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

Robert 1973 said:
Long Thread by Binita Kane on Xitter:


Full transcript of BK’s thread:

For anyone interested in the pathophysiology of MECFS there’s a nice infographic here from this review article; https://jci.org/articles/view/150377 LOTS more research needs to be done of course. In clinical practice the vascular dysregulation is something I very much recognise​

Some of my bedbound patients have a raised blood lactate at rest, indicating that simply the energy required to stay alive has switched them into anaerobic respiration and oxygen consumption is outstripping supply 2/​

In less severe patients my colleague and friend @robinthephysio is finding reduced lactate thresholds, with patients switching from ‘green’ (aerobic) to ‘red’ (anaerobic) at low effort and heart rate levels - a key cause of PEM/PESE the cornerstone symptoms of ME 3/​

The root causes of this still need to be determined - immune dysfunction, mitochondrial dysfunction, endothelial inflammation, coagulation abnormalities, chronic infection or a combination. We need investment into the biomedical research 4/​

Challenges are that ME as a disease does not have a ‘home’ within a medical specialty as it affects all organs. Therefore there is no training of specialists, no academic research programmes and therefore very few grant funding applications being written 5/​

This requires the government and NHSE to start at ‘ground zero’, understandably it’s hard to know where to start with the scale of the problem and lack of specialists. We first need to get the right people in the room and have the right conversations 6/​

We start by doing ‘something’ not ‘nothing’ - as outlined in our letter the The Secretary of State, an immediate step is to create a commissioned clinical task force who can pull together treatment standards and guidelines (there are treatments!) 7/​

This would act as a group that could be consulted for advice if a severe patient ends up in a hospital with no internal specialists, or to support GPs to liaise with local hospital services. Once there are standards, organisations can be held to account for delivering them 8/​

We need CHC funding to extend to 24hour care for severely affected patients with ME. We need to create bespoke training for people caring for patients with severe ME. Technology could be used to support patients who are bedbound to monitor/communicate with their oversight team 9/​

We need to train a new generation of doctors to become ME specialists. Eventually aiming to have a specialist oversight and treatment team in each region 10/​

As all of this unfolds, we set up a national registry and start collecting data from across the country. This lends itself to real world treatment trials and fast-tracking translational bench to bedside’ research and giving patients access to drugs which might help them 11/​

I do hope Wes Streeting will meet with the #There4ME team. We need to political will and support to make this happen. A MASSIVE thanks to everyone who has supported the campaign so far and to @KarenLHargrave @GoreLloyd and @oonagh_cousins for their tireless work. END/
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Thread on the 2021 Fluge, Mella pathomechanisms paper she cites: https://www.s4me.info/threads/patho...drome-me-cfs-2021-fluge-mella-tronstad.21485/

Edit: this is also being discussed in the Maeve Inquest thread: https://www.s4me.info/threads/maeve...e-death-and-inquest.31707/page-86#post-556308
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her full twitter statement is more helpful Ithink
 
It's a difficult one as people need some kind of hook to bypass the whole 'fatigue' 'tiredness' issue, this why Binita's explanation worked. It might of been better talking in a more general way about mitochondrial dysfunction or problems with the energy production system. Instead of linking it to microclot theory.

The issue with ME is that there just isn't the scale of the trials or research needed to say anything for definite.

The paper link is a hypothesis paper, it might well be right but it isn't proved or at scale.

With lactate, it's like many thinks with ME it's relevant to some and not to others. It's not a universal enough finding. Lactate has tried to be used as an outcome measures in some trials and its failed as for some it just stays normal.

But as long as she continues triple therapy for paeds she will isolate herself from the medical community even within the Long Covid and ME community. That's the crunch. And again with blood thinners, it helps some anecdotally (but always difficult to know without large trials) to varying degrees and others not a jot.
 
Hutan said:
Yes, I agree. Dr Kane speaks very well, she manages to come across as both likeable and authoritative. But yes, she, and by extension we, are very vulnerable to how Kane's use of an unevidenced potentially harmful treatment on children is seen.

I hope Dr Kane will have the insight to see this, and step back from public engagements, if only to avoid putting a target on her back. And that people who are advocating for people with ME/CFS don't put her forward.
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There is a huge difference between making speculative claims about biological mechanisms that need to be proven right or wrong through credible research following up on possible leads, vs making assertive claims based on speculative narratives that are debunked and depend on conditions that are obviously wrong.

