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

[MrMagoo]

I'm surprised the coroner can leave it at that because it basically leaves us with a paradox: ME is not fatal, but Maeve died of natural causes, which by definition has to involve a naturally fatal condition. Starvation is obviously not in itself a natural cause. The legal profession usually does not allow paradoxes, they don't make sense in a profession where clarity needs to be absolute.

Here the natural cause is starvation. Brought about by ME. Which was preventable. Hence the prevention of future deaths things. It doesn't make sense to make this a case about preventing future deaths if this death couldn't be prevented. Which it was. Because ME is not directly fatal.

If history serves, this may be a near worst case scenario. It depends on the medical acknowledgement that ME is fatal. Which is firmly rejected on the medical side. The rest was effectively a whitewash of everyone responsible. Basically it seems to separate the medical from the legal here, with each having the version that satisfies everyone except the victim, her family, and the giant community of people suffering the same possible cruel fate of being ideologically starved to death and other instances of medical mistreatment.

Starvation is a natural cause of death.
It’s a legally complex area to argue that she wasn’t provided with food/treatment, because she “was” and she refused a further hospital admission. She chose to stay at home, we all “know” she’d have died in hospital but there’s no scientific evidence to say she would have. In legal terms the whole thing is a grey area. A top legal mind could well find a way through it.

 

[JellyBabyKid]

How will Wessely's position on the NHS England Board be affected? Will he have to recuse himself during discussions on ME?

Based on history so far, he will be the first person the NHS ask for his "expert" opinion, which is a oxymoron to start with

Could he prevent discussions on ME?

Well he has so far...

Until someone actually sees that every illness/syndrome he has successfully psychologised has been shown to have a biological explanation and he is removed from causing further harm to patients and their reputation, and the whole mess investigated, we as ME patients are screwed.

The Long Covid clinics are being defunded under his watch too.

I genuinely do not know what will make a change, given the epidemic of people being diagnosed with ME following Covid, a clear precipitating cause, has barely made a dent.

I truly hope everyone that got us to this point, and Maeve's awful, preventable, death realises their complicity and feels the twinge of their conscience, but I very much doubt it.

 

[V.R.T.]

I have also, over the last ten years, been wary of being proactive rather than responsive, in order to avoid being labelled as a pre-ME activist, black balled from any respectable committee.

This, I think, is a huge problem with no clear solution. The amount of stigma that needs to be present for someone like yourself to be afraid of being labelled 'pro-ME' is mind blowing. I assume you were never accused of being 'pro-RA' by your colleagues.

Being 'pro' sufferers of most diseases is seen as a positive, a given even. The idea that you would be blacklisted from the wheels of power for being too pro cancer or lupus patients is equally unthinkable. Even with mental health conditions, being pro schizophrenia patients or pro bipolar patients would not be seen in anything like the same way.

I think, frankly (and not singling you out here Jonathan as I know you have done your bit, but speaking generally), medical professional allies need to have less caution. We need people to speak openly and honestly about what we face from their colleagues. We need the predudice called out. And the realities of our condition elucidated. Without veering off into unproven theories about oxygen and microclots etc. Polite disagreement is getting us nowhere, and when the status quo is people losing their capacity to function because of BPS treatments it is nowhere near enough.

 

[Robert 1973]

Based on history so far, he will be the first person the NHS ask for his "expert" opinion, which is a oxymoron to start with

And the first thing he will probably do is point out all the inaccuracies and/or lack of evidence supporting claims made by anti-BPS doctors at the inquest and since, just as he did (quite rightly) with XMRV, the same as he has done with many other false claims that have been made by people on the biomedical side for 30+ years. This is one of the ways he has succeeded in portraying himself as the heroic victim of anti-science activism. We must stop making the same mistakes.

 

[V.R.T.]

Based on history so far, he will be the first person the NHS ask for his "expert" opinion, which is a oxymoron to start with



Well he has so far...

Until someone actually sees that every illness/syndrome he has successfully psychologised has been shown to have a biological explanation and he is removed from causing further harm to patients and their reputation, and the whole mess investigated, we as ME patients are screwed.

The Long Covid clinics are being defunded under his watch too.

I genuinely do not know what will make a change, given the epidemic of people being diagnosed with ME following Covid, a clear precipitating cause, has barely made a dent.

I truly hope everyone that got us to this point, and Maeve's awful, preventable, death realises their complicity and feels the twinge of their conscience, but I very much doubt it.

