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United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

Discussion in 'General ME/CFS news' started by Sly Saint, Feb 23, 2023.

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Page 6 of 15
  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Location:
    Aotearoa New Zealand
    Update on Karen's situation (change.org) —

     
    SNT Gatchaman, Dec 21, 2023
    #101
    MEMarge, Midnattsol, Solstice and 9 others like this.
  2. Midnattsol

    Midnattsol Moderator Staff Member

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    I hope she gets her own room, and that the total parental nutrition will help.
     
    Midnattsol, Dec 21, 2023
    #102
    MEMarge, Solstice, ukxmrv and 7 others like this.
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    My heart goes out to Karen and her family .
     
    Amw66, Dec 21, 2023
    #103
    MEMarge, Sean, ukxmrv and 7 others like this.
  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Feb 18, 2024
    #104
    Ash, MEMarge, bobbler and 3 others like this.
  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    Last edited by a moderator: Feb 27, 2024
    Amw66, Feb 20, 2024
    #105
    Ash, SNT Gatchaman, Sid and 5 others like this.
  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Dx Revision Watch, Feb 23, 2024
    #106
    bobbler, Peter Trewhitt, Sid and 1 other person like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
    UK West Midlands
    Moderation post

    in view of the comments about the information on Millie no longer being accurate we are reviewing posts made. Please consider carefully before making any further comments.
     
    NelliePledge, Feb 23, 2024
    #107
    Lou B Lou, Peter Trewhitt, SNT Gatchaman and 4 others like this.
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    There is now a change.org petition relating to Millie’s current situation, see https://www.change.org/p/save-milli...-Dgk1uGl2QENZ50lkpRLiIWJsqTtP-KqLqR5wqaapMQo8

    It was posted by Abi Mills with the following objectives:

     
    Peter Trewhitt, Feb 23, 2024
    #108
    MEMarge, bobbler, SNT Gatchaman and 6 others like this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    A reminder this thread is for social media and general media items about people in the United Kingdom with both ME/CFS and severe problems in achieving adequate nutrition. Please avoid speculating about the health or other personal aspects of people mentioned.

    There is general discussion about severe problems with achieving adequate nutrition here: Severe difficulties with eating in ME/CFS. That thread is also a good place to post about any personal experience of tube feeding and other methods of medical assistance for feeding that you have had.
     
    NelliePledge, Feb 23, 2024
    #109
    Hutan, bobbler and Peter Trewhitt like this.
  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Julie Houston @JulesAHouston has posted a further update on Twitter/X.

    Unless an update or statement has been issued by the family, I am not going to post further updates or links to updates from third parties.
     
    Dx Revision Watch, Feb 24, 2024
    #110
    bobbler, Sean, Marhalhud and 3 others like this.
  11. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Last edited by a moderator: Feb 27, 2024
    Dx Revision Watch, Feb 27, 2024
    #111
    Hutan, Annie, Ash and 12 others like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Feb 27, 2024
    #112
    Ash, bobbler, Sean and 10 others like this.
  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    Cards for Millie. ETA no postcode in screenshot
    Screenshot_20240227-223722~2.png
     
    Amw66, Feb 27, 2024
    #113
    bobbler, Peter Trewhitt and Dolphin like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Millie McAinsh
    Lancaster Suite
    Acute Ward
    Royal Lancaster Infirmary
    Ashton Road
    Lancaster
    LA1 4RP
    United Kingdom
     
    Dolphin, Feb 27, 2024
    #114
    Ash, bobbler and Peter Trewhitt like this.
  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thank you
     
    Amw66, Feb 27, 2024
    #115
    bobbler, Peter Trewhitt and Dolphin like this.
  16. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Bravo Drs Weir and Speight, and all those who shone sunlight on darkness.
     
    SNT Gatchaman, Feb 28, 2024
    #116
    Hutan, Annie, Ash and 12 others like this.
  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Dx Revision Watch, Mar 1, 2024
    #117
    Hutan, Solstice, Binkie4 and 5 others like this.
  18. Amw66

    Amw66 Senior Member (Voting Rights)

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    Last edited by a moderator: Mar 1, 2024
    Amw66, Mar 1, 2024
    #118
    Solstice, Ash, SNT Gatchaman and 10 others like this.
  19. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    "The NICE guidelines have now been read by the hospital and the staff are trying to follow them."
     
    SNT Gatchaman, Mar 1, 2024
    #119
    MEMarge, Solstice, Sid and 5 others like this.
  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    According to Sarah Boothby on Twitter, there has been a request to "respect the #SaveMillie call for a pause [on all direct activism]".

    I have asked Sarah if there is a statement from the family to this effect that I can post here as it's not entirely clear to me what is being asked specifically to be put on pause.

    Edited to add: No statement directly from the family that I can find but it appears that a call, on behalf of the family, for a pause in the sending of letters directly to the hospital is being asked for in the context of the issue of multiple copies of a letter by a high profile patient and advocate being sent to the hospital or to PALS:


    https://twitter.com/user/status/1763709362734776536


    Edited to add:

    https://twitter.com/user/status/1763701620246814754


    The Real M.E.
    @therealmecfs


    1/2 Hi everyone, there is a lot of confusion and about sending letters to the hospital. I am currently speaking with the family about what they want but they are understandably busy caring for #Millie if I could kindly ask everyone to pause sending letters to the hospital, https://x.com/therealmecfs/s/therealmecfs/status/1763708678543200603

    11:03 PM · Mar 1, 2024
     
    Last edited: Mar 2, 2024
    Dx Revision Watch, Mar 2, 2024
    #120
    MEMarge, Solstice, Sean and 2 others like this.
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