By David Tuller, DrPH
Heartbreaking. Infuriating. Mind-boggling.
Those three adjectives are as good as any to describe the testimony heard during the first week of the two-week inquest into the death of Maeve Boothby O’Neill, 27, being held in Exeter, a university town in southwest England. Deborah Archer, the no-nonsense assistant coroner who has kept firm control of the proceedings, issued her own succinct summary before the lunch break on Friday. “It has been an emotional and grueling week for everyone,” she said.
Maeve died three years ago after struggling since the age of 13 with what was later diagnosed as myalgic encephalomyelitis, or ME. (Technically, she was diagnosed with chronic fatigue syndrome; I’m not going to get into discussions of the nomenclature here.) She spent years conducting her own research into the illness and trying different treatments, but she experienced a serious decline in early 2021. She passed away that October. (I wrote about Maeve’s life and death in a long piece last year in Codastory.com.)
The inquest being held at the County Hall in Exeter is a fact-finding exercise, not a criminal prosecution. The extensive media reports from The Times, The Telegraph, The Guardian and other news organizations have highlighted many of the most troubling bits of testimony from the health care providers who have been on the stand. Overall, however, the revelations this week point to one irrefutable conclusion: Whatever individual clinicians and consultants and others did or didn’t do, or whatever we wish they had or hadn’t done, this was a massive systemic failure on the part of the country’s National Health Service.
Equal blame goes to the UK’s medical and academic establishments, which have spent decades promoting the discredited view that ME (and CFS, and what is now often referred to as ME/CFS) is a psychiatric or psychological condition that is treatable and even curable with interventions like cognitive behavior therapy or an exercise program. This bogus perspective has been based on the views of a powerful cabal of prominent physicians and investigators who have conducted deeply flawed research; astonishingly, this crap science has been published in the most prestigious journals and accepted as legitimate by every authoritative body and institution in the country. It is a remarkable case of “emperor-has-no-clothes”-ism.
In case anyone is wondering, the five-million-pound PACE trial, whose first results were published in The Lancet in 2011, is at the core of this mess. In conducting and writing this fraudulent piece of crap, the investigators violated core principles of scientific research. In fact, the study has been put to its most effective use by my epidemiology colleagues at the University of California, Berkeley, who have presented it in graduate seminars as a terrific case study of truly awful and anti-scientific research practices. (I wrote a 15,000 expose of the PACE trial in 2015.)
Given the PACE trial’s worldwide impact on the provision of care to patients all over the world, Richard Horton, the physician who remains the Lancet editor, has a lot to answer for. He has steadfastly defended the study, denounced patients who have criticized it, and refuses to clean up his own backyard—even while presenting himself as a champion of good science.
Others who bear enormous responsibility are the lead PACE authors—Peter White and Michael Sharpe, both psychiatrists, and Trudie Chalder, an expert in cognitive behavior therapy. And let’s not forget their longtime colleague and collaborator, psychiatrist Simon Wessely, who pioneered the psychogenic approach to this illness more than three decades ago. These and other medical grandees have rejected legitimate criticisms of their work from leading academics and scientists in many countries, and they have refused to acknowledge any error. If it weren’t for their pernicious and destructive impact on clinical care in this field, we’d likely be in a very different position today. And so might Maeve Boothby O’Neill.
(I spoke with Guardian columnist George Monbiot earlier this year about the history of this research debacle after he published a scathing column about the issue. This historical context is key to understanding what happened in Maeve’s case.)
**********
Starving to death after three hospitalizations
In essence, Maeve starved to death despite three hospitalizations at the Royal Devon and Exeter Hospital, which is run by the Royal Devon University Healthcare NHS Foundation Trust, the local branch of the NHS. Well-aware of her deteriorating situation, she was begging for nutritional support for months—and no one had any fucking idea what to do about it. How could that have happened?
The inquiry is designed to answer that question. When witnesses testify, the coroner asks the first round of questions. After that, she yields to the other interested parties. These include both parents—Sarah Boothby and Sean O’Neill, who divorced when their daughter was little—and the lawyers representing, respectively, the regional NHS trust, the GP practice where Maeve was a patient, and the local government safeguarding teams in social services.
