I dont know if anyone else has been following the coroner's inquest into the tragic death of Maeve Boothby O'Neill died from complications associated with severe ME. Its been featured a lot in the press recently and the inquest concluded today.
Maeve bravely struggled with ME from age 13, but it worsened after her A' levels. She was so ill she couldnt leave her bed, or sit up to eat and drink. She desperately needed hospital care to allow her to be fed and she pleaded with her GP to help her. In spite of arranging her to be admitted to hospital her GP was astonished when Maeve was discharged.
I think she had several attempted admissions for nasogastric feeding but it appears that the NHS didnt know how to treat her, where to put her, had no access to specialist ME doctors and she basically fell through a huge ME shaped hole. She died aged 27 of malnutrition.
The Guardian had a good article pointing out the flaws in the NHS treatment of ME patients. theguardian.com/society/art...
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I assumed the reporting today was all there was after the evidence gathering part of the inquest but apparently there is another part of it where the coroner discusses "prevention of future deaths" or something like that, and that is going to happen sometime in September.
I wasn't impressed by what I read today. The coroner seemed to think the NHS and the medical staff had done their best, but I think the NHS evidence was all well rehearsed beforehand, was probably written by lawyers so that the Trust was let off the hook, and wasn't a true representation of what they (medical staff) really thought about ME.
I don't think anything about the inquest so far will change anything for those with ME. But at least some people will now realise you can die of it which might mean that patients might be treated better (but I won't hold my breath).
What's worse and I feel bad for saying this, is that my cynical brain suspects that if Maeve's father wasn't a Times Newspaper journalist, then would this extremely sad case have even got the publicity that is has? Or would it just be another case of a preventable death being shrugged off by the NHS?
I agree that her father's position helped to publicise the inquest. There have been other deaths from ME that have gone to inquest but they are generally only known about by other people with ME, or those with an interest in it.
That phrase “the NHS and medical staff had done their best” is the truly shocking nub of the story.
I am sorry that is just not good enough on this occasion (if ever).
If the coroner can’t get their head around what is actually going on in the NHS, what hope is there?
I am very pro the NHS but hell it needs to be brought up to date, lose it’s arrogance and find some bloody compassion.
I have felt that PTSD thing going on in my NHS contact. I remember years ago reading that book “Cancer Ward” about a Russian Hospital and being horrified. Watching the hospital footage in Gaza and Ukraine. I know looking at our hospitals defies this very real fear the NHS is engendering.
Many of us can vouch for how horrible sitting waiting in A&E for hours is. No place to lay your head and you are ill! Finally a quick check and ‘streeted’. I can understand Ms Booth’s desire just to get home and away from these ‘destroyers’.
Hopefully medics, management and the government, really aren’t this lacking in compassion but they are not going about sorting it out very well.
I hope you don't mind relating my own experience of a cold and uncaring profession, but it shows that little has changed in 20 years (I do acknowledge that there are many more examples of good and compassionate care, thankfully).
In 2003, I endured the trauma of seeing my mother being treated appallingly at the hands of medical staff in the last 24 hours of her life, which led to a complaint to the hospital lasting five years and escalation to the then Health Care Commission. The medics closed ranks, though eventually admitted problems with 'systems' and assured me that the issues would be addressed. My Dad and I received an apology of sorts.
When my father suddenly died two years ago as a result of a heart attack following an operation for a broken hip, the experience of being woken at 3am to be informed of his death, the subsequent discussion with hospital staff in their unwelcoming workspace surrounded by computers, and having to say goodbye to Dad in the resus room (I was told he died peacefully but he looked anything but peaceful) is something that will haunt me forever.
What made it worse was the fact that the doctors and nurse showed little compassion towards me, even seemed to be judgemental, and passed over my Dad's belongings stuffed in a plastic bag without any care or dignity whatsoever.
The information given to me about the reasons my Dad died (that the heart attack was due to the effects of the anaesthetic) was different to that given to the coroner (that it was because of his fall). I wanted to dispute it at the time, but we were being held to ransom as the coroner's inquest was delaying the arrangements for the funeral.
More generally, the horrendous Liverpool Pathway used at end of life care for many years has mercifully been stopped. It was one of the most cruel initiatives ever created. However, I'm not convinced the intention behind it has ever ended.
It's a desperately sad case and Maeve's parents have been gracious and composed throughout the inquest. They must be devastated by the conclusion of the coroner, especially given their evidence, which seems to have been sidelined. They remain sanguine and are stating the positive that has emerged from the report, mainly that the coroner was clear in reporting that ME is a physical illness.
