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

https://twitter.com/user/status/1730159586991317275

 

How on earth did an Assistant Coroner in Devon "find" Alastair Miller?

 

Luckily, that choice was ultimately rejected.

 

Phew

 

https://twitter.com/user/status/1730169623528526104

 

Infuriating

 

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

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.

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.)

 

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

 

Brief clip on BBC Radio Devon

https://twitter.com/user/status/1737086490381852902

 

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.

 

https://twitter.com/user/status/1737198803063546159

 

https://twitter.com/user/status/1752100045879386331


ETA
Another pre inquest hearing has been listed since sometime this afternoon: 1-3pm Fri 2 Feb.
My ex-husband asked for all hearings to be held in person.
If you would like to attend online, please ask coroner@devon.gov.uk if this can be made possible. Ref 8057264

 

https://twitter.com/user/status/1753572907379278129


#InquestUpdate very emotional day for me & still processing. I'm sorry I could not (tho understand & accept the reasons why: witness protection) obtain full disclosure of Prof Hemsley's statement prior to the full hearing for child protection. Relieved beyond words that Justice
1

 

https://twitter.com/user/status/1753572909526688199


is working for #pwMe where all other UK institutions have eternally failed. 700,000 #pwME & their families (UK-side) have a glimmer of hope from today. Full hearing 14 days from 22 July.
Ms Deborah Archer & @MoJGovUK - thank you
2 (ends)

 

https://twitter.com/user/status/1753581813035893233


#InquestUpdate my daughter's words in this thread will be included in the evidence distributed to all properly interested persons prior to full inquest. Hearing scheduled 22 July for two full weeks.
#pwME #ME #LongCovid #LongCovidKids #MedTwitter

 

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'.