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

Thank you for the mention.

As I have said in an email to Sarah, "There were many things that were not included as this was intended as a brief first look at the coroner's conclusion. Nothing was deliberately [or accidentally] overlooked."

With respect to the second half of Sarah's post, I don't have enough information to comment.

 

I think the NHS not having any beds for ME, and having no service for Severe and Vs ME is probably a discrimination case.

 

I didn't get the sense there was a lot of truth-finding involved. It seemed more a matter of weighing the evidence before her. I don't know how much room she would have to call in multiple independent expert witnesses to go through the claims.

 

I also meant to mention in the post that we did not discuss the social care side of it.

 

Maeve’s inquest was a whitewash and the coroner betrayed everyone living with ME/CFS

https://www.thecanary.co/opinion/2024/08/12/maeve-boothby-oneill-inquest/


The Canary on Twitter,
"Maeve's inquest was a whitewash and the coroner betrayed everyone living with #MEcfs #MaeveInquest

Deborah Archer has muddied the already murky waters of just how the NHS supports people living with ME even further says @MrTopple"

 

I think it would be useful to have a page to dissect this particular one. Particularly the fact that the part of the article in the darker shaded area is trying to describe 'what is the problem with NHS treatment of ME'.

I' very worried indeed someone has thought the solution to push for is 'a unit for severe' - when I think that is exactly what these people were wanting back around the guidelines to dump everyone into the Leeds psych ward.

I worry people with good intentions are getting walked into a trap. It's silo-ing us off again. And not acknowledging that many could have stayed mild , that the 'bad treatment' put many of those most ill into the situation where their life hung in the balance in the first place. And that bad advice/attitude/approach is still what people want to encourage in every.single.area of our lives even if they are too scared to offer it under the term GET. They won't hear it.

It is really missing the point that we need ongoing care and that we've been treated with a hostile environment for every aspect of our lives, not just 'not treamtnet available' like some other illnesses. We got 'increase your activity and we'll undermine your testimony' approach instead of adjustments to our limitations, when we had an energy-limiting conditions. We were targeted with every aspect we needed undermined actively, including articles and insinuations on personality that meant people's supporters were incited to hate us or treat us inappropriately.

Which some bits are a step forward vs what we often see (symptoms sort of include PEM, and are a lot better than NHS page)
But fails to tackle what I think nearly everyone/thing in the land of ME doesn't do a good job of covering: the spectrum issue vs what is being offered. I think it is hard enough to get people to write the right thing for symptoms, given they want a simple short word count, that then covering how it can deteriorate with over-exertion in particular and how severe it does become. And that is vital here. For that reason it leaves this door open of how do 'tired people' need more than the CBT on offer. And end up with malnutrition.

others are a real issue: the list of treatments is CBT then maybe energy management. This is consistent with how the NHS website words it but is WRONG. I'm sure it is correct as in its what the NHS wants to offer. BUT its bad treatment that isn't even consistent with the guideline. When we are talking about people who get more severe it is totally incorrect and harmful.

CBT this time for sleep and pain apparently - I'm sorry but these were NEVER in the original guideline and I get very worried that with each month that goes by the 'can still offer for the grief' is getting twisted more and more into it being a treatment. ANd I feel like even the charities for ME don't push back on the idea having CBT in there could be harmful and being used for an agenda. It is.

The sleep and pain for ME isn't the same as generic sleep and pain and is connected to PEM. SO even if those CBT types somehow weren't in breach of the 'must not be based on the paradigm of deconditioning and false beliefs' which I highly doubt, deep down it is - scrape to everything they offer and it's nutty how they won't realise most of their treatments are 'pretend it doesn't hurt/isn't there'.

But that STILL the NHS won't hear that sleep issues aren't about hygiene and that if you take people who get PEM from over-exertion which isn't about 'exercise' but too much exertion (can be done too, and much smaller things like noise) vs not enough rest in a time period vs the threshold for that person, THEN you get a situation which will mean being stuck awake, then needing to hyper-sleep and so on. Trying to then 'train someone to sleep normally' when going with that sleep need is the only management strategy/treatment is so dangerous. It is SOOoooooooo dangerous that they STILL want to hammer on as if telling someone to have less naps isn't what won't lead to deterioration that could kill in some.