Let's hope that this alone will shake those who have perpetuated the myth that it's psychological or psychobiological. The September hearing might draw this out so there might be some call for better training about how to care for those with ME, especially the severely ill, so that they are treated appropriately.
Having followed some of the reporting of the inquest, I'm dumbfounded by the conclusions. The fact that Maeve's father is a prominent journalist would have brought the case to a larger audience so if it helps people to gain more understanding, that's all for the good.
It shouldn't have to be this way though. I remember when my dear Mum was being badly treated in hospital I was advised by my SiL (then director of nursing at a London hospital) to speak directly with the consultant.
I must have come across as reasonably knowledgeable as he asked me if I was in the medical profession. I replied no, I was an editor. From that moment on, Mum's care improved dramatically. And I was given far more respect by the ward staff.
Of course, the consultant didn't know I was a mere copyeditor and likely assumed I was associated with the press. I'm speculating, but it seems the prospect of being exposed in the media was the main motivating factor for change.
it has been heartbreaking to read. Too often the medical ‘professionals’ involved are excused responsibility for outcomes based on performance against “pathways and protocols” rather than being judged on critical thinking and patient safety.
There is another sad story running about a woman who was stabbed to death by her partner the day after she had begged his mental health team to section him. Their reasons for not listening to her make me weep. Day after day, MH Trusts shrug their collective shoulders - ……..
Knowing how my son is sometimes, and how I felt while I wasn't being treated for 19 years after my sub-total thyroidectomy, my feeling is that ME is very much Adrenal related.
Please nightingale could you say more about this or PM me if others aren't interested? I am hypothyroid (Hashi's) and diagnosed with ME but have never looked into anything adrenal related, perhaps it's relevant. Thank you kindly 🙂
I feel that when T4 was not doing it for me, my adrenal glands took over and were beginning to suffer. I began to feel sick, but did not feel like eating. I had just finished a course of Trimethoprim for a UTI and a Doctor well known to this site, said that it had knocked my adrenal glands out and to take Thorne ACE. I did this and very soon felt a lot better. I did tell my NHS Endo what I was doing, although he was against this and said my Adrenal Glands were alright. A year later I was very much better and was able to slowly come off the Thorne ACE. My LD Son has recently broken his ankle and because of medication problems in hospital his blood levels for Type 2 Diabetes have really fallen, so his Hydrocortisone has just had to be raised. For the operation his Hydrocortisone dose was raised to 100 for a few days, but was abruptly dropped back to this normal dose of 20 mg per day. This, I have always been told should be lowered gradually and not abruptly. Hope this explains things a little. His weight before the op was 76 kg and (beginning of April) and 2 months afterwards had fallen to 52 kg. It is now back up to 55 kg and his appetite is beginning to pick up.
Thanks Rapunzel . It will improve much more quickly if we can get him to the private Consultant for the Mastoid that NHS have ignored for about the past 5 years. The broken ankle was, he said, because he overbalanced. Because of the Mastoid, I feel!
There's a lot to unpick but it seems the NHS still believes ME/CFS is a behavioural psychsomatic disorder, rather than a biological illness. Its reported that although NICE has changed their guidelines regarding graded exercise therapy, as at best ineffective and at worst actually harmful there are still GP's and ME clinics prescribing it.
Until doctors recognise its a physical illness and not malingering, attention seeking or hypochondria then there will be more Maeve's.
Yes. I have a referral out for this and was given am app with advice im the meantime... Mostly useless advice. I have only kept the referral in case it helps push me in the right direction for thyroid.
Yeah the NHS is great at totally useless advice, the pain toolkit is another one. " Have you tried not being in pain" ? Or insomnia advice " have you tried going to sleep". Ridiculous.
But then, a ceratin asshat doctor reckoned that most thyroidies suffer from a somatoform disorder. Peculiar that all these conditions are mostly women's issues, what what?
Oh yes, the male GP I now refuse to see ever told me five times to not dismiss "the power of the mind" when he wouldn't even allow me to describe my racing heart and palpitations because according to him no one believed my issues were thyroid related.
It's only taken five months to figure out what it was... Two months of those wasted blaming it on anxiety.
Obsidian off course it should not take that long. However it’s taken me decades and just when I found ‘proof’ myself in what appeared to be an excellent research paper by the very endocrinologist I was to consult he refused to treat me! It was a great consultation, I liked him. He was happy to discuss strategy and then that was it.
