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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 18
  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    5,761
    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
    Binkie4, MEMarge, Solstice and 8 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. Braganca

    Braganca Senior Member (Voting Rights)

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    353
    There appear to be multiple patients in extreme physical danger dealing with NHS failures right now.

    Someone is reporting on Phoenix rising about a teenager who is unable to eat or drink and is no longer responsive being denied care and advised to do Get. Am I allowed to link to PR?
    https://forums.phoenixrising.me/thr...r-articles-on-me-about-to-be-published.91562/

    there is also this report on Twitter about Maria Louise Williams:
    https://twitter.com/user/status/1756698970099781707


    And the case of 37 year old Karen Gorden.
    https://twitter.com/user/status/1757438812374945822
     
    Braganca, Feb 14, 2024
    #104
    Louie41, MEMarge, Fainbrog and 5 others like this.
  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Feb 18, 2024
    #105
    Binkie4, Ash, MEMarge and 4 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    Last edited by a moderator: Feb 27, 2024
    Amw66, Feb 20, 2024
    #106
    Ash, SNT Gatchaman, Sid and 5 others like this.
  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    3,424
    Dx Revision Watch, Feb 23, 2024
    #107
    Binkie4, bobbler, Peter Trewhitt and 2 others like this.
  8. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
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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
    #108
    Binkie4, Lou B Lou, Peter Trewhitt and 5 others like this.
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    4,081
    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
    #109
    Binkie4, MEMarge, bobbler and 7 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    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
    #110
    Binkie4, Hutan, bobbler and 1 other person like this.
  11. 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
    #111
    Binkie4, bobbler, Sean and 4 others like this.
  12. 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
    #112
    Hutan, Annie, Ash and 12 others like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Feb 27, 2024
    #113
    Ash, bobbler, Sean and 10 others like this.
  14. 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
    #114
    bobbler, Peter Trewhitt and Dolphin like this.
  15. 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
    #115
    Ash, bobbler and Peter Trewhitt like this.
  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thank you
     
    Amw66, Feb 27, 2024
    #116
    bobbler, Peter Trewhitt and Dolphin like this.
  17. 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
    #117
    Hutan, Annie, Ash and 12 others like this.
  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Dx Revision Watch, Mar 1, 2024
    #118
    Hutan, Solstice, Binkie4 and 5 others like this.
  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    Last edited by a moderator: Mar 1, 2024
    Amw66, Mar 1, 2024
    #119
    Solstice, Ash, SNT Gatchaman and 10 others like this.
  20. 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
    #120
    MEMarge, Solstice, Sid and 5 others like this.
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