The inquest into the events surrounding the death of Maeve Boothby O’Neill on October 3, 2021 is presently being held at Exeter Coroner’s Court, County Hall, Exeter (from 22 July to 2 August 2024 with the Coroner recording her conclusions on 9th August). In summary and to capture the essence of issues regarding the ‘care’ given to those with severe ME and to Maeve in particular, ME Research UK selects quotes from each day’s proceedings and provides links to newspaper and media reports.
Day 1 – 22 July 2024
I know you’re doing your best for me but I really need help with feeding. I don’t understand why the hospital did not do anything to help me when I went. I am hungry. I want to eat. I have been unable to sit up or chew since March. The only person helping me eat is my mum. I cannot get enough calories from a syringe. Please help me get enough food to live.
Coroner’s Inquest. Letter from Maeve Boothby-O’Neill to a GP
Day 2 – 23 July 2024
Even today there are people who have been through historic medical schools who don’t recognise it [ME] as a disease, ……That’s a travesty this hearing can address and that will be a massive step forward.
Report from Daily Telegraph from Consultant’s evidence
Day 3 – 24 July 2024
It would appear that a considerable proportion of the staff at the RD&E, including some consultants, still hold to the now-outdated understanding that during her last admission, her illness was regarded by some of the RD&E staff as her fault and that her immobility was self-inflicted.
E-mail from Dr Wm Weir to CEO of Royal Devon and Exeter Hospital (RD&E) Sept 2021
There’s a dogma that this condition is psychological and until that dogma is buried it will be very difficult to treat ME patients properly ….. There are still plenty of professionals out there who still adhere to this dogma and that inhibits a true understanding of this condition.
Dr Wm Weir – testimony to Inquest
In the UK the amount of research that is being done into diagnostic tests and treatment for it [ME] is woefully inadequate considering this is a disease affecting at least a quarter of a million people who were young, vibrant and fit, healthy adults and are left with this terrible debilitating disease …… The underlying causes are not well understood, and it is widely believed that it represents a collection of different diseases that all present with the same features.”
All we have to do is walk back 50 years and patients with diseases like multiple sclerosis – before we had a good diagnostic test – were put on gluten-free diets or sent to psychologists or psychiatrists. That disease was also stigmatised and included in the label of chronic fatigue. There are many, many reports that talk about this stigma.Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease. I think that is a travesty, and if this hearing alone can address (that) then that will be a massive step forward for the people who are living with ME today.
Prof David Strain – testimony to Inquest
Day 4 – 25 July 2024
There was no debate whether ME was a real condition …. I am not saying I thought it was a psychiatric problem. I am fully accepting of everyone advising me of what ME is.Evidence by consultant gastroenterologist – testimony to Inquest
Ms Boothby O’Neill’s father, Sean O’Neill, asked Dr Roy: “Do you think the Royal Devon and Exeter Hospital did everything it possibly could to save Maeve’s life?”
Dr Roy replied: “It is very sad, but I hope you get some reassurance that everything that could have been tried was tried.”
Q & A reported by BBC
I do not know what the cause of ME is. Therefore I’m not able to say if it is or is not a physical condition. That isn’t at all the same as saying I believe it isn’t.
Dr Roderick Warren, a consultant at the Royal Devon and Exeter Hospital
Day 5 – 26th July 2024
I said, ‘please stay’. I found it very hard, but I also understood her point of view that she felt hospital is not the right place for her.”
Dr Kashyap Patel, consultant in diabetes and endocrinology
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.
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 housebound and was unable to access the in-person clinics offered by my local NHS CFS/ME Service, but 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 20 per cent every fortnight, provided this didn’t bring on any symptoms. It didn’t work.
Instead, my baseline shrank. I rarely had the energy for telephone CBT [cognitive behavioral therapy] with an OT [occupational therapist], and it was never helpful. Physical stamina was the wrong paradigm, nor was the issue with my thoughts or feelings of 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 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 be wandering in a wilderness of quacks and blogs.
I know of nobody who has benefited 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 of demonstrable harm, if the only treatments available are inaccessible or irrelevant to a large proportion of the patient group – it is estimated that 25 per cent are severely affected – then it is not an adequate treatment.
Biomedical research must be done to understand what is happening to our 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 body and for a chance to live. I need physicians to work with me, and not be hamstrung by guidance which is actively unhelpful.
Persisting with the GET/CBT approach on the grounds that it is evidence base[d] when that evidence base is fundamentally flawed, will do nothing to improve the situation of severely affected patients, any of whose severity of disease 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 [the National Institute for Health and Care Excellence] will not bactrack at this late stage.