Wool pulled over my eyes again. Don’t feel I can trust any of them as far as I can throw them.
Endocrinologists are a strange breed. No confidence even in their own work. They seem to have no idea whatsoever the real impact on patients.
Now that my cardiology issue has been diagnosed I am contemplating whether to have a private endocrinologist appointment as I won't have the further cardio expenses I planned for.... But am really reluctant to pay for it exactly for reasons like you express. I feel like this is an area where I am even more likely to get fobbed off.
Honestly I am seeing the top cardiologist in the country for my ‘condition’ but I am unimpressed. I could rave on but I will bore you to tears. There is a sense that they revel in their ‘fame’ but it makes me entirely uncomfortable. A bit ‘Guruish’. They only see their way forward and will not be thwarted. Unlike endocrinology who’s balls seem to be absent.
I only found out recently that MS used to be called the hysterical disease, now of course there are diagnostic signs of autoimmune attacks on the nervous system.
I'm sure in time and with the right research and funding they'll find ME/ CFS/ Fibro is an organic disease and we can finally put to bed the idea that its somatic. However in the meantime patients suffer.
Heartbreaking. Before I retired (15 years ago) I worked on funding bids with a local ME/CFS group+to do this successfully I needed to research+understand the plethora of issues they dealt with daily, from both the medical profession+the public at large. The ignorance from the medical profession was off the charts, akin to what thyroid patients deal with daily, esp it all being in the head! Basic care for anyone is food+water so why discharge an obviously very sick woman! Mind you, similar issues abounded when I worked on a funding bid with an eating disorder group - medical ignorance abounded! So, it does appear to be necessary to advocate for ourselves or others where our physical and mental health are concerned! When I look back at my childhood GP (lovely Dr Edwards) and even my children's GPs (when they would do home visits or ring to check in them after a childhood illness), there is no longer any comparison regarding care+concern . What a dire situation people find themselves in, with no help+no hope.😭
All you say is true. It’s especially poignant when your need is high. But where else is there to turn to in this country? The NHS and the Sicial Care sector is disappearing up its own j..ksy!
Pretty scary when you are able to advocate (somewhat) for yourself but what about when you are not?
I think one of the most heinous aspects of this case is the general ignorance about the research, tests and treatment of those with ME/CFS.
Dr M, who is associated with ThyroidUK, co-developed tests back in the early 200s that examined mitochondrial/ATP/thyroid/adrenal function together with genetic testing and this was used in an initial trial, resulting in a paper published in 2009:
Yet despite Dr M subsequently using this test on over 1,000 patients, and on the basis of results develop bespoke treatment plans for each patient, the medical profession continued to ignore this scientific approach, which acknowledged and proved the physical nature of the illness.
Worse, Dr M kept being brought before the GMC and eventually hounded out of the NHS. She's been forced to practice privately as a naturopath, but isn't able to prescribe.
Critically, the UK medical profession refused to adopt the test that Dr M developed, claiming it was too expensive to equip the labs. As a result, Dr M had to stop using the test with her patients.
So it's galling to see that in recent years, labs across the world have been developing research into ME/CFS and coming to exactly the same conclusions that Dr M came to nearly three decades ago, thus vindicating her. Yet, it seems that this is being ignored as well.
If only Dr M had been taken seriously all those years ago and her testing adopted, those with ME would have wouldn't have had to endure the perpetual attitude that it's psychosomatic; cases like Maeve's wouldn't happen; and we would have been in a far better position with regard to treating Long Covid and other post-viral conditions.
It seems the UK medical profession has been so hoodwinked by the psychiatric lobby, feting and ennobling its main proponent, that it has held back the progress in research, testing and treatment that has been so desperately needed.
While the medical personnel in Maeve's case have not been deemed negligent, it's hoped that the coroner take a more critical and analytical stance when she reports in September, acknowledging that the medical profession should not have been ignorant of ME/CFS as a physical illness, nor of the papers that have been written about it.
We live in hope.
BTW, I personally have had the ATP testing over the years when it was still available, and through Dr M's interpretation of results, now follow her bespoke treatment protocol, including taking Metavive I and adrenal supplements (as well as a many other supplements). It has been life-changing for me. Though not so good for my bank balance!
I'm aware of the Dr you refer to who always quoted " its mitonchondria not hypochondria". I wonder how many other potential medical breakthroughs have been strangled at birth, because the doctors/ scientists have thought outside the box or haven't followed medical orthodoxy. And have persecuted or hounded out of the NHS.
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