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

Death prompts Devon hospital chief to speak out on 'ignored' illness

We highlight the case of 27-year-old Maeve Boothby-O’Neill on International Day of Persons with Disabilities (December 3)

A lack of care for severely ill patients with acute Myalgic Encephalomyelitis (ME) and an urgent need for change has been highlighted by a hospital chief during the pre-inquest of a 27-year-old Exeter woman who died while battling the condition. Dr Anthony Hemsley, medical director of the Royal Devon and Exeter Hospital (RD&E), is calling for action at the 'highest level' to meet the 'gap in service'.

Maeve Boothby-O’Neill, an aspiring writer, passed away on October 3, 2021, after her health had deteriorated to the extent that she was unable to sit up and any food or drink she consumed was given to her by someone else via a syringe which was said to be the only equipment provided to the family at an earlier pre-inquest hearing in September 2022.

She had three admissions to the RD&E before her death and refused a fourth admission, believing clinicians were not helping and her symptoms were only getting worse under their watch. Each time she was discharged it was into the sole care of her mother Sarah Boothby who had to give up work to provide her daughter with around-the-clock care because she was so poorly.
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https://www.devonlive.com/news/devon-news/death-prompts-devon-hospital-chief-8940687
 
It looks like Sean O'Neill will be interviewed in 15 minutes (2030 UTC) on Radio New Zealand Saturday, along with Prof Warren Tate for those who wish to listen live (button top right of web page). There is usually a later download.

An inquest hearing in the UK has heard how 27 year old Maeve Boothby-O'Neill died from complications relating to ME, following years of inadequate care from the National Health Service.

At least 25-thousand people live with ME (Myalgic Encephalomyelitis), also known as chronic fatigue syndrome in New Zealand.

The real number is likely higher, due to the nature of it being an 'invisible illness'.

Maeve's father Sean O'Neill is a Times correspondent. He is joined by leading researcher in ME/CFS in New Zealand, University of Otago Emeritus Professor Warren Tate.
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ETA: https://www.rnz.co.nz/national/prog...ted-and-isolated-living-and-dying-with-me-cfs

(I wish the news had come on before Warren offered up "mediation and yoga" as two of the things that could help pwME.)
 
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Daughter's death 'could have been avoided'

The mother of a woman who died after being discharged from hospital with Myalgic Encephalomyelitis (ME) says the NHS has no way to treat the condition.

Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021.

A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients.

The Department of Health said it recognised ME could be incredibly disabling and it was committed to improving care and support.

Maeve's mum, Sarah Boothby, believes her daughter's death could have been avoided.

https://www.bbc.co.uk/news/uk-england-devon-67748453
 
Andy said:
Daughter's death 'could have been avoided'

The mother of a woman who died after being discharged from hospital with Myalgic Encephalomyelitis (ME) says the NHS has no way to treat the condition.

Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021.

A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients.

The Department of Health said it recognised ME could be incredibly disabling and it was committed to improving care and support.

Maeve's mum, Sarah Boothby, believes her daughter's death could have been avoided.

https://www.bbc.co.uk/news/uk-england-devon-67748453
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There is no avoiding a bald truth of this: The death of Maeve and others is squarely the responsibility of the BPS brigade, especially the "well known names" who have subverted science and medical care for ME/CFS sufferers down the decades, in their greed for prestige and acclaim etc. But even when the truth is unassailable one day, I very much doubt there will be any contrition or shame.
 
Long Thread so have copy pasted

Long My daughter's voice, 4 Jan 2021 (NICE had published revised draft guidance for ME/CFS Nov 2020) 'I have been tired since I was 13. When I was 18 I was diagnosed with CFS/ME. I hoped diagnosis would help, that I would finally get treatment and recover my health. 1/

'I had every potential to be an asset to humanity, and hoped and intended to advance the cause of human flourishing - I achieved A* and A grade A levels, and had offers from Russell Group universities. I had to reject them all. After finishing school in 2012 I quickly became 2/

'housebound and was unable to access the in-person clinics offered by my local NHS CFS/ME Service, but I had been a good scholar and was determined to be a good patient. I attempted to follow the workbook they gave me, find my high-energy activity baseline and increase it by


3/
'find my high-energy activity baseline and increase it by 20% % every fortnight, provided this didn’t bring on symptoms. It didn’t work. Instead, my baseline shrank. I rarely had the energy for telephone CBT with an OT, and it was never helpful. Physical stamina was the wrong
4/

'paradigm, nor was the issue my thoughts or feelings or behaviour. Since then my health has only deteriorated. I am now 26.
'I cannot adequately describe how frightening it is to find at 18 that the only treatment which medical professionals are offering you, the only
5/

'treatment there is, is not working, does not work, and that you are getting worse, not better. How frightening to discover that there are no doctors who can help you, that they do not even know what is wrong with you, and that in looking for effective alternatives you will
6/

'be wandering in a wilderness of quacks and blogs.
'I know of nobody who has benefitted from GET. I know a lot of severely affected people whose decline was precipitated by it. Evidence of harm is mostly anecdotal because large, rigorous studies into its impact have not been
7/
'done.
'I know of nobody who has benefitted from GET. I know a lot of severely affected people whose decline was precipitated by it. Evidence of harm is mostly anecdotal because large, rigorous studies into its impact have not been done. Regardless Regardless of demonstrable
8/

'harm, if the only treatments available are inaccessible or irrelevant to a large proportion of the patient group - it is estimated that 25% are severely affected - then it is not adequate treatment. Biomedical research must be done to understand what is happening to our
9/

'bodies, and to prevent very ill people from getting worse and help us to get better.
'This is not political, it is existential. I have no reputation at stake. I am fighting for my health and for a chance to live. I need physicians to work with me, and not be hamstrung by
10/

'guidance which is actively unhelpful. Persisting with the GET/CBT approach on the grounds that it has an evidence base when that evidence base is fundamentally flawed, will do nothing to improve the situation of severely affected patients, many of whose severity of disease
11/


'has been increased by this treatment.
'Having come so far to recognise the needs of patients, particularly the severely ill, I profoundly hope that NICE will not backtrack at this late stage. My only hope lies in biomedical research, and adequate funding for this requires
12/

'the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.'
She died 3 Oct 2021, in the full knowledge of how and why she was being neglected as she was being killed by this neglect. Inhuman and degrading state sponsored 'healthcare'.
 
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