“She did everything she could to survive,” wrote Boothby, in a statement she prepared for the inquest, adding that the NHS “did not respond to the severity of Maeve’s presentation, and failed in its duty of care.” Her daughter’s death, she wrote, was “premature and wholly preventable.”
Boothby’s ex-husband, Sean O’Neill, a journalist at The Times, revealed what had happened to Maeve in a 2022 article. His “creative, courageous” daughter, he wrote, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”
Under questioning, the consultants have all acknowledged that training in ME was not part of their medical education. Most, in fact, had not seen ME patients at all, or if they had they were treating them for something other than the illness itself. Given that, the witnesses have often come across like deer caught in the headlights—clearly concerned about Maeve but also confused and bewildered about what was happening to her while being utterly clueless about how to stop it.
That this was a case of systemic failure is self-evident from the proceedings. I assume–or at least hope–it is apparent to the coroner as well. Overall, Archer has engaged in relatively gentle, albeit direct and persistent, probing of the witnesses. She seems to have carefully reviewed the thousands of pages of documents and knows exactly which items she wants to be read into the public record—either by her or the witnesses themselves.
(The hardest-working person during the proceedings seems to be the assistant who sits at a desk below the coroner’s dais. The desk is stacked with a dozen or so thick blue, red and black binders stuffed with the evidentiary materials. Whenever the coroner, a witness, or one of the questioners mentions a prepared statement, medical notes, or any other document, the assistant flips through the binders to find the correct page, then scurries over to the person testifying to make sure they have it in front of them.)
Some of the revelations have been dramatic and troubling. We learned on the first day of the inquest, for example, that the experience was so distressing and traumatic for Maeve’s GP, Dr Lucy Shenton, that she left medical practice afterwards and still suffers from PTSD so severe she is unable to testify. Dr Shenton was said to have told Maeve’s mum that “she had never seen anyone treated so badly” by the NHS. (Along with the parties involved, Archer drew up a list of questions to send Dr Shenton, with the hope that she will be able to provide written answers this coming week.)
At a later point I will likely address individual testimony in more detail. Some witnesses seemed eager to reinterpret past remarks and present in a more benign light what in retrospect were problematic decisions. But none of that should distract attention from the central point: The medical-academic-industrial complex failed Maeve, and is currently failing many other patients with ME–some of them in dire straits. And the gaping holes that the inquest has already revealed in the tattered patchwork of care must be fixed if such terrible outcomes are to be prevented in the future.
Hail, well met Sir!
Please never stop your fine work to which my wife and I admire so.
Your support for our saintly Willie Wear is endearing, a life-blood to a great man. Thank you!
Yes. You guessed it. We have a daughter bed bound with Very Severe M.E.
I, a Father distraught and impotent on how to help my darling Alice.
I have a plan to raise £2 billion for Research and Incremental Development. But first need a philanthropist, or two, three?
Best wishes,
William
Thank you for this. I think the Inquest asks more questions than it answers. Albeit anyone with ME watching proceedings will find the testimonies of all parties more than familiar, at least in the broader sense.
As a remote viewer it’s easy to form questions which one wishes the Coroner might choose to ask. Obviously the questions a patient might feel are the most pertinent might not be necessarily the ones which the format of an Inquest is entitled to ask. There is a frustration in that. However the Coroner comes across as being across her brief and compassionate.
Thank you for this. We have a daughter with severe m.e. The grief we experience every day is hard to describe. The awe we have of our incredible, amazing young woman is immense.
Thank you for being our voice.
The thought which troubles me, is how many severe sufferers have chosen to end their lives rather than face this level of medical abuse. Maeve chose to refuse IV feeding rather than face another round of hospitalisation.
I and others I know have had to face ignorance, callousness and even open hostility in hospitals and choose not to disclose our ME if we can avoid it.
Thank you so much David! The inquest has been harrowing to watch. The lack of education and updating of doctors’ knowledge is awful. I really hope that the coroner gives a prevention of further death verdict.
What struck me most was the moaning from the doctors about there being no expert to advice, while at the same time they were ignoring Dr William Weir’s critically important advice which included supplementary fluids. These help patients with orthostatic intolerance to sit up, and would hopefully have facilitated easy NG tube feeding from the start – saving her life.
Willy’s advice has been known for a long time and it’s ‘common knowledge’ among patients with ME that we need to use supplementary fluids to counter the lower blood volume which we typically have and which causes orthostatic intolerance – difficulty in being upright. If you think the problems with being upright in OI are minor, imagine trying keep down food while feeling wildly dizzy, greying out on the verge of fainting and experiencing a violent headache. The SALT team and nutritionists trying to argue she could swallow once and could therefore do it repeatedly, and even the doctors seemed to have no grasp of the fact that that is not how ME works. Being able to do something once in an energy limiting condition does not mean you can do it twice or three times or repeatedly in order to eat a meal.
The clinics naively referred to as being where people with ME are treated and therefore who would have been thought to be caring for her in many cases (I don’t know about Exeter specifically) not only have no effective treatments for ME but often don’t even accept patients who are Severe, never mind Very Severe, as they are too ill to attend the clinic and the clinicians don’t bother to do home visits.
Even had she been accepted there as a patient they could do nothing but tell her to pace, as they don’t generally prescribe or do tests. Everything is left in the NICE Guidelines to the GP who as we heard last week is not allowed to supply or fit or maintain NG tube feeding or other assisted nutrition.
Surely the most obvious next step forward is for the clinics to take on board what many of the patients already know and have used for a long time, which is that we need supplementary fluids, they could then supply and monitor success of these and we would have another effective symptom treatment on the NHS for ME and a potential lifesaver. It’s not rocket science.
Why are there no RCTS on this? The doctors were concerned that the use of fluids fell outside their usual way of practicing internal medicine because there was insufficient evidence – because the ‘learned’ journals have normally only published research on ME that supposedly supports the bogus theory it’s a psychiatric condition. They would not have published any papers on this because it does not fit their schema of medical understanding of ME. The circle is complete, there is therefore there is no evidence for the clinics to start providing patients with what we need.
Lastly it’s striking that none of these doctors who are moaning and complaining about lack of medical education in ME ever bothered to do the We don’t just want a decent Prevention of Future Deaths report and then a Public Enquiry, we want justice, compensation, and for the doctors to be held accountable. We also urgently need clarification of where delays to assisted nutrition cross the line into criminal negligence so we as patients, carers, relatives, and hopefully NHS whistleblowers can take action and call the police. I want see justice done here, for not just individual doctors but the NHS to be held accountable, and I want to know there are going to be effective safety nets in place so what happened to Maeve cannot happen to anyone else.
Thank you so much for this. I can add that I do have first hand experience of the Exeter ME/CFS service. (I also have first hand experience of services in Hampshire and Dorset, who are 100 times worse, but that’s a whole other story). I’ve had ME since 1973, severe since 1995. I was 16 at the beginning and a pensioner now; still had no medical treatment and, like so many people with ME, now avoid seeking medical attention because of the gaslighting, abuse and pointlessness of doing so. The Exeter service did see me at my home (in 2018 – I have no idea if they offer this now), but their very lovely OT was only able to offer me advice on pacing (and acknowledged that I couldn’t do less) and a letter to support me in applying for care from the local authority. The Exeter ME/CFS service only had an OT and does not employ a Doctor, so they don’t have any treatments to offer, so if anyone is inferring that there is a clinic “where people with ME are treated”, they are woefully (or maybe I meant wilfully) naïve or ignorant of what’s available.
I suspect the final sentence of the abstract of this 1997 paper may be pertinent when thinking about potential management failures in this case as well as in other cases -https://www.sciencedirect.com/science/article/abs/pii/S0163834397803155?via%3Dihub. (What’s positive about neglecting to act when patients are suffering terribly and/or deteriorating before everyone’s eyes?) Decades ago, it seemed that if NHS patients managed to get past their GP gatekeepers then they were on the home straight to being cared for properly. These days, I sense that things have changed considerably in the UK such that GPs are perhaps more likely now to find themselves battling to try to get secondary care doctors to take notice of their clearly unwell patients and to care for them appropriately. Why might that be, I wonder?
Thank you for never pulling your punches.
I’d love to see an exposé on the Psych Cabal on TV, newspapers etc. it’s time the doors were blown off.
I heard the part where a Dr, without training in M.E, decided Maeve should not see The Gastrology Team. I’m pretty sure this might have saved her life, I have Gastroparesis and a other stomach related issues with my M.E that at times has led to swallowing and eating issues, even hospitalised by it.
