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

I heard this during the testimony and it might have been that I conflated or confused it with what was being meant by "medicalisation." I took the use of "medicalization" by one clinician to be meaning this thing about irreversible atrophy-ing, but likely I was misunderstanding.

 

It was stated by Dr Roy, I think Dr Warren made the medicalising comment.

 

This will be good in terms of reach. Must admit I’m nervous on their behalf that Madeley is interviewing. He’s such a loose cannon.

 

It seems so plain that it is anything to avoid saying the primary management strategy at the moment is Energy conservation

and that if you don't get that right then it causes the symptoms and deterioration.

and so... CBT for generic sleep stuff, generic ideas of pain, generic ideas of 'fatigue' - all based on generally 'put it out of your mind' and 'here's how to cope' doesn't work and harms. And even if they changed the paradigm so it wasn't wheedling of the same crap that harmed, then it would be 'coping' not 'management strategy'.

Which says it all about the stumbling block being they don't want to allow and say out loud that pwme should have adjustments so that they can not continually get worse, and not struggle through life because 'can't' = 'will cause PEM'. They've already - including the Dr on Matthew Wright's show, who is apparently friendly and gets it - insisted on changing from even saying PEM to 'post exercise/exertion fatigue'. Which isn't good enough. It's like calling diabetes 'sometimes feel tired if you've eaten a lot of sugar'. And suggesting CBT to deal with that 'fatigue' - knowing noone asks what the CBT is. It's become their magic hide the what are you re-educating them with pill. And noone asks does it work.

No wonder the general public are so easily incited, how on earth are they supposed to understand how someone dies from starvation having been given the run-around in hospital when their main symptom is apparently 'they get fatigue when they've exercised'. So the ones who 'care' and are 'trying' are as bad or often the worst because it gives laypersons a compromise that is nowhere near being helpful and is actually just the same old in a different wrapper. BUt with that same old we genuinely care tone.

 

Actually references to medicalisation or over-medicalisation were made by a number of different clinicians in the notes and questions were asked about such remarks. It seemed to have been a theme and had nothing specifically to do with Roy's gut disuse-atrophy argument.

Line sepsis risk was discussed in the context of TPN.

One of the dieticians who had made a comment about over-medicalisation in her communications also spoke generally about patients who present with gastrointestinal issues that are psychological in origin & that giving those patients NGs would be "buying into" their belief that it was a medical issue. Dieticians lack the necessary background to make such determinations so her musings on the matter surprised me somewhat.

 

That BDA doc that was written by dieticians (but I have issues as 2 are from the Leeds hospital and the other is Sue Luscombe, both not apparently being aware that their experience is 'niche' to their context of having psych-related positions and not to be generalised) is discussed further here, link is from the post of the BDA guidelines onwards: The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

and all of this sounds sadly familiar in its certainty on this sort of thing 'being commonly seen' kind of phrasing which I would say is influencing and could well play the 'put doubt in the mind' card.


On that note, we know that most of the 'oldies' ie from old pre-new guideline clinics in positions like psychologists and rehabbers haven't fancied actually updating what they do. So have just focused on the bits that were 'letter' and not 'spirit' in the guidelines.

Did the new guideline even tackle the dieticians or did they assume their advice was without these potentially hidden undertones (from the old guideline, and old set-up) that needed to be shaped up and out? ie so all the 'surrounding stuff' is it still the same stuff that would have been there before, just toned down without GET. Or did they have anything to update/go for updating the feel and spirit understanding of the condition?

Whether some of the advice might have theoretically been similar, I think the stuff that goes into theorising needed to be checked on. And of course shouldn't be delivered in a format that isn't 'getting' what ME is and how it causes different things they might see - it's as much a problem I think if a dietician has the wrong understanding of the reasons for what they might see as anyone else. It's far more than just 'wrapping' particularly if they see themselves as having expertise because noone has made a point of telling them aspects of it might be out of date.

Particularly if their going under the radar inadvertently has left them feeling cocksure as the one profession left being able to say 'over a decade this has worked for', rather than theoretically physio and psych should be binning and apologising for the old stuff as that's the entireity of what they offered.

 

I suspect they will be repeating what the medical team says in multi-disciplinary meetings. I'm sure I made this comment before but the words "medicalisation" and "medicalise" when used by doctors means one thing and one thing only: "legitimising" and providing positive reinforcement that a patient's condition is biological, when the doctor believes it to be psychological.

From good old Reddit today, on POTS —

On a happier note —

I had a conversation with one of our senior surgeons yesterday and touched on Maeve (also Lucy Letby). Neither of us could recall a s/vsME adolescent requiring advanced nutritional support though it's possible they just haven't been referred or had already aged out. He did remark that a similar situation is the (h)EDS / vascular compression cases, some of whom have flown from NZ to Germany for treatment, as reported on in our local media. Also similar are cases where Munchausen/FII might be suspected, but he said "but we will have that conversation with the patient on TPN (his emphasis)". We agreed that MbP/FII was likely heavily over-diagnosed globally and probably very rare, with many cases actually being medical failure.

 

Good Morning Britain

Sarah Boothby on ITV At 13 GP said “let’s not medicalise this”

this is quite a long detailed piece

 

Madeley “a slow motion catastrophe, Dr Shepherd could it be stopped?”

CS - no Co-ordinated plan, could have taken the advice from Dr W Weir, death could have been avoided. PwME shouldn’t be dying of malnutrition”

 

Yep. The MDT concluded it was functional and this explains everything that followed, including the “inexplicable” reluctance to try anything else and extreme statements like TPN will definitely cause sepsis and make your stomach atrophy from misuse. This killed her and they all got away with it.

 

Really good piece on GMB, started just before 7.20am for ten minutes if anyone wants to watch on catch up.

An interesting aside, Sarah Boothby said as a child Maeve was sent to a paediatrician monthly for two years but discharged herself twice, as the session was an hour of “being kind-of lectured about her single-parent background” the number of times I”ve been told this is the reason for my ME! and also that she needed to lower her sights as she was educationally high-achieving.

 

SNTG is right about "medicalisation"; medical students are taught to guard against so reinforcing "psychosomatic" symptoms. (In the past I also heard the term used in another unrelated context: end-of-life care, when interventions can become increasingly burdensome and/or distressing for the patient; I'm not sure if it's still used in that context.)

The dietician clearly had her own opinions & I don't think she was just parroting what was said by others in MDTs. She kept referring to M's "beliefs" about what she was able to tolerate; she believed she should be referred to liaison psychiatry & in an email discussion with Roy/Strain/Shenton/Blackburn she brought up the "over-medicalising" of "a psychological issue". Despite some backtracking she was more open about it than some of the others; it was very revealing.

Conflating glove anaesthesia with POTS - well, you really have to be in the thrall of unevidenced psychosomatic theories to make that comparison.

I'm actually a bit worried about the recent proliferation of vascular compression surgeries (Nutcracker, May-Thurner etc) where patients are travelling to Germany to see one of a very small number of surgeons; it reminds me very much of what happened with CCI. I looked but couldn't find many case reports so difficult to get a handle on the kind of radiological evidence that's being used to justify surgery.

 

I can't help as I'm reading through this, and at the same time enough of these papers that often end up being switch and bait claiming to be about tackling frequent attenders, but end up being a vehicle instead for 'pathwaying out anyone with MUS' (start off claiming to look at frequent attenders, which are a whole list of demographics not including MUS, to then the author suggesting basically people who would be dumped under 'MUS' type conditions are the 'ones that can be tackled) to wonder what part that 'culture' or active initiatives to pathway that might have had.

I also can't help but feeling that a lot of staff might have had training to 'identify' based on fuzzy descriptions of MUS or functional to be put onto 'long term conditions' pathways that are biopsychosocial and been taught to intervene to do so. And that as 'CFS' or 'chronic fatigue' is the flagship of MUS, then without active training to tell people this no longer sits under that pathway even if they've been trained in exactly the symptoms being red flags then all these extra 'helpful' loops start coming in. There is potentially so much that has been taken into the 'general' from the CFS-specific that those 'general' need to be identified and sorted too, along with their impact.

I'm struggling to make this either short or well-brought together, but I can see how initiatives under the guise of 'tackling frequent attenders' actually were actively just training 'MUS - spotting' and culture change to make sure that noone made these things worse.

It's long but I've tried to break it up by gap between each paper, and use bold for the odd point to help with scanning through.

Each time I read through a new one I spot a different pattern or issue. This time one thing I noted was them suggesting targeting different staff groups to operationalise this (one nursing should oversee, one senior docs, one liaison psych, last one just says ED is a good place to capture MUS and as its 2016 seems to be the initial one without the detailed 'how to')

The papers or initiatives often state that their 'aim is to tackle and change culture, and create new pathways [out of the system]' potentially ring slight bells too. I note even today most don't bother to think they need to differentiate 'CFS' from FM or anything else, and even the better ones still think they are pain and fatigue they just use a few different buzzwords. So back in 2021 when there was a lot of backlash on the guideline, and MUS culture (and likely training - which seems to amount to in the case of hospitals in a lot of these documents be: 'they are in the wrong place' - in a lot of places) had been well-embedded.

Particularly when I read that Exeter were implementing a CQUIN in 2017-18 year for this sort of thing (more detail further down), based on the West Middlesex-based research (based on 7 patients fished out in the end). These types of pieces of research often seem to be fishing expeditions in the end rather than proper analyses looking at who the most frequent attenders are and then coming up with solutions for them, but looking through the list of frequent attenders for themes that ally with what they want to offer/their area.

But the last one from 2016 seems a starting point for this as it suggests 45% are MUS and it costs £3Bn a year.


If I point to for example Jo Daniel's 2018 one on chronic pain': 10.1177_2049463717720635.pdf (nih.gov)

Which is where this part on page 9-10 makes me think that these tools, certainly the later boxes - like as well as using Liaison Psychiatry having short screening questionnaires in the ED - might move from being about anything to do with a database of frequent attenders, or 'we've seen this person a few times' to 'preventative for this type who becomes a frequent attender'.

eg under the pathways one:

under staff support:

which to me indicates training people into being confident to tell the person it isn't something bad and 'they just need a confident reassurance it is nothing and doesn't need to be investigated' (by someone senior if necessary), more 'just in case' investigations will apparently just increase their anxiety. In conclusion: "This can potentially result in inaccurately targeted treatments that are ineffective or unnecessary at best, and maintaining the problem at worst."

I can see how this training could be extensive to a lot of staff by the para above.

the screening tools one is to do short surveys on anxiety and depression to inform care plans (and I suspect pathways they get sent on). Of course the issue with the short-form survey, particularly out-of-context of a GP relationship is that for ME/CFS the psych designers refused to calibrate it for an illness they refuse to understand that happens to have increased exhaustion etc so someone saying they are tired for example gets 'misinterpreted' by the questionnaires.

The section discharge plans makes me realise how if misimplemented the impact could be wide-ranging to affect other services now:

All based on a rushed 'whatever you do don't be 'better safe than sorry' as that will encourage them' approach using 'short psych surveys' with a lot of flags in the training suggesting a lot of those in this category will have 'certain kinds of symptoms'.



It is interesting that this one from Jo Daniels seems to at various points suggest this is best implemented by the nursing staff getting involved/overseeing.

Whereas I think the West Middlesex one (that is referenced on the CQUIN doc) : Frequent attendances to a London emergency department: a service improvement project embedding mental health into the team (tandfonline.com) emphasised

Their assessment process was to have an ED doctor undertake a biomedical assessment, then Liaison psych undertake a biopsychosocial assessment and use that to draw up a care plan. if the patient wasn't able to be involved in that it would be shared with them at the earliest point. this was then to be attached to their file to help any other agencies with their decision-making.

In its 'why this matters to us' section at the very start of the paper:

Their key messages (at start of paper in a banner box) included:

But I wonder whether the issue is that potentially this is operating one-way for 'MUS' because of the assumptions associated with it ie if a GP referred to hospital because of something acute to do with the LTC, is said person getting stuck continually in a 'triage the LTC' loop? PLus of course let's not kid ourselves, the people who wrote this were talking about MUS, which was invented as a box primarily to chuck those with CFS deep into. SO the 'headline condition' of these initiatives they'd been trained in to 'save the crisis that was overwhelming hospitals'


This paper seems to be explicitly referenced in the middle of the document of the CQUIN from the college of emergency medicine (not just in the references at the end): Frequent_Attenders_in_the_ED_Aug2017.pdf (rcem.ac.uk) that seems to have been used by Exeter in 2017-18: Royal_Devon_and_Exeter_NHS_Foundation_Trust_Annual_Report_and_Accounts_2017-18.pdf (england.nhs.uk)

THis third paper suggests that it should be senior clinicians this time 'getting involved'

includes the following on page 6:

also mentioned here: https://www.s4me.info/threads/financial-outcome-measure.39312/page-2#post-543110

And the following 'selling the need for tackling MUS' on page 3:

The reference vi which was apparently that UK ED study was that showed 45% MUS, and it's this one from 2016: Designing services for frequent attenders to the emergency department: a characterisation of this population to inform service design - ScienceDirect originally in the Royal College of Physician's journal.

I'm wondering whether this is near the start of where the 'initiative' began for all these papers, given it references MUS costing £3Bn a year. And states ED as the hub to fish them out, and profiles MUS as being 'young people of working age' and lists a number of somatic and functional cliche terms/'symptoms'.


The methods notes "The research was carried out under the auspices of the National Institute for Health Research funded Collaborations for Leadership in Applied Health Research and Care East of England." which I assume means it carried some weight for that.

the study design notes it's a retrospective study of 100 patients' case notes. But uses pretty strong recommending language, which I assume must be due to the funding/backing to do such research.

and (worrying to me as a marketer):

and under 'stage 2' of this, after they noted they reduced the level/bar of number of visits required to be classed as a frequent attender, there is:

a later para labelled 'medically unexplained symptoms' (straight after the 'personas' para) makes a point of noting this can be

they note the gender not being female is unusual but might be due to them focusing not on the most extreme frequent attenders, or not including primary care.

In the Discussion, despite the paper supposed to be about frequent attenders, it glosses over this in the first few lines with mutterings about being heterogenous and 'no one size fits all' until it gets to the following:

And here is the 'let's fish for them' next para:

............

.......

 

A related story

https://www.bbc.co.uk/news/articles/cewl59xyke9o

Woman with paralysed stomach told she was anorexic

 

Now it is after 10am you can just go to catch up which you can fast-forward on

I think Sarah was stellar, and I don't know how she managed it after everything but she came across brilliantly. There was just about enough time to get some important facts/overall picture across which I think had all been carefully handled.

And to be fair between the two presenters of Richard and Trish I got the sense they'd got themselves up to speed before-hand and there was a sense of giving them a good run at it honouring what they needed, rather than it being perhaps the usual cliche interview angles given the short-ish time slot. And you could really sense the love Sarah had for Maeve, and she managed to get across really well who she was as a person, which is important.

It meant the circle felt more squared than it often does with these interviews in getting across how something people might know as 'can be x bad' (tired after exercise) ended up where it did and some tasters of the 'context' going on behind the scenes being 'old hat' ongoing issues and definitely none of that 'debate' nonsense.

 

Now on YouTube.

 

https://www.itv.com/watch/good-morning-britain/2a3211

eta:
I was relieved that Charles didn't go into the ' I caught ME after a dose of chickenpox...' spiel

 

Charles Shepherd talking about “historical” beliefs in hysteria and then psychiatric input. I’d been a bit annoyed because it’s not historical, it’s happening still, right now. But then I thought about it, the next doctor who comes out with BSP stuff, I’ll play daft “that’s all historical, things have changed so much since that was the approach!” and “oh “historically” before bio markers were found that’s what we did, but that was ages ago!”