The long covid clinic I was under was Wesselyite through and through.

Hopefully DecodeME points the way and the good SirDoctorProfessor quietly retires into irrelevance before he is pushed out. I mean I'd rather see him in the dock for what he's done to so many of us but I think an inquiry will probably only happen after he (peacefully) passes, as he is powerful now but when dearly departed will make an excellent scapegoat for the establishment.

 

[tuppence]

The truth is we know absolutely nothing about a 'disease' underlying each individual's situation. We do not even know if all people with ME/CFS have the same problem. As I have tried to emphasise in my Qeios piece, it is time to handle this entirely on the practical evidence, not on theories about oxygen or psychology.

Characterizing ME/CFS as progressive is another matter. It seems to be up to a point, at least for most. It's almost parasitic in that it debilitates but doesn't usually kill.

We do need theories to be postulated, if only so they can be tested and lessons learned including that any particular theory is way wide of the mark. The problem is that the theories being put forward appear to me to be no more than cursory speculation, often looking at only a very small part of the presentation of ME/CFS.

Worse still is the holding on to speculative cursory theorising, whether biological or psychological despite evidence refuting or not being explained by the theory. This gives the impression to Society something definitive is known, when in fact all that is known is that we know nothing about what causes ME/CFS, why it presents at so many different levels of severity and why for the unlucky minority ‘progression’ in increasing severity continues until a point is reached where life for the ME/CFS patient can become unsustainable in the normal physical, social and medical environment the vast majority of other people can cope with or benefit from.

We do know ME/CFS is one of the most disabling and difficult to cope with illnesses for both patients and those who care for them including HCP’s. This Inquest has written this message large for all to see.

Giving full cognizance to that knowing and not denying it by characterising the illness ME/CFS in the HCP domain as ‘functional’ is a very necessary first step to getting back to more ‘practical’ based health and social care, which I know from long experience was more easily accessible before speculative and unfounded theorising on the ‘functional’ nature of the illness ME/CFS really took hold in the HCP mindset from the 1990’s onwards.

We really do need to be clear as ME/CFS advocates (and as patients), about the health care barriers we are up against and what needs to change and then ask for that change in every forum and way open to us as individuals and as organisations.

Patients can exercise choice in the medical treatment they consent to and that they do not. Their choice should be respected not only by HCP’s but by Politicians and Health Care Policy Authorities who by law are not empowered to impose their own health care choice preference on individuals except in the most rare of circumstance when the individual cannot make their own choice.

It looks very much to me that a targeted programme of re educating HCP’s away from habitually ‘functionalising’ ME/CFS is an immediate major priority. It is clear that it is in all respects not just a failed theory of ME/CFS but over the last 30 years or more a damaging failed ‘practical’ response to the illness ME/CFS.

That we continue to know absolutely nothing ‘about a disease’ ME/CFS after all these decades despite considerable resource being put into providing (inappropriate’) health and social care for ME/CFS is a lesson that should be very much taken notice of.

 

[Daisymay]

And the first thing he will probably do is point out all the inaccuracies and/or lack of evidence supporting claims made by anti-BPS doctors at the inquest and since, just as did (quite rightly) with XMRV, the same as he has done with many other false claims that have been made by people on the biomedical side for 30+ years. This is one of the ways he has succeeded in portraying himself as the heroic victim of anti-science activism. We must stop making the same mistakes.

It needs to be pointed out to people that the NICE review of BPS research for the 2021 guidelines found 89% very poor quality and 11% poor quality and they rejected it all. So there is no valid evidence base for BPS view of ME.

Jonathan how do your colleagues who you mentioned earlier respond when they hear this?

 

[Jonathan Edwards]

ME is not fatal, but Maeve died of natural causes, which by definition has to involve a naturally fatal condition.

I don't think that analysis works. ME/CFS can be fatal either through starvation or suicide. There are lots of other fatal conditions where life can be maintained by technical support, such as gastrostomy, pacemaker, tracheostomy, iron lung.

 

[MrMagoo]

We do need theories to be postulated, if only so they can be tested and lessons learned including that any particular theory is way wide of the mark. The problem is that the theories being put forward appear to me to be no more than cursory speculation, often looking at only a very small part of the presentation of ME/CFS.