The perception of Maeve’s M.E was what led to her death, the blame lies at the heart of BPS Cabal, the fact that these people still work treating M.E, are involved so deep in Royal Colleges, Insurance Companies and Government… The stranglehold they have on M.E is a threat to all M.E patients.
We need rapid change, we need the Cabal ousted from M.E, we want safe medical environments and treatment protocol.
Thanks immensely for attending in person David
You are doing something for humanity Maeve, maybe not in quite the way you envisaged. You write so well
I’d say that the scandal goes way beyond ME. I think ME needs to be seen as the prototype/linchpin/keystone/exemplar for the wider MUS/functional belief-system/project/strategy that seeks to save lots of money by cutting investigations, consultations/appointments and length of inpatient stay for patients who are branded as having unexplained or so-called ‘functional’ symptoms. With doctors being taught that around half of outpatient referrals have MUS, that could make it a very big scandal indeed. I’m afraid that medicine has been led up the garden path on this. If doors are to be blown off, I’d like to see the whole lot blasted to smithereens so that ME patients can’t be simply relabeled with something else and stuck behind some other door to suffer neglect in much the same way.
This paper by Dr Malcolm Hooper covers both the medical and the political aspects of ME very well:
‘Magical Medicine: How to make a Disease Disappear’
https://www.investinme.org/Documents/Library/magical-medicine.pdf
Since someone on the s4me website (of which I’m not a member) mentioned non-cardiac chest pain (NCCP) in a comment (-https://www.s4me.info/threads/maeve-boothby-oneill-articles-about-her-life-death-and-inquest.31707/page-31#post-545508) on a thread about this case, I’d just like to juxtapose this from 2021 -https://www.sciencedirect.com/science/article/pii/S1470211824033694 – where the authors seem to conflate NCCP with cardiac syndrome X with this -https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/all-about-microvascular-angina and this (dated 2017) -https://www.bhf.org.uk/informationsupport/publications/heart-conditions/medical-information-sheets/microvascular-angina – where cardiac syndrome X appears to be synonymized with microvascular angina. (Fortunately), it wasn’t just me who picked up on this issue -https://www.sciencedirect.com/science/article/pii/S1470211824033591?via%3Dihub .
What does any of this have to do with ME? I think they’re very much linked by Table 1 on page 6 of the JCPMH’s ‘Guidance for Commissioners of Services for People with Medically Unexplained Symptoms’ (available to view here -https://www.slideshare.net/slideshow/guidance-for-commissioners-of-services-for-people-with-medically-unexplained-symptoms/71912851 ). It appears that serious biomedical conditions have been cast as functional somatic syndromes in a guidance document targeted at NHS commissioners that stresses the cost of MUS to the NHS; (this paper is relevant too -https://bjgp.org/content/67/656/106). Apart from NCCP and ME/CFS, the symptoms of painful periods, painful sex and pelvic pain – the very symptoms of endometriosis – are listed as the ‘functional’ syndrome of “Chronic Pelvic Pain”. It’s of little surprise to me then that so many women’s symptoms of endometriosis have been ignored, that they’ve been gaslit too (-https://www.mmu.ac.uk/news-and-events/news/story/endometriosis-patients-being-failed-and-feel-dismissed-new-study-shows#:~:text=Endometriosis%20patients%20being%20failed%20and%20feel%20dismissed%2C%20new%20study%20shows,-By%20Rachel%20Toal&text=Research%20reveals%20women%27s%20experiences%20of,comes%20to%20accessing%20healthcare%20support). All this needs exposing by the media. NCCP, ME/CFS and endometriosis all fall under the MUS umbrella, not in patients’ minds of course – they likely have little or no idea that they’re politically connected – but in doctors’ minds since they’ve been fed this ‘functional’ dogma. Too many women have suffered; too many patients in general have suffered. I understand that Maeve was a feminist so I suspect that she’d have approved of me raising this here and would likely have got why it’s so important. I’m not seeking to minimize or deflect in any way from this horrendous case, (and the ‘f’ word – and I don’t mean ‘functional’ – can most certainly be forgiven here). Rather I think it’s important that people appreciate how it’s part of a much wider/systemic problem now in medicine that has the potential to impact/is impacting vast numbers of patients.