None of this should be about us decades in being slammed with the prove a negative with no funding whilst we throw tomatoes at you dare. It's not small stuff, its these awful people just finding a new way to make our lives unliveable and get away with putting a hand over our mouth and saying 'don't listen they are mad'.

 

I'm wondering if there is another factor at play here. And indeed it wasn't about the ME, but it did need to take account for the limitations/adjustments that meant need to be understood.

But I think the generic 'functional' and the unwillingness I still see of the NHS to want to bucket anyone with ME/CFS under that effectively has a policy of 'don't medicalise' ie no treatment for anything. They don't realise because they've been given weasel words telling them it's somehow the right thing, but it's basically a fish out and ensure they don't sneak in to access medicine policy to 'watch out for the hypochondriacs'.

There seems to be a strong push, with initiatives relating to 'Frequent attenders' getting a load of funding over the last decades. And the research is seriously dodgy (at best one is based on a case study of 7 in the end, another makes a business case based on 2 people they fished out who had MUS). Financial Outcome Measure

And some of them, instead of stickign to the remit and focusing on those who attended the most, instead using it as an opportunity to focus on 'fishing out those with MUS' ' and yes I suspect this became whether they were frequent attenders or not.

The Jo Daniels paper has a lot of talk about how 'concern or treatment just creates a cycle which makes them worse' etc.

One of them became an active initiative called CQUIN and was based on the case study of 7 example from West Middlesex hospital, and seemed to be being implemented in the 2017-18 year into other hospitals for example.

These seem to involve something which could easily with training effectively become a short-hand policy by which those 'who might be functional' (and made a lot worse by people like Carson and Stone's FND papers saying it is 1 in 10 appts and 'young women, who will have trauma' to go with that phrase ie pointing out certain demographics) to be triaged to CBT courses and seen by liaison psych.

Under the guise that this will save money because one paper claimed that 2 people with MUS being fished out at A&E could save potential costs of £13,300. I've never heard in my life of any person reallly getting properly investigated before this (nevermind it costing that much where they had a few blood tests), so that is of course made up and very theoretical. Many of us got dumped into a CFS diagnosis before even ruling out dangerous things (I could be really cynical and think the instigators of the next policy aren't keen on such things happening now, because then those who did might have a leg to stand on) or even cheap to treat could have transformed our lives issues like testing ferritin. Because the CFS 2007 guidelines really suggested no investigations - not their claim we all 'got properly investigated and had nothing' so we are probably the demographic who had hte least healthcare in general for anything over the last decade.

Anyway, once people get severe enough with ME they can't play catch up on all these missed pathways of investigation, or fight all of this programming people might have had, or advocate for themselves in a system trained to think this way and literally treat in particular MUS (some of the papers start with identifying the frequent attenders are totally different demographics, and that they'd been funded to look at a,b,c,d,e and then actually changes their remit part way through based on mis-using a reference to crowbar in MUS simply because there was literature on that saying 'that's a population we can do something about whether they are FAs or not).

 

Maeve Boothby-O’Neill’s Inquest – Coroner’s conclusions
https://www.meresearch.org.uk/maeve-boothby-oneills-inquest-coroners-conclusions/

 

Financial Outcome Measure

I've found a scary number of papers along these lines from research that seemed to have been funded as 'initiatives' or become initiatives, where lots of the MUS (I think now people think of functional as the new 'MUS') non-evidenced tropes are used and talked about as if in-depth evidence.

The JO Daniels paper here for example is pretty grim when you flick through to the MUS stuff and the tropey claims of 'patients seem anxious, which makes the clinician anxious, so they then think something's wrong and the tests just exacerbate this' bla and lots of 'all that's needed is a confident word / cruel to be kind' type stuff.

Goodness know where she thinks she got her 'knowledge' from here. It seems the whole project was based on her sitting in an A&E and finding 25 suckers (ie it isn't a representative sample because there were issues with who would volunteer being likely to skew things) who'd fill out her survey and agree to be interviewed, and her own notes she has made on that and interviewing a small number of staff members. A business case (of £s saved per individual) is in that one based on 2 individuals with MUS.

She did trawl the database for a top 50 frequent attenders, but those focused on weren't automatically the top of these. It seems this was analysed 'by a psychologist into themes, to find areas of homogenity' ... probably 'what can we fix' rather than 'what was actually the top issue'--> what could we invent to provide support.

 

There would need to be clarity that the unit wasn't treating very severe ME/CFS, but the effects of it. Perhaps one of the few effects where there may be a net benefit from hospital treatment is failure—or risk of failure—of nutrition and hydration.

Approached in good faith (not a given, I know), it could be a real step forward in developing better care for severely ill people. If it were at a centre where there's a history of learning and good practice being funnelled out more widely, all the better.

But it needs to be clear that it isn't about ME, because we don't know how to treat that. All we do know is that it complicates care, and what we have to work out is how best to address nutritional needs without making it worse.

[Minor edits]

 

When I think about the amount of money being spent on people like this that has snowballed over the years.

I mean even if they just switched these people from the unevidenced side to from the better side of psychology (ie trained cognitive psychologists who can see the impact of exhausting people and look at thresholds, organisational psychologists looking at culture) and put them higher up the chain so they were focusing on implementation of training (the staff to behave better and understand it instead of 'therapising' the person hurt by it), awareness, better processes to accommodate eg things like autism, stroke (might struggle to communicate but able to think), dementia, physical disabilities - instead of thinking those people should be siloed off.

And then money left over (because I bet there is a heck of a lot of funding just flowing to these people if you totted their little research and initiative pots and jobs and so on) being spent on actual functional staff that can plug any gaps - be it medical staff or decent adjustment-based OT that isn't focusing on people's conditions 'being disappeared' but environment adjusting.

But some make an industry of making sure their job will always be needed, the therapy that never really fixes the problem (happily sponsored by the people who are the problem so like it that way), where others are confident enough they can focus on fixing the cause of problem in a way others would see as 'managing themselves out' (but there will always be change and something new to fix, plus that is doing real value - and you don't have to scrape around doing dodgy surveys to claim 'impact' because normally it will be very clear indeed).

 

I think this is a really important reference to log somewhere.


It might have been the legal advice input, but the consistencies across testimonies were a bit sinister really: 'unknown cause with physiological and some mind-body bla', 'no specialism' (but also weren't open to it when it came), 'I didn't mean that type of functional, maybe'

You just have to look up the advice before the new guidelines and realise they cut out severe/very severe almost entirely from 'CFS'. I think we are now clear now on the warped thinking dysregulation the BPS CFSers have because they are wanting to chuck the more severe under FND now. The fact that has the term functional at the start does not escape me at all.

I also wonder whether anyone is saying anything yet about prognosis and mortality for that condition. If it is being described as one of those 'sadly sometimes nothing can be done and sad outcomes happen'

Even with a new guideline the thrust of the system seems to want to fish out these people and throw them under the same treatment and whichever name and dept gets them there, it's like a functional trapdoor lever at each stage. Even when one guideline happens to be trying to fill the very gap (knowledge) that is claimed to be the problem behind everyone doing the right thing. ie it seems to keep changing almost so that gap isn't ever filled.

There is just a bit of a horrible feeling there is some between the lines stuff that goes on that sort of says 'you know what these people tend to look like, doesn't matter what term we have for them, we all know and see them'. And people don't realise that 'hole/look' has slowly been expanded over the last decade and more to include more and more types of symptom patterns, that might very well be other conditions (that are treatable) as collateral damage.


But you can't beat the whole system, so even if someone was a junior (or even senior) medic determined and 'getting it', when you are in a chain and you can't follow something from start to finish then even those decisions might be over-ruled and send them to a ward and they end up on another over-ruled by circumstance or other staff following protocol without seeing the patient, or the decision for one thing changed to something else as if it was an error or there is an update at the next stage.

At the very least even if these checking processes don't change anything, it means for someone with ME, nevermind very severe, it's an attrition of their health condition simply to navigate this twenty questions over and over whilst something was actually urgent.

So yes it's designed that it cannot possibly deliver what is needed BUT even if you did, it can't be implemented without risk to reputations and most importantly....

...won't be within the timeframe it can make a difference - unless any institution has a staff member who can basically start-to-end someone down a different path that does work whether deliberate or not the system whichever way you run the programme changing minor criteria (which is what each of the different visits seem to be) can't make the decision in time.

That delay issue is a common tactic used in other things and areas, basically by the time someone gets to the end of it then it isn't of any use anyway. And it being so exhausting to do so anyway few will be in one piece to fight and look good vs the non-exhausted at the end.

It feels like these people have to be fished out and discussed theoretically to such an extent at each stage that whatever the outcome of those discussions it for the patient is all academic. And I think we have to note the difference in discussions of what to do/try of those 'in the NHS' vs those offering things to try from outside is also about back-covering vs outcome.

SO whether the irony of the more urgent it becomes the more those discussions have to be had because someone's foreseeing potential of death and so paperwork being in order becomes even more important? There's no breaking the loop.

But my gosh you can see how many 'outs' it maybe offered 'in time' and that temptation to send them off to the psych direction sits there as an option at each and every stage. And those who've been there seen it, might know it's not morally the right thing but that biomedical path doesn't work (404 error where you never get there, rather than the biomedical treatment not being what is needed). Does anyone report back / is there more distance if someone gets sent off to the psych option and that ends badly? ie do physicians who chose that even hear the outcome?

Which accidental or not looks like nudge theory, when there is only one option you can do in time without it being questioned or undone etc.

And makes me wonder what the real numbers are who might be sitting under 'other diagnoses' who end up with unnecessarily bad outcomes - because noone is really tracking outcomes properly.

It is like a big old black hole theory with the sucking-in effects.

 

A centre of clinical expertise, or a number of clinics that are properly clinician-led and scientific-development (including just mapping our prognoses so we have that data correct) have the freedom eg that was given at the start of covid to try some straightforward approaches and clinically understand the different outcomes etc well that is indeed different.

I'd add in that along your lines it sounds like there need to be centres of regional expertise for the nutrition/gut/gastro side of things for ME (which there seems to be for a few other conditions), again mainly to educate but also can then be 'mobile' and provide training that way to put it and keep it 'on the board' (as an option instead of 'functional' being the hole it slides into) of the current gastro depts.

Particularly if it is understood that then it can be a stage one to roll out that expertise to changing the current clinic format, and making sure that expertise is input into all hospitals - as I don't think people should be expected to travel eg just for feeding where it is a simple procedure.

I worry that you put enough well-intentioned but also trying to fix their own issues people in a room and everyone agrees that sending them off somewhere 'to be cared for/treated' is a good idea, and I think there a such massive risks with that solution. In fact I'd struggle to see how without it being about being a science-led initiative that happens to focus on the very severe and severe first like normal medical clinics but treats all because it then understands the full spectrum and how deterioration works we wouldn't end up with the gravitational pull ending up being that even if put in the right hands initially it becomes someone's rehab/psych centre/another form of 'catch'.

And whilst we can all dream on about a nice little theoretical 'might be OK for them' scenario where there is a lovely cottage hospital/hospice set-up which is quiet and gentle for the most ill to try and recuperate, the risk of a population who've been stigmatised to the point people believe anything about us being put somewhere siloed away from families and other medical facilities, so that unless it is in the most perfect hands as it isn't really oversighted to the same level just seems so, so risky that many/even the best of people under those different circumstances can over time get carried away etc or pressure from other sources or pressured out. And even when you hear about past ones there are some stories of very grateful people but a lot of mixed bag stuff too.

Plus of course there will be limits to what research could be done and how much any other specialty would be educated at all by something siloed off.

EDIT: OK I've come back to this to add a huge caveat. I think we need to be very careful indeed with the con of 'treat the symptoms' too. This will be done at best in a generic way eg 'as if it is chronic pain' and not pain from exertion PEM etc, sleep issues as if it's a child who needs to be taught to go to bed early by being made to get up early and nap less.

It's a classic ambiguous term that has certainly been used on me and boy did they have different things in mind to what I was communicating re: both symptom and treatment.

I bet your bottom dollar the last 'symptom' they'll 'treat' is PEM, even though that is the underlying feature/cause determining the severity. We've a bunch of people who really, really don't want to 'get PEM'. Because it makes the same old off-the-shelf solutions suddenly obviously wrong. You are correct that the irony is that treating pain with some drug that might help the body not be upregulated could then help to 'turn the cycle' from deterioration to rest, along with a real focus on helping people find a better environment and adaptations for their level of severity so they've a fighting chance of not going over their threshold continually.

But I don't think when the NHS hears symptoms currently they get that really we need to be pointing to that above on 'the paradigm' being importantly understood and at the heart of that. Until they do find some real treatments/cures that actually stop PEM.

 

From Sarah Booth by on X re Dr Strain

https://twitter.com/user/status/1822885389301854293



Alice Barrett would have died an identical death under his care had we - the patient carer community - not used an open inquest to persuade BBC to shame RDUH into action.

 

Everyone’s patient but no one’s responsibility
Reflections on the inquest into the death of Maeve Boothby-O’Neill

Karen Hargrave
https://thereforme.substack.com/p/everyones-patient-but-no-ones-responsibility

 

It has long been recognised by some Doctors experienced with treating ME patients that ME patients do not cope well with ‘Standard Medical Care’. This manifests and presents in lots of different ways, from not coping with the medical consultation process ie attending the Doctors Surgery to not even being able to talk to them in VsME. When it comes to actual treatment, whether it be counselling, exercise or drug treatment, standard ‘dosage’ (for want of a better term) is not well tolerated and often has to be worked up to, if possible, even in taking an off the shelf pain killer. If I correctly remember this starting on reduced ‘dosage’ etc of whatever the prescribed/recommended treatment, formed part of the first NICE Guidelines and certainly was the practice of many Doctors we consulted prior to their issue.

ME patients not being able to tolerate ‘Standard Medical Care’ in whatever setting or circumstance, was our lived experience with ME and medical care. We noticed two major points, with regard to my late wife’s medical care for her ME:

1. That not taking notice of her not being able to tolerate ‘standard medical care’ combined with ignoring the consequences for her of the resultant increased symptom severity pushed her into increasingly more severe levels of disability and the development of complete intolerance to the treatment/activity being undertaken (whatever that was) at whatever ‘dosage’ above what her energy/bodily processing levels allowed and

2. Increasing sensitivity to her overall environment with new intolerances occurring at even low levels of exposure ie her ability to tolerate and cope with her overall environment degenerated from that enjoyed previously.

A friend of mine died recently after a battle with cancer. Her liver started failing and stopped coping with the loading of the toxins produced by the chemo therapy she was taking for the cancer. They had to stop the chemotherapy and reduce the loading of toxins as it was hastening the liver failure and hence her earlier death.

Might this tell us something about how to treat ME? Some physical/biological process(es) is not operating properly in the disease ME and if you continue to challenge that process it appears to lead to increased severity of symptoms with the patient becoming increasingly unable to cope with their general environment.

@bobbler is I think right to caution about simply treating symptoms without regard to the major feature of ME which we call PEM and which, for me, encompasses our lived reality of ‘Post Standard Medical Treatment Malaise’ in ME.

There is something very wrong in the way ME patients quickly exhaust their energy and the extended recovery (including clearance of toxins whether as a result of energy expenditure or the bodies physical processing of food/medicines etc.)

Any treatment protocol for ME, even those with regard to providing nutrition, will have to confront this issue. The current NICE Guidelines acknowledge some of these difficulties but do not, I think, fully describe how they pervade every aspect of an ME patients life and biological processes. In my (admittedly very limited) experience these difficulties are massively enlarged in VsME.

I would suggest that the avoidance of provoking PEM in all its many manifestations is probably the most effective current protector in limiting/dramatically slowing more severe forms of the illness from developing in the first place. Patients it appears to me, naturally from their own lived experience with ME revert to this way of being if allowed to.

It was the strategy that helped my wife the most after 5 years of being medically told to just ignore her symptoms, which saw her deteriorate from moderate to severe ME. It very much slowed (but did not completely halt) further development of food and chemical intolerances and deterioration to VsME. It allowed her to fashion a meaningful (if very restricted) life for herself in her best periods with any downturns being minimised.

 

I know two people with rare autoimmune disease who were FND’d for a good half decade and believed the doc.

I can’t remember where but I think I heard second hand or thirdhand that someone who was initially diagnosed with FND had a tumour, but my memory is fuzzy on that so not sure.

 

Thank You for this @bobbler.

You have made numerous vital points.

And I hope more people than me will take them on board.

.

 

From ME Association Facebook:


Good Morning Britain - ITV Wednesday

All being well, Sarah Boothby (mother of Maeve) and I will be talking to Richard Madeley at around 7.20am in the morning

ITV are arriving at my home in the Cotswolds shortly after 6am to set everything up.....

So a very early start!

Dr CS MEA.

 

Both Sean and Sarah had raised Article 2 concerns, so she was responding to that.