Worse still is the holding on to speculative cursory theorising, whether biological or psychological despite evidence refuting or not being explained by the theory. This gives the impression to Society something definitive is known, when in fact all that is known is that we know nothing about what causes ME/CFS, why it presents at so many different levels of severity and why for the unlucky minority ‘progression’ in increasing severity continues until a point is reached where life for the ME/CFS patient can become unsustainable in the normal physical, social and medical environment the vast majority of other people can cope with or benefit from.

We do know ME/CFS is one of the most disabling and difficult to cope with illnesses for both patients and those who care for them including HCP’s. This Inquest has written this message large for all to see.

Giving full cognizance to that knowing and not denying it by characterising the illness ME/CFS in the HCP domain as ‘functional’ is a very necessary first step to getting back to more ‘practical’ based health and social care, which I know from long experience was more easily accessible before speculative and unfounded theorising on the ‘functional’ nature of the illness ME/CFS really took hold in the HCP mindset from the 1990’s onwards.

We really do need to be clear as ME/CFS advocates (and as patients), about the health care barriers we are up against and what needs to change and then ask for that change in every forum and way open to us as individuals and as organisations.

Patients can exercise choice in the medical treatment they consent to and that they do not. Their choice should be respected not only by HCP’s but by Politicians and Health Care Policy Authorities who by law are not empowered to impose their own health care choice preference on individuals except in the most rare of circumstance when the individual cannot make their own choice.

It looks very much to me that a targeted programme of re educating HCP’s away from habitually ‘functionalising’ ME/CFS is an immediate major priority. It is clear that it is in all respects not just a failed theory of ME/CFS but over the last 30 years or more a damaging failed ‘practical’ response to the illness ME/CFS.

That we continue to know absolutely nothing ‘about a disease’ ME/CFS after all these decades despite considerable resource being put into providing (inappropriate’) health and social care for ME/CFS is a lesson that should be very much taken notice of.

Someone should do an FOI on how much the NHS has spent!

 

[ME/CFS Skeptic]

It’s a legally complex area to argue that she wasn’t provided with food/treatment, because she “was” and she refused a further hospital admission. She chose to stay at home, we all “know” she’d have died in hospital but there’s no scientific evidence to say she would have. In legal terms the whole thing is a grey area. A top legal mind could well find a way through it.

From what I heard she was only offered bolus feeding through a NG-tube. There are a lot of patients (who are often given the diagnosis 'gastroparesis') for whom this doesn't work at all. Guidelines recommend a NJ, PEG-J or gastrostomy to provide sufficient nutritional support for such patients. So I suspect here is a good case to be made that she might have survived if she was given this option. I find it quite frustrating that this core issue was hardly discussed during the inquest. if I understand correctly, Maeve and her family were never presented the option of an NJ, PEG-J or gastrostromy.

 

[MrMagoo]

From what I heard she was only offered bolus feeding through a NG-tube. There are a lot of patients (who are often given the diagnosis 'gastroparesis') for whom this doesn't work at all. Guidelines recommend a NJ, PEG-J or gastrostomy to provide sufficient nutritional support for such patients. So I suspect here is a good case to be made that she might have survived if she was given this option. I find it quite frustrating that this core issue was hardly discussed during the inquest. if I understand correctly, Maeve and her family were never presented the option of an NJ, PEG-J or gastrostromy.

The defence to that was that she needed to start with the NG tube and go through a sort of process of elimination, because that’s the guidelines if you can eat. When she finally got the NG tube it didn’t work plus made her ME crash. Then she was too ill to try anything else and the “risk” was too great, apparently. You’d really need a good lawyer who knows this area of law.
Everything is hamstrung by SOPs/policy/pathways in the NHS.

 

[JohnTheJack]

The other thing that I think is a serious mistake (as I keep saying) is to go back to referring to 'ME' which is confused in people's minds with the supposed neurological disease at the Royal Free. We are not talking about that at all. ME/CFS includes impairment of neurological function but it is not in any useful sense a 'neurological disease'.

I think that horse has bolted.

I've always thought the same about the RFH cases (and indeed other supposed 'outbreaks'): that they were in fact likely to be an unknown infection (probably virus) and that from that infection some had the same problems as we have seen after Covid, ie some post-viral fatigue and some with ME as in ME/CFS. To talk of an RFH 'outbreak of ME' would mean talking of an outbreak of ME in 2020-24?5?6?...

However there's no way the MEA is going to become the A of ME/CFS or the other charity will become AfME/CFS. Nor will patients adopt ME/CFS.

