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Maeve Boothby O'Neill - articles about her life, death and inquest

Discussion in 'General ME/CFS news' started by dave30th, Jan 27, 2023.

  1. dave30th

    dave30th Senior Member (Voting Rights)

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    Last edited by a moderator: Nov 28, 2023
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  2. Tia

    Tia Senior Member (Voting Rights)

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  3. Hutan

    Hutan Moderator Staff Member

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    That's a great and very sad article @dave30th
    There are a couple of minor errors with these paragraphs:

    The link goes through to the CDC, not NICE.
    And the final version of the NICE guideline refers to post-exertional malaise, not post-exertional symptom exacerbation (although the draft did use PESE rather than PEM).

    https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs
     
    Last edited: Jan 27, 2023
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  4. dave30th

    dave30th Senior Member (Voting Rights)

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    Thanks for highlighting! both are easily tweaked. It's always something. I'm glad to see the guideline itself does at least include this statement in its description of PEM: "Post-exertional malaise may also be referred to as post-exertional symptom exacerbation." Added: So perhaps what appeared in Coda could be viewed as more of an ambiguous statement rather than inaccurate? Hm. Editors might make that argument, I think.
     
    Last edited: Jan 27, 2023
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  5. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Merged thread

    When the doctor doesn’t listen - Coda Story (by David Tuller)

    https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/


    The medical establishment has a long history of ignoring patients with ‘unexplained’ symptoms. Long Covid might finally bring about a global attitude shift

    By David Tuller 27 January, 2023


    More at link:

    https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/
     
    Last edited by a moderator: Jan 28, 2023
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  6. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you @dave30th for your article. I hope more will learn from this tragedy.
     
  8. Andy

    Andy Committee Member

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    Trial By Error: My Article About the Life–and Preventable Death–of Maeve Boothby O’Neill

    "Last week, Codastory.com published an article I wrote about Maeve Boothby O’Neill, a 27-year-old in Exeter, England, who died in October, 2021, from complications of ME. The specific cause appears to have been malnutrition. Despite being alerted to the seriousness of Maeve’s condition, the local hospital resisted appeals to insert a feeding tube during her final months."

    https://www.virology.ws/2023/02/02/...nd-preventable-death-of-maeve-boothby-oneill/
     
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  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you again @dave30th for your follow-up article.

    It is desperately and horrifyingly frustrating to read of these situations.

    Where much of health care systems are concerned, pwME and those who care for them, might as well be screaming inside a soundproofed box.

    I agree with @Peter Trewhitt re his comment on your blog, severe, and very ME are torture.

    Even moderate and mild ME are horrible.

    How would everyone like to try to carry on with everyday activities while feeling flu-like for decades upon decades!
     
    Last edited: Feb 4, 2023
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  10. Sean

    Sean Moderator Staff Member

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    Any condition that includes in its criteria a 50% or more reduction in activity capacity is already bad even for 'mild' cases.
     
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  11. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Absolutely! I was just making sure that those reading, who may not know this disease, don't think mild and moderate cases of ME are a cake walk, in comparison to severe and very severe ME. This disease, is indeed all bad!

    Many of us suffering in the mild to moderate to moderate/severe ME range have experienced misunderstanding, when others see us doing things.

    People see us able, in one given instance to do something, and assume we can carry on very well all the time.

    When in reality, something simple like sitting upright at a computer, and paying an online bill takes all the energy we can muster.
     
    Last edited: Feb 4, 2023
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  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    Is there any other condition whereby a loss of 50 % function is categorised as mild

    If not then why and where did this definition come from
     
  13. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

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    Moved post

    https://www.thetimes.co.uk/article/...r-most-severe-me-cases-coroner-told-j3q7v7k9p

    HEALTH
    Hospitals have no services for most severe ME cases, coroner told
    Times journalist seeks answers after death of daughter aged 27


    new
    Will Humphries, Southwest Correspondent
    Monday November 27 2023, 6.15pm, The Times
    Health
    Law
    NHS

    The Times journalist Sean O’Neill with his daughter Maeve Boothby-O’Neill
    The Times journalist Sean O’Neill with his daughter Maeve Boothby-O’Neill
    SEAN O’NEILL

    The NHS’s inability to care for seriously ill patients with severe cases of the debilitating disease ME requires urgent attention, a hospital chief has told an inquest.