There are many shocking true stories I could relate about different cases known to me personally where a range of biomedical problems were dismissed as MUS/functional/mental health issues. Currently though, my main concern is for people I know who have diagnoses of ME/CFS. (I’m not a member of any ME group/forum because I don’t have ME myself.) Of course, that could change at any moment because so many patients are being dismissed as having MUS/functional disorders for all kinds of medical problems. I suspect it’s only a matter of time before someone I know and care about is, with or without their knowledge, branded with a functional label for a non-ME problem and neglected or abused by the medical system too.
Thank you once again for fighting for the truth, if only the medical profession would listen to the thousands of sufferers. I for one do not go near Dr’s anymore regarding my M.E as they are not interested as they cannot cure or treat us. So I stay at home suffering as they are only interested in one problem at a time. M.E of course comes with many health issues.
My heart goes out to Meave’s courageous family fighting on not just for justice for Maeve but for all of us. Thank Dr Weir and thank you David, you are legends! Only a miniscule amount is spent on Biomedical Research into M.E
Every mention of Simon Wessely revives the same anguished questions: Why has this one man for decades held so much power over the lives of millions? Who appointed him to be lord and king over us? And why has it proved so difficult to topple him from his throne?
It’s worth mentioning that the PACE trail was funded, in part, by the Department of Work and Pensions, following their consultations with private insurance companies.
Wtf? Why is the DWP funding medical research? It can only be in order to find better ways to “gaslight” ME sufferers by telling them their symptoms aren’t really real and they could go back to work if they tried – exactly the same way insurance companies will go, ok, you’ve had your 6 sessions of CBT, you’re well now, off you go.
It is scandalous that there wasn’t an outcry over their motives at the time.
(PS This isn’t conspiracy theoriies, it’s all well documented, it’s just that no one at the time seemed to care).
A Google search produces a mountain of contemporary clinical information about ME, it’s central symptoms and management. Freely available to all. How on earth is this 50 year old argument about whether it’s a “real” or psychiatric illness still the place where medical staff begin? Or even the 20 year old GET/CBT debate? It’s shameful, embarrassing ancient history. Yet, in 2024, ask any ME patient, and they will say the thing they fear most is not their life wrecking disease (which is physically harrowing and decades long by the way), not pain or relentless daily physical suffering or death. No, the thing that terrifies them is the prospect that they might need to seek hospital care (for ME or another medical problem) in a system where they don’t disclose their primary diagnosis OUT OF FEAR. The stigma, ignorance, and lack of education is what kills and so many ME patients end their lives rather than go to hospital, based on their own, and their community’s, EXPERIENCE. It’s devastatingly sad that ME patients notoriously have huge spiritual life forces that desperately want to continue living, even in a body that is completely ravaged and suffering what others would argue is an unliveable life. But that death so often stems from the medical neglect, stigma or incompetence that haunts this terrible disease is utterly utterly devastating. Palliative care for ME patients MUST be developed. The medical information that is ALREADY THERE must be read and acted upon. ENOUGH IS ENOUGH
Anna Kerr commented:
“How on earth is this 50 year old argument about whether it’s a “real” or psychiatric illness still the place where medical staff begin?”
Perhaps because they’ve been taught to believe that when anything is currently not readily medically explainable it must be psychiatric or behavioral or confected/feigning/malingering? The second quotation in italics in this 2017 paper -https://bmjopen.bmj.com/content/7/4/e014720 – by a foundation level training programme director should have served as a warning.
And maybe because they are not scientists? True scientists appreciate what they don’t know; they don’t seek to fill the gaps in their knowledge with belief and don’t mistake unproven hypotheses for truth.
And it probably doesn’t help if doctors have also been taught to resent their patients -https://bjgplife.com/unlearning-resentment/ .
Heartbreaking indeed. Mark Harper wonders how many people with ME/CFS choose to end their own lives. As a woman living with this illness since 1996, I can reply…..too many. In Facebook support groups we lose people far too often. But we understand because this illness steals everything from relationships, from careers and family to basic choices of what to eat. It is beyond cruel. To then be treated as if it is of your own making, or as a malingerer is a type of torture. Yet most of us can describe at least one traumatic incident of a doctor’s disbelief.