I was diagnosed with post-viral syndrome in 1986 and used that for years, but adopted ME as much as anything as a political statement (both against CFS and its proponents and to show solidarity with fellow patients). There is no question it has become totemic for patients and they will not drop it for ME/CFS.

However, the compromise at the moment seems to me to work: patients and supporters continue to use ME and officially and in research ME/CFS is used.

Incidentally, I remember a long thread on the other forum where E12 and I had a little bit of a (polite) ding-dong about the name in the future. I suggested that maybe the day will come when it's researched a way. I suggested that when, and would be quite happy if, we discover what it is/they are and the name is completely replaced by something reflecting what we eventually (I hope) know the illness/es to be. I have no emotional investment in the name. And actually, as it is what has destroyed my life, I actually hate it and everything it stands for.

ETA: tidied up a phrase without changing meaning.

 

[Sparkly Unicorn]

I have listened to the BBC 1 interview on iPlayer. Everyone should listen.
I think Sarah did brilliantly in conveying the confusion and absurdity of the situation.
Unfortunately, I think Binita Kane was seriously misleading. Her comments about oxygen lack are entirely unfounded and I think they compound a problem I already see in the Coroner's report.

The key error I see in the coroner's report is in point 5*. It might seem OK but the coroner clearly thought that 'ME' is some progressive 'disease' that will kill people whether or not they are fed. We know from Whitney Dafoe's case that this is simply not so. On a wider basis there are, as far as I know, no known cases, in which someone has died with ME/CFS from either metabolic failure or neurological failure. They die of starvation. Despite brain fog, patients like Maeve and Whitney remain fully rational and able to produce intelligent thoughts. Metabolic blood tests remain completely normal (unless of course the person is in a state of starvation).

The disaster is the point 5 justifies point 6*, which is factually wrong. She died because she was not fed, as Sarah says. Binita Kane's arguments are counterproductive here. They prop up a myth from people like Dr Weir that we are dealing with a progressively fatal disease.

The truth is we know absolutely nothing about a 'disease' underlying each individual's situation. We do not even know if all people with ME/CFS have the same problem. As I have tried to emphasise in my Qeios piece, it is time to handle this entirely on the practical evidence, not on theories about oxygen or psychology.

*
5.ME is a disease with no cure
6.Maeve's death not attributed to health care provider neglect

The issue Kane brings to the table is that whilst she is approachable and doing alot to bring another medical voice to the public debate is that with her treatment of triple therapy for kids it naturally brings her position into the controversial and possible fringe science before the actual research is done. It allows her argument to be discredited. Drs seeing kids on anti-coagulants is going to raise alarm bells for many.

They might have been wiser to wait for more trials and offering different treatments first before

 

[Hutan]

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.

 

[Jonathan Edwards]

I think that horse has bolted.

I don't see it like that. MEA and AfME came into being before the use of ME/CFS became a serious attempt by people like myself and the research community to find a compromise that avoided the RFH confusion, which is still embedded in some organisations' approach.

It is time for change. And, frankly, if patient advocates writing to Wes Streeting use ME and Streeting passes it on to anyone medical it will go straight in the bin. Moreover, I think that is fair. If patients want to be taken seriously by the medical profession they need to show that they know what they are talking about - not some 'neurological disease recognised by the WHO' but a real disabling chronic condition with no known basis. It is simply a matter of having a chance to make any progress. The name itself is an irrelevance.

 

[duncan]

The name itself is an irrelevance.

As chronic fatigue syndrome demonstrated?

 

[Jonathan Edwards]

ie some post-viral fatigue and some with ME as in ME/CFS. To talk of an RFH 'outbreak of ME' would mean talking of an outbreak of ME in 2020-24?5?6?...

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.

 

[duncan]

The original term ME had nothing to do with what we now call ME or ME/CFS.

I'm not sure we can confidently declare this.

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

It may be that they are related. We don't know.

I thought the idea was to not be over-speculative and over-reaching.

 

[Adam pwme]

 

[Midnattsol]

The defence to that was that she needed to start with the NG tube and go through a sort of process of elimination, because that’s the guidelines if you can eat.

The guidelines for deciding on a tube through the nose or a PEG/button in the stomach is only about how long one thinks the need for tube feeding will be present. If longer than 4-6 weeks a tube through the nose is seen as too irritating. Guidelines do however state people need to be seated and such-and-such angle for feeding to be safe, so there one would run into problems with OI.