    Dr Anthony Hemsley, medical director of the Royal Devon & Exeter hospital, revealed in written evidence there was no NHS guidance to staff and no specialist services anywhere in the country to handle acute ME cases.

    Hemsley said the “gap in service” needed to be rectified and “action is required at the highest level.”

    Maeve Boothby-O’Neill, the daughter of the Times journalist Sean O’Neill, died two years ago after becoming bedbound and finding the simple act of chewing exhausting.

    She had three admissions to the Royal Devon & Exeter Hospital before her death and an inquest will be held to examine some of its clinical decisions, including the alleged refusal to offer procedures that might have saved her life.

    [...]
    O’Neill told the coroner’s court: “When Maeve concluded that the hospital was unable and indeed unwilling to provide the treatment she needed, she was right.

    [...]
    The GP, who was committed to her care, wrote: “Several doctors involved in her care stated they do not believe ME is a medical problem.”

    [...]

    Boothby-O’Neill’s family want Deborah Archer, assistant coroner for Plymouth, Torbay and South Devon, to hold an Article 2 inquest to consider whether systemic or policy based failures could have caused her death. Article 2 of the European Convention on Human Rights protects people’s “right to life”.

    If someone has died while under the care of the state then Article 2 can be engaged, which allows the coroner to look deeper at the context and background of the death than in a normal inquest.

    O’Neill told the coroner that Hemsley was describing “a failure to protect not just Maeve’s life but the lives of those, like Maeve, with severe ME.”

    “This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness,” he said. “This is a nationwide failure to help ME sufferers. This is the very definition of a major systemic failing.

    “In my view this is an admission that there was a breach of the duty to protect someone who was in the care of the state … That breach, in the form of an admitted inability by the NHS to provide care, led directly to Maeve’s death.”

    During the pre-inquest review hearing, Archer told the family the inquest could not take on the role of a public inquiry. “The focus is to look at the specific inquest of Maeve and then to look at whether I should write a report to prevent further deaths,” she said.

    “This isn’t a public inquiry, so we aren’t looking at issues like government funding, policies and the national or international treatment of ME. Those are matters that are beyond the scope of an inquest.”

    Archer said she would make a decision on whether to allow an Article 2 inquest in the coming days.
     
    Last edited by a moderator: Nov 28, 2023
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  14. Amw66

    Amw66 Senior Member (Voting Rights)

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  15. Andy

    Andy Committee Member

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    Text of tweet, "“O’Neill told the coroner’s court: “When Maeve concluded that the hospital was unable and indeed unwilling to provide the treatment she needed, she was right.” Article: ‘Hospitals have no services for most severe ME cases, coroner told’"

    Also links to an article from The Times newspaper, "Hospitals have no services for most severe ME cases, coroner told: Times journalist seeks answers after death of daughter aged 27", paywalled https://www.thetimes.co.uk/article/...r-most-severe-me-cases-coroner-told-j3q7v7k9p
     
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  16. Trish

    Trish Moderator Staff Member

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  17. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Good point.
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    A Father’s Fight: Journalist Exposes Healthcare System’s Failings in Treating ME
    https://bnn.network/breaking-news/h...s-healthcare-systems-failings-in-treating-me/
     
    Last edited by a moderator: Nov 30, 2023
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  19. Fizzlou

    Fizzlou Senior Member (Voting Rights)

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    Just listened to David Tuller’s interview with Sarah. Also read Janet Dafoe’s tweeted feedback.

    Original Coroner replaced with new one some time ago. New Coroner ‘found’ her own choice of ‘expert witness’ - Alistair Miller.
     
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  20. JemPD

    JemPD Senior Member (Voting Rights)

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    Oh no
     
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