My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.Maeve Boothby O’Neill: In her own words – Jan 2021
Coverage of Week 2 of the Inquest can be found here.
Media Coverage
| Pre-Inquest Hearing – Daughter’s death ‘could have been avoided’ | BBC news website 19 December 2023 |
| ‘There’s a culture and attitude that M.E. doesn’t exist’, says father whose daughter died with the disease | Channel 4 news 19 February 2024 |
| NHS treatment for ME patients to be examined | The Telegraph 19 July 2024 |
| Sajid Javid: Labour must deliver on ME as patients suffer without a cure | The Times 19 July 2024 – Paywall |
| ‘Today’ radio programme (time limited access to 18 August 2024) | BBC Radio 4 20 July 2024 |
| NHS has no specialist service for ME sufferers, says grieving father | The Telegraph 20 July 2024 |
| Woman died after begging GP for help – inquest | BBC news website 22 July 2024 |
| Woman who died from ME begged GP for help after hospital ‘did nothing’ | The Telegraph 22 July 2024 |
| ME patient’s GP had ‘never seen anyone so poorly treated’, inquest told | The Times 22 July 2024 – Paywall |
| Devon woman with ME asked GP to help her ‘get enough food to live’, inquest hears | The Guardian 22 July 2024 |
| Inquest begins into the death of 27-year-old who fought ME for years | Channel 4 news 22 July 2024 |
| GP had never seen anyone ‘so poorly treated by NHS’ after woman died of ME, an inquest heard | Daily Mail Online 22 July 2024 |
| Woman with deadly chronic fatigue syndrome died after asking GP for help | Metro 23 July 2024 |
| Woman with ME died after begging GP for help, inquest told | Sky news online 23 July 2024 |
| NHS has no ward equipped to deal with severe ME, inquest told after patient’s death | The Telegraph 23 July 2024 |
| Doctors treating woman who died from debilitating ME ‘did not believe it was a medical problem’, inquest hears | Daily Mail online 23 July 2024 |
| Inquest told of shortage of specialist beds for ME patients | aol (pa media) 23 July 2024 |
| Consultants treating woman who died from debilitating ME blamed her and thought her illness was ‘self-inflicted’, inquest hears | Daily Mail online 24 July 2024 |
| NHS staff treated woman who died from ME ‘as if she was to blame’ | The Telegraph 24 July 2024 |
| Doctors held ‘outdated’ views about ME, inquest into sufferer’s death hears | The Standard 24 July 2024 |
| Inquest of woman unable to chew food told of shortage of specialist beds for ME patients | The Independent 24 July 2024 |
| NHS wards not capable of treating ME patients, expert tells Exeter inquest | The Guardian 24 July 2024 |
| Doctors held ‘outdated’ ME views, inquest hears | BBC news website 24 July 2024 |
| Doctors treating a young woman who died after suffering from debilitating ME for a decade deny hospital medics did not regard it as a physical illness, inquest hears | Daily Mail online 25 July 2024 |
| Doctors treating ME patient relied on nutritionist with no expertise in condition, inquest hears | The Telegraph 25 July 2024 |
| Doctors tried ‘hard’ to treat ME patient – inquest | BBC news website 25 July 2024 |
| ME patient’s consultant tells inquest staff’s unfamiliarity with condition was ‘unfortunate’ | The Guardian 25 July 2024 |
| Doctors did ‘very best’ for young woman suffering with ME, inquest hears | The Standard 25 July 2024 |
| ME victim ‘could not be fed due to infection risk’ | The Times 25 July 2024 – paywall |
| Senior doctor pleaded with a young woman who died from debilitating ME to remain in hospital rather than go home, an inquest heard | Daily Mail 26 July 2024 |
| Doctor asked ME sufferer to remain in hospital, inquest hears | Independent 26 July 2024 |
| Woman who died of ME was ‘frightened no doctors could help’ | The Telegraph 26 July 2024 |
| A horrible way to die … and no doctors can help you – Opinion piece | The Times 26th July 2024 – paywall |
| Maeve Boothby O’Neill’s harrowing case highlights clashing NHS narratives on ME NB Opinion Piece | The Guardian / The Observer 27 July 2024 |
| Trial By Error: Maeve Boothby O’Neill Inquest Highlights Major Systemic Failures at UK’s National Health Service and in Medical Education – NB Opinion Piece | Virology blog 227 July 2024 |
Inquiry Opens | Week 2 Quotes and Media Coverage | Inquiry Ends | Coroner’s Conclusions