As a result many of us are patient experts with a broad knowledge of topics such as how brain inflammation works, the MTHR gene, oxylates and the lining of the gut. Are many doctors interested in patient led discussion? You know the answer to that one.
So sad to read all these sad and angry stories. Our son died with MEin 2020. Technically he took his own life, but the cause was 7 years of ME, mostly severe/very severe. At his inquest I asked that records be kept where suicide was linked to a diagnosis of ME. His experience had many parallels with Maeve’s , but he was also fortunate, I now know. How many more thousands of families will have to suffer this before there is real change?,
This Inquiry has been an eye opener for me! Not that I didn’t know it all already but that this is still going on and on and on!! It brought to my attention that a woman I supported quite a number of years ago, and has ‘somehow survived’, trapped in her bed, unable to move apart from her head, just a little, and one arm and hand. She could have been another Maeve and I could have been at an Inquest answering similar questions! The Team ‘caring’ for her was led by a Social Worker, who didn’t understand ME and didn’t want to understand it. There she was, stuck in her hospital bed, with two Carers several times a day to hoist her but her partner refusing to allow them to give her liquid food, so that she could ‘eat’. The Speech Therapist who visited her, understood ME and empathised with her was stopped, as she was apparently encourage her ‘false illness belief’. The Social Worker recommended that she could join a course at the local college. Really? She couldn’t even get out of bed, let alone sit up or take part in a class!! Eventually after attending many reviews with him on her behalf, I lost my patience with him. I expressed my views of him in front of the woman, who afterwards said, “I didn’t know you had it in you!” In desperation she later managed to arrange to leave Wales to return to England, with the hope of a more understanding set of people. You must be joking! She is still alive, existing, tube fed, still struggling, still calling out for help, through her hand that still works, to tell the world of her extremely sad situation, her non-life!
thankyou for your efforts, what most don’t realise is this has been going on since the 1950’s, so sad.
karajanesings.com
Lies
I saw the headline, oh God, it’s about time,
ten years too late, still my breath abates,
the thrill of the chase, caught up in the race,
they finally face, the egg on their face.
So many lies, so many lives.
So many lies, so many lives.
A long long way to go, the waiting just a show,
we’ve waited for so long,
we’ve anguished oh so strong.
You’ve had enough time, there’s no reason, there’s no rhyme,
we’ve waited for a cure, whilst you’ve hid behind the law,
I’d love to see your face, even God would lack the grace,
all his children you’ve sent home, whilst you’re rolling in the gold.
So many lies, so many lives,
so many lies, so many lives,
so many lies, so many lives. (repeat)
This whole thing is just utterly atrocious. Thank you for reporting on it.
I once stumbled into a medical forum on Reddit for doctors discussing patients with MECFS and it was vicious and horrifying. The mockery and refusal to read scientific research shared by others trying to dispel some of these ideas. They were so contemptuous.
Thanks David. For those of us who have had M.E. for decades it’s like watching torture. Listening to all the doctors, social workers, etc etc repeat the same mantra of ‘it’s not my field’..and cleverly manipulating answers that will keep them away from any sense of responsibility shows that they still don’t get it. Still the same old attitude of defending a system that fails every one of us over and over again and no ownership of the institutional prejudice and discrimination and cruelty that this system creates. Even though a young woman died when she clearly could and should have lived. Even though they must now be aware that there are literally hundreds of thousands of us permanently excluded from any care because of the egos of some wrong-minded powerful people who call all the shots. Yet still ..no understanding that they are the enablers of this toxic abusive system. I’m waiting for anyone to sincerely say that they got it wrong and that they are sorry. I won’t hold my breath.
Further to EROSEN’s comment about giving fluids and learning/researching in clinic, I don’t see why not, based on precedent: .
I was “treated” in the CFS management clinics based on PACE trial interventions BEFORE it was published. Therefore there was no need for evidence apparently, before rolling out clinics across the country. I’m not sure what the NICE guidelines were back then, but I suspect there weren’t any (2006/7)?
It’s interesting that they have no concept of potential harm from these behavioural therapies (even through inaction on physical health, never mind PEM and psychology harm) but won’t try simple cheap but invasive interventions even to study them. It’s a double standard.
❤💙🙏💙❤