In a just world or in a normal setting, this would matter. The psychosomatic speculative fiction would be on more shaky grounds and face much harsher scrutiny than hypotheses that are being researched but have yet to be disproven.

But we are not in a just world, and the context is basically insane and turns most normal things upside down. This is the hard lesson to learn. It's not about competing hypotheses, it's about hypotheses vs a bunch of obviously false fiction that has been accepted as true. It's more of a religion vs science kind of thing than shaky science vs unproven science.

Over the pandemic we have seen so much speculation from top authorities that is far shakier than all of the statements made about ME put together. Most of which turned out to be wrong, with absolutely zero impact on the credibility of those who said it. Even the much-vaunted hybrid immunity is now being confirmed as the bunch of nonsense it always was, but it will take years for this to be acknowledged, and even though it was, and still is, confidently asserted as a fact, far worse than speculating over scientific hypotheses, no one will suffer reputational damage for it. Not a single person.

What needs to be understood, including by the experts who are involved with motivation and good intentions, is just how insane and removed from all norms this issue is. Which is difficult to accept because it essentially means that the medical profession is, at times, pretty much batshit insane and prone to the wildest speculative ideological nonsense assertions where, once debunked, absolutely nothing happens to those responsible even if the consequences are literally millions of deaths, millions more disabled and trillions in economic losses.

Whereas a single misplaced speculation can, and has, essentially set back the whole issue of ME for decades. Which all looks quite similar to PEM from a big picture perspective: a completely disproportionate negative impact from a minor slight. Which is very meta. But then maybe that can help present the issue to them: they can make stuff up that is 100% wrong, even debunked, and repeat it from hundreds of platforms and push for them in their job to horrible consequences without facing even minor scrutiny, we and you cannot even misspeak a single word out of place.

It's as big a difference as the king speaking vs a peasant accused of lèse-majesté facing trial before the king. If you're going to shoot at the king, you better not miss. The king can drunkenly take shots at you until he's bored of it, then have someone keep on doing it until you are never heard from again. Completely different standards.
 
The other thing I thought of is: how were the lactate measurements performed & are the samples from bedbound patients being processed within the recommended handling time? Sample stability is going to be an issue with lactate; these days I think there are portable lactate analysers although I've no idea how accurate they are. In any event if she thinks she has something it needs to be written up as a case series, not mentioned in an off-hand way on Twitter.

The idea of "fast-tracking translational bench to bedside’ research" - I'm sceptical, given the low standards of much of the research in this field. And the idea of a clinical task force "who can pull together treatment standards" - not sure quite what she means here if you lower standards to the point at which you're going to accept, say, fludrocortisone, you open the door for CBT & exercise programmes as well.

The idea of a group of clinicians who could provide advice on the care of severe & very severe pwME who end up in hospital either for feeding-related problems or for something else entirely & the idea of a patient registry are reasonable ones that have been floated before.
 
V.R.T. said:
Perhaps, but I take serious issue with you saying that it is 'fair' for patients to be ignored for using the wrong name. I'm not really interested in a discussion of the etiology as I broadly agree with you, I just don't think patients should be punished for not perfectly navigating the mess medicine has made of this disease.
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I think the term ME has evolved to mean something other than the original use and that's OK. I suspect the majority doctors are not aufait with the original distinction anymore, however technically correct it is to longstanding experts. Language does evolve through usage and it should be fine for a patient to use the first half of ME/CFS to avoid a term that is offensive and denigrating.
Doctors understand perfectly well what is meant and are either sympathetic or doggedly in the BPS camp. I find it hard to believe the letters or label a patient uses makes any difference to their pre existing beliefs and shame on them if it does.
 
Jonathan Edwards said:
SEID was a nice idea but for me suffers from using 'systemic', which means nothing useful, and 'disease', which generates a confusion between cause and effect. When we have some understanding of a cause we can call it a disease. Until then we have an effect - a syndrome.
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I know that medicine works differently, but I think that the common definition of a word is a perfectly fine application of it in most contexts. Systemic has a meaning and it applies very well here:
Systemic describes what relates to or affects an entire system.
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As opposed to locally or part of. But of course medicine is special and uses words differently, to massive confusion I might add. I guess the buzzword in health care these days would be holistic, but of course it also means a different thing now because it basically means woowoo.

