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

Sean said:
Won't happen. There is no world in which Wessely will voluntarily give up being the centre of power and attention, and slip quietly into obscurity. It is simply not in his nature. He will be proactive to the end of his days.
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Perhaps. But he has certainly been smart enough to distance himself from ME in the last decade.

If he stays and a biomarker/treatment is found he is going to find himself at the centre of a media firestorm.
 
Spartacus said:
I became sick after a hepatitis B vaccine. I saw a survey recently (can't remember where sadly), and was suprised to see that more of the patients in the survey had developed ME after a vaccine
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The trouble is that surveys offering vaccines as an option will attract responses from those who got ill after vaccines. Their results wouldn't be included in surveys that didn't give it as an option, which might show the most common trigger was something else.

Spartacus said:
Except an awful lot of us didn't get sick after a virus.
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I didn't either, but I don't know my trigger wasn't a viral infection. I only know I didn't have any symptoms.
 
Jonathan Edwards said:
My wife is a consultant radiologist and although she did full medical training has never had any specific interest in respiratory metabolism. Nevertheless, it was apparent to her on looking at the video that Binita Kane was making ungrounded remarks that would look foolish to 95% of physicians. I don't think it will help the chances of getting a specialist centre set up to see this.
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While this might be true, a number of physician also thinks it foolish that obese patients can be classified as undernourished. Physician's finding something "foolish" could just as easily be caused by lack of knowledge and bad attitudes.

Though I'm agreeing with the broader issue of claims being made about our illness that are not well enough funded in evidence.
 
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.
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That may not have been the best wording. What I am trying to put across is that the 'ME' diagnosis was as much based on confusion and bad science as was 'CFS'. And the retention of the ME diagnosis by charities has at least in part reflected a continued confusion with that bad science. There never was a disease called ME, not even at the Royal Free, as far as we know. The medical profession gradual came to a consensus to that effect. We now have a meaningful concept of a long term disabling syndrome characterised by PEM. To be clear that we are talking about that concept it makes sense to use ME/CFS.
 
Midnattsol said:
While this might be true, a number of physician also thinks it foolish that obese patients can be classified as undernourished. Physician's finding something "foolish" could just as easily be caused by lack of knowledge and bad attitudes.
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Yes but I don't think that is relevant to this point. My wife recognised that Kane was making statements that were not likely to be grounded in any evidence and most physicians will do the same if they see the video. Having detailed knowledge of the field I think they would be right. But what matters is that claims of this sort will only alienate the medical world further - whether or not that is justified by the deeper truth.
 
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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/
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
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She doesn't give the kind of detail necessary to give an opinion on this, but I would just mention here that mildly elevated lactate levels might well be an entirely normal result of minimal activity after prolonged bed-rest. And there certainly isn't the evidence base to make assertions that a "key cause of PEM" is known; not even close.
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/
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Yes, we do. We should also take care not to frighten the ordinary ME patient with speculation.
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/
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No there aren't.
 
Charles's interview is sensible. He doesn't raise anything very specific but focuses on the 2021 NICE guideline which seems a good strategy.

Binita Kane's thread is mostly about sensible proposals to get some specialist centres going. The pity is the focus on unspecified treatments when I think at present the key issue is attention to environmental stimuli to allow standard procedures for feeding support to be used to best advantage.

The 2021 Fluge and Bella review does not seem very relevant or helpful. They may not even be thinking along those lines these days. It is mostly about circulatory changes that aren't as yet well documented - just speculations.

The real problem for me with all these theories around metabolism and lactate is that the time course of PEM is wrong for being due to going above a metabolic threshold in the short term. And lactate studies have been done and not much found.
 
If there’s one thing I’ve learned since joining here, it’s to beware of any black/white statements on what ME is or what causes it.

Possible rhetorical question, why are there so many qualified Drs who are confident to say “it’s this” when the research is kind of sketchy? I’m not a scientist and even I’d drop in an “allegedly” when putting forward a pet theory.
 
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!
 
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