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

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dave30th

Senior Member (Voting Rights)
Coda article, When the doctor doesn't listen, David Tuller (focus on Maeve O'Neill's story)

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


Moderator note:
We have an In Memory thread for Maeve here: Maeve O'Neill
For general discussion of the topic please go to this thread: A discussion about feeding issues in the severely ill.

Discussion of the coroner's Prevention of Future Deaths report: starts here
Direct link to the coroner's Prevention of Future Deaths report
 
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That's a great and very sad article @dave30th
There are a couple of minor errors with these paragraphs:

On October 31, 2021 — less than a month after Maeve’s death — the U.K.’s National institute for Health and Care Excellence, or NICE, issued new clinical guidelines for ME/CFS that reversed the agency’s own prior recommendations for the two treatments. In a review of studies, NICE assessed the quality of evidence in favor of GET and CBT, including from the PACE trial, as either “very low” or merely “low.”

The new guidelines highlighted the symptom of post-exertional malaise, which it called post-exertional symptom exacerbation, and warned of possible harms from graded exercise. The guidelines approved of psychotherapy for supportive care only — not as a curative treatment.
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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
 
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Hutan said:
There are a couple of minor errors with these paragraphs:
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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.
 
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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

In 2017, the London Review of Books published a commentary from an anonymous young woman with a prolonged illness that had seriously impaired her ability to care for herself. The situation was “infuriating,” she wrote in the short but impassioned article.

“Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do,” she wrote.

That young correspondent, Maeve Boothby O’Neill, spoke Russian, listened to jazz and read constantly. She loved musical theater, especially the shows “Wicked,” “Billy Eliot” and “Into the Woods.” She was plotting out a series of 1920s mystery novels set in the villages of Dartmoor, an upland expanse of bogs and rivers and rocky hills in southwest England where Maeve and her mother had once lived.

Maeve died on October 3, 2021. She was 27. On the death certificate, her physician noted “myalgic encephalomyelitis” — an alternate name for the illness known as chronic fatigue syndrome — as the cause. It is rare for a death to be attributed to either ME or CFS.

An inquest into the circumstances, including the actions (and inactions) of clinicians and administrators at the local arm of the National Health Service, or NHS, is expected to be held later this year. Maeve was diagnosed with the illness in 2012, after several years of poor health. She fought hard to access appropriate medical care and social service support from institutions and bureaucracies that did not seem to understand the disease.
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More at link:

https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/
 
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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/
 
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!
 
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Sean said:
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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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.
 
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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.
 
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Amw66 said:
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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
 
A Father’s Fight: Journalist Exposes Healthcare System’s Failings in Treating ME
In the luminescence of a new day, Sean O’Neill, an esteemed journalist of The Times, has unveiled a personal cross he bore, a crucible that has put into stark relief the trials and tribulations faced by patients of Myalgic Encephalomyelitis (ME)—also known as Chronic Fatigue Syndrome—and their families. His daughter’s poignant journey through the labyrinth of an illness characterized by extreme fatigue and a host of other symptoms, and her eventual demise, has opened a window into the lacunae in the healthcare system’s recognition and treatment of ME.

Illness Unacknowledged, Care Undelivered
ME, a long-term illness, lives in the shadows of medical skepticism. O’Neill’s narrative starkly illuminates these shadows, recounting how he had to ‘fight’ for his daughter’s palliative care. The fight was not just against the debilitating disease but against a healthcare system that often relegated it to the sidelines. The death, he describes, was ‘painful and difficult,’ a reflection of the struggle to secure appropriate care and support.

Reflecting Broader Healthcare Issues
O’Neill’s personal ordeal transcends the individual and echoes the experiences of countless others grappling with illnesses that lack widespread acknowledgement in the medical profession. The skepticism towards ME is a microcosm of a broader issue—the lack of understanding and management of several such conditions that exist on the peripheries of mainstream medical consciousness.
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https://bnn.network/breaking-news/h...s-healthcare-systems-failings-in-treating-me/
 
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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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