We face the same issue in the computer industry. There are common words that in context have a different meaning. But we are not god emperors who expect the general public, far more numerous than us, to comply with our expert terminology, instead we allow for the possibility that a slight change of labels happens when talking between professionals vs when laypeople are involved and never make a big deal of it. Or anyway the people who make a big deal of it only work with computers and rarely face laypeople.

I get that medicine doesn't work like that. And they're wrong. But they do work like that so we have to sort of twist around this snowflakiness in ways that basically make everything worse and everyone hates it but that's the way it's always been done.

God damn this is annoying and counterproductive though. Preferring worse outcomes just because that's the way it has to be. Which it doesn't have, it's just what some people choose to do for the lower good.
 
EzzieD said:
I've heard of people getting ME after an anti-virus vaccine, which may make sense as vaccines can sometimes give people the symptoms of the virus they've been inoculated against? (And, in the 1950s, some patients got polio from a rogue batch of polio vaccine in which the virus had not been killed.) However, the idea that MORE patients get ME from a vaccine than from a viral infection, is not something I've ever come across. Would it be possible to find out who this survey was conducted by, and a link?
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It was a survey I saw somewhere last week. Sadly my brain is so useless, I can't remember where. I will probably remember in about a weeks time, in the middle of the night!
 
Kiristar said:
Doctors understand perfectly well what is meant
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I agree that a patient is entitled to tell a doctor they have ME if they prefer. My concern is in use of the term in advocacy in bidding for support, and largely just because I think it is going to mean you get none - regardless of the justification.

But I don't think doctors will necessarily understand, because people mean very different things by ME. If a patient told me they had ME I would have to ask what they meant by that and who told them they did. If they told me they had ME/CFS I wouldn't need to ask what it meant but still might want to know who had provided it. If I had ME/CFS I would think it very risky to tell a doctor I had ME - and I wouldn't even know what it was I was hoping to convey.

Amongst the doctors, scientists and patients I listen to (or read) I come across all these different meanings for ME right now:

1. A rare neurological disease that can cause brain inflammation and paralysis (there are several physicians and researchers who believe this).
2. A disease of impaired energy production.
3. A codename doctors give hypochondriac patients to keep them happy.
4. A specific syndrome with PEM, as in ME/CFS.
and all sorts of other variants .

Some studies suggest that about four out of five people told they have ME, or indeed ME/CFS maybe, don't have number 4. So actually a doctor assessing someone really has to do their own assessment unless they know who gave the diagnosis and know it means 3.

And in the context of a bid for resources, much the same question arises for someone like me looking at plans. I want resources for people with 4. I don't want resources to be diverted into activities based on speculative theories, whether they be of neuroinflammation, lack of oxygen or psychology, unless of course they involve good quality science and trials. If I see a bid for resources for ME/CFS I know that I am dealing with people who are familiar with the complex clinical problem of long term disability. If I see a bid for resources for ME I wonder if the people bidding really have much familiarity with the problem - which ME do they mean?
 
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I asked my (helpful) GP to change my notes to say that I have ME/CFS instead of CFS. She said the only options on her system were CFS or ME, so she changed it to ME. I was surprised ME/CFS wasn’t an option.

I think ME/CFS is the least bad option at the moment but I don’t feel strongly about it. I just look forward to the day when we know enough about the pathologies so we can come up with some useful names.
 
Jonathan Edwards said:
I agree that a patient is entitled to tell a doctor they have ME if they prefer. My concern is in use of the term in advocacy in bidding for support, and largely just because I think it is going to mean you get none - regardless of the justification.

But I don't think doctors will necessarily understand, because people mean very different things by ME. If a patient told me they had ME I would have to ask what they meant by that and who told them they did. If they told me they had ME/CFS I wouldn't need to ask what it meant but still might want to know who had provided it. If I had ME/CFS I would think it very risky to tell a doctor I had ME - and I wouldn't even know what it was I was hoping to convey.

Amongst the doctors, scientists and patients I listen to (or read) I come across all these different meanings for ME right now:

1. A rare neurological disease that can cause brain inflammation and paralysis (there are several physicians and researchers who believe this).
2. A disease of impaired energy production.
3. A codename doctors give hypochondriac patients to keep them happy.
4. A specific syndrome with PEM, as in ME/CFS.
and all sorts of other variants .

Some studies suggest that about four out of five people told they have ME, or indeed ME/CFS maybe, don't have number 3. So actually a doctor assessing someone really has to do their own assessment unless they know who gave the diagnosis and know it means 3.

And in the context of a bid for resources, much the same question arises for someone like me looking at plans. I want resources for people with 3. I don't want resources to be diverted into activities based on speculative theories, whether they be of neuroinflammation, lack of oxygen or psychology, unless of course they involve good quality science and trials. If I see a bid for resources for ME/CFS I know that I am dealing with people who are familiar with the complex clinical problem of long term disability. If I see a bid for resources for ME I wonder if the people bidding really have much familiarity with the problem - which ME do they mean?
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For 4.?
 
Jonathan Edwards said:
I am not sure if we are at cross purpose here John.

The original term ME had nothing to do with what we now call ME or ME/CFS. It was intended to describe the acute supposedly neurological illness. Ramsay then confused things by describing the aftermath as chronic ME, but ME itself was the trigger illness, neither post-viral fatigue nor M/CFS. As far as I can see charities picked up the ME name for the chronic illness because some physicians continued to confuse it with the acute neurological illness and continued to use the name.
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I hadn't realized that Ramsay was saying it was the trigger illness.

Words shift in meaning. Ramsay did also recognize the post-infection illness and, as you say, described this as chronic ME. If people, including the charities, then used this as the paradigm for post-infectious illness and adopted 'ME' to describe this model and the chronic illness, that seems understandable to me

I think the notion of a single infectious ME is now very fringe, and I'd be surprised if 'ME' is understood in that way.

And I think my other points stand: the charities won't change, patients generally won't adopt it and the current compromise seems to work.

Opening up the question of the name can lead us all down a rabbit hole. I think it best to accept the current imperfect but functioning compromise and move on.
 
I imagine that many people when saying "M. E." are simply further abbreviating "M. E. C. F. S."

Nobody says "N. A. S. A." they say "nassah".
Nobody says "S. I. D. S." (sudden infant death syndrome) they say "sidds".

If the letters in ME/CFS were more favourable, people would use whatever the equivalent of "meckfuss" might be.
 
JohnTheJack said:
I hadn't realized that Ramsay was saying it was the trigger illness.
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I think it is complicated because it wasn't Ramsay who coined the ME term.
Where I think the confusion pivots is that although Ramsay recognised the chronic illness he seems to have assumed that it was the extended clinical pattern of a unique initial illness - which somebody else called ME.

The problem is that the charities, at least to an extent, adopted Ramsay's position that ME/CFS was a specifically neurological disease with maybe 'encephalopathy' if not encephalitis. Otherwise they could have called themselves PVFSAssociation or Action for PVFS.

I think charities might change. MEA may disappear when Charles retires from it. AFME has shown flexibility already. The current system doesn't work very well because the medical profession do not take ME charities seriously - which may be a major reason why they do not get funds coming in. Changing that is not easy but it badly needs to change if the charities are going to be anything more than on the fringe
 
We have had a complaint that this thread is becoming very hard to follow and the moderators agree. Please remember that the topic of this thread is 'Maeve Boothby O'Neill - her life, death and inquest'

Before posting, consider if your post would be better on another thread. For example: This one is appropriate for naming discussions The use of the labels ME, CFS, ME/CFS

This thread is appropriate for some discussion of recent UK advocacy
#ThereForME campaign / Building an NHS that’s there for Long Covid and ME
 
Thanks of the note, Hutan. Hopefully the discussion has run its course.

I realise this is a confusing and uncomfortable area. Perhaps I would just add that on Thursday I took a tube train to exchange debate here about advocacy in the wake of Maeve's inquest, for chatting to the rheumatologists at a teaching hospital who should be joining that advocacy. They had not heard of Maeve, or of microclots, or really any of what we discuss. Someone said 'yes, chronic fatigue syndrome and Long Covid are similar in many ways: difficult conditions to manage' - likely oblivious of the 2021 NICE Guidelines and the fact that nobody is even attempting to manage because referrals are no longer accepted by rheumatology.

The gulf in communicating the significance of Maeve's death to the people who we need to do something about it is hard to comprehend. I think it is worthwhile picking through the things that might contribute. Maybe we are no further forward, but maybe some of the people present at the inquest will see things on this thread that they might not see otherwise. Next Thursday I intend to propose doing a Divisional meeting presentation on Maeve's life, death and inquest.
 
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