 8 others like this.
  8. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,592
    Location:
    North-West England
    Is there really no PDF?

    EDIT: Ok, I can print to PDF, but strange to have no direct download link.
     
    Last edited: Aug 9, 2023
    InitialConditions, Aug 9, 2023
    #48
    adambeyoncelowe, Lucibee, MEMarge and 5 others like this.
  9. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,919
    Location:
    UK
    63 pages though ... :confused:
     
    Kitty, Aug 9, 2023
    #49
    adambeyoncelowe, Arvo, Daisy and 1 other person like this.
  10. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    Messages:
    1,052
    Location:
    London, UK
    Is there any plan for S4ME to do a collective response, approved by members? That would not preclude us from responding individually as well.
     
    Shadrach Loom, Aug 9, 2023
    #50
    adambeyoncelowe, JellyBabyKid, Ali and 8 others like this.
  11. chillier

    chillier Senior Member (Voting Rights)

    Messages:
    194
    It's the kind of thing that would be good to have an audio version of or maybe a digest so it's accessible to as many pwME as possible
     
    chillier, Aug 9, 2023
    #51
    adambeyoncelowe, Annie, Kitty and 4 others like this.
  12. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    226
    Location:
    London, UK
    Fainbrog, Aug 9, 2023
    #52
    adambeyoncelowe, Lidia Thompson, MEMarge and 12 others like this.
  13. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    226
    Location:
    London, UK
    We all have trust issues
     
    Fainbrog, Aug 9, 2023
    #53
    adambeyoncelowe, rvallee, Arvo and 9 others like this.
  14. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    Messages:
    1,052
    Location:
    London, UK
    Acute and primary especially …
     
    Shadrach Loom, Aug 9, 2023
    #54
    adambeyoncelowe, Kitty, JemPD and 4 others like this.
  15. Keela Too

    Keela Too Senior Member (Voting Rights)

    Messages:
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    With good reason!
    This is already later than anticipated.

    I was getting some deja-vu, after how things went with NG206.
     
    Keela Too, Aug 9, 2023
    #55
    adambeyoncelowe, AknaMontes, MEMarge and 13 others like this.
  16. chillier

    chillier Senior Member (Voting Rights)

    Messages:
    194
    chillier, Aug 9, 2023
    #56
    adambeyoncelowe, RedFox, Arvo and 12 others like this.
  17. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,592
    Location:
    North-West England
    Yes, was wondering this. There are two potential issues/considerations: (i) is it better to have 50 responses saying roughly the same things compared with just one, and (ii) the response form looks like it might assume responses are from individuals.
     
    Last edited: Aug 9, 2023
    InitialConditions, Aug 9, 2023
    #57
    adambeyoncelowe, RedFox, MEMarge and 9 others like this.
  18. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

    Messages:
    44
    In response to point (ii), the first question is "In what capacity are you responding to this survey?"
    with the following options as responses
    An individual sharing my personal views and experiences including carers and family members
    An individual sharing my professional views
    On behalf of an organisation
    On behalf of someone else
    "
     
    Tao Fogger, Aug 9, 2023
    #58
    adambeyoncelowe, RedFox, MEMarge and 8 others like this.
  19. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    Messages:
    1,052
    Location:
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    You can make it explicit that a response is organisational, or are we looking at different things?

    E2A: xposted with @Tao Fogger
     
    Shadrach Loom, Aug 9, 2023
    #59
    adambeyoncelowe, Hutan, Kitty and 5 others like this.
  20. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,592
    Location:
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    ah ok, that's good.
     
    InitialConditions, Aug 9, 2023
    #60
    adambeyoncelowe, Kitty, Binkie4 and 2 others like this.
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