The Times today: Article on ME and Maeve Boothby O'Neill's Inquest next week.

[Countrygirl]

Over the next fortnight Maeve Boothby O'Neill's inquest will take place in Exeter.
Today, her father Sean O'Neill, journalist for The Times has written an article that includes information about her.

I will attach a pdf copy of it incase it is behind a paywall for you.

Sajid Javid: Labour must deliver on ME as patients suffer without a cure​

The former health secretary’s call to action coincides with a landmark inquiry into the death of Maeve Boothby O’Neill, the eldest daughter of The Times’ senior writer Sean O’Neill

by Fiona Hamilton



Friday July 19 2024, 4.00pm, The Times
https://www.thetimes.com/topic/health
https://www.thetimes.com/topic/uk-politics

Sir Sajid Javid was the first senior minister to challenge the medical attitude that the disease was only psychological, when he was health secretary in 2021-2022
TIMES PHOTOGRAPHER RICHARD POHLE

The new Labour government must urgently implement a long-delayed strategy to improve the treatment and understanding of the debilitating illness myalgic encephalomyelitis (ME), Sir Sajid Javid has said.
The former health secretary warned that ME patients, who suffer severe symptoms and are often faced with sceptical attitudes from the medical profession, have been “left behind for too long”.
Javid called on Labour to finish the work he began as health secretary in 2021-22 to develop a plan for patient care and new research into the condition, which is also known as chronic fatigue syndrome (CFS) and has no known cure, and affects at least 250,000 people in Britain.


Javid’s intervention comes ahead of a landmark inquest which begins on Monday into the death of Maeve Boothby O’Neill, who suffered from ME and died aged 27 in October 2021.
Maeve was the eldest daughter of Sean O’Neill, a senior writer at The Times, who has reported on the need for better research on the condition and the improvement of patient care. O’Neill has also highlighted the dismissive attitude offered by many in the medical profession towards the illness................................................

The Wonford hospital declined to comment..........you bet they did, especially as they are still treating a very severe patient appallingly.

 

[southwestforests]

Good grief. Appalling is a good word for there still being such attitudes toward the disease.

During the several years I was inactive here, also took a break from doing much looking for info about ME/CFS.
Until an internet friend in Surrey was diagnosed with Long Covid and I kept telling Julie that she would end up being diagnosed with ME/CFS.
After a year or so, that diagnosis was indeed delivered.
Even though she, 58 years old, is a retired (pre-pandemic timing) pediatric nurse with a few other health things going on, she had minimal knowledge of ME/CFS and what info she's gotten from 'The System' sounds a bit dodgy, to use a British word.

Being 4,000 miles away from Britain and not exactly deluged with news from there, I just went looking for more info about Maeve and the situation.

Aw man, she was an interesting person,
Who can imagine what she would still be bringing to life and this world if she'd gotten proper care ...

From David Tuller, an important contributor in this ME/CFS world,

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

As it turned out, I had previously met her mum, Sarah Boothby, at a conference several years earlier in Bristol. At the time she had mentioned that she was caring for her daughter, but I didn’t made the connection that she was Maeve’s mother until we met again last summer–first on zoom and then at her flat in Exeter.

While working on the piece, I was very aware that both parents would not only be reading what I wrote but would have to live with it as a public representation of their daughter and her experience. It can be especially challenging to write about people who are no longer here and cannot speak for themselves. Often they end up becoming more the objects of scrutiny and comment by others rather than subjects of their own stories.

In this case, my task was made easier because I had access to Maeve’s own writings–from e-mail exchanges, journals, applications for benefits, etc. She was funny and feisty and a really good writer! I wanted to include more but had to make hard choices. Unfortunately, that meant not highlighting Shelf Absorption, a quirky and entertaining site devoted to “everything you ever wanted to know about other people’s bookcases.” Maeve and a friend created it during the early days of the pandemic. I highly recommend checking it out.

From David's 27 January 2023 article which he is talking about above,

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

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.

 

[BrightCandle]

I hope this marks the beginning of two weeks of coverage from the times on the inquest into Maeve's death and I sure hope the inquest finds what is self evidently true that Maeve's death was a systemic failure not just by the hospital and trust but entire NHS.

 

[Countrygirl]

https://archive.ph/KHhip

The Telegraph

NHS treatment for ME patients to be examined​

A 27-year-old woman, who died in October 2021, faced barriers to receiving proper care

Michael Searles, HEALTH CORRESPONDENT19 July 2024 • 4:42pm

Maeve Boothby-O'Neill died aged 27 in October 2021, with her parents saying the NHS has no way to treat myalgic encephalomyelitis (ME)
A lack of NHS treatment for people with myalgic encephalomyelitis (ME) is set to be interrogated at an inquest into the death of a 27-year-old woman, who died after being discharged from hospital.
Maeve Boothby-O’Neill died in October 2021, after battling myalgic encephalomyelitis – also referred to as chronic fatigue syndrome (CFS) – for more than half her life, until she was no longer able to eat or drink.
She faced barriers to receiving proper care right up until her death as she tried to convince doctors her illness was real – which her parents say also caused delays in her receiving end-of-life care.

A long-awaited Government delivery plan to improve NHS services has been beset by delays since being unveiled by Sajid Javid two years and three health secretaries ago.
It’s thought Miss Boothby-O’Neill developed ME after a viral infection left her feeling constantly exhausted at the age of 12 – but it took five more years for it to be given a name.
Her condition drastically deteriorated in the months leading up to her death, which saw her admitted to Royal Devon and Exeter Hospital three times – she rejected a fourth admission, feeling there was no prospect of treatment..................

 

[Countrygirl]

https://www.thetimes.com/article/eb...TMXhzhL6erCJl5SX58_aem_hv91ENFr3Ed2G8Rd2KXKAA

‘My child died of ME’: a scandal waiting for its Post Office moment​

Sean O’Neill is dreading his daughter’s inquest but hopes it will show the nation how people with the condition are routinely stigmatised and ignored by the NHS

Sean O’Neill
Friday July 19 2024, 4.00pm, The Times
https://www.thetimes.com/topic/health
https://www.thetimes.com/topic/uk-news

Sean O’Neill with his daughter Maeve, who died of ME aged 27 in 2021. She had three hospital admissions, which failed to alleviate her condition

In May I attended a debate in parliament to mark World ME Day. It was the day before the local elections so the attendance was small, yet there was something striking about what unfolded.
Across the political spectrum, from Danny Kruger on the Tory right all the way to John McDonnell on the Labour left, MPs spoke with one voice to articulate the anxieties of constituents with ME who felt dismissed, stigmatised and neglected by the NHS and the medical profession.
My daughter Maeve died, aged 27, in October 2021 after her severe ME became acute. She had three hospital admissions which failed to alleviate her condition. An inquest will open in Exeter next week to examine her death.

 

[Countrygirl]

Maeve's inquest lead item BBC Radio 4 News at 7am​

 

[Countrygirl]

https://www.bbc.co.uk/sounds/play/live:bbc_radio_fourfm

It starts at 7.40 am

 

[Countrygirl]

Adam has recorded it here: