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

[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.

 

[Jonathan Edwards]

I'm not sure we can confidently declare this.

I prepare to stand corrected but my understanding is that the term ME was designed to cover what appeared to be a new epidemic neurological illness with signs suggestive of encephalomyelitis. ME/CFS has no signs suggestive of encephalomyelitis. I think it is a straightforward fact of history but am happy to be proven wrong.

It has nothing to do with whether or not the original acute illness was related to ME/CFS - it clearly was in some people. But apart from a very few elderly people nobody now has ME/CFS that has followed this putative acute neurological syndrome - which in the end was never clearly enough defined to continue to exist as a medical entity.

 

[Jonathan Edwards]

I think it is of interest that the Canadian Consensus Criteria of 2003, which are pretty sensible and practical, are criteria for 'ME/CFS'. The International Criteria that came later, and which require 'neurological' and 'immune' features on the basis of a speculated pathology yet to be found, making no real sense are for 'ME'.

 

[duncan]

ME/CFS has no signs suggestive of encephalomyelitis. I think it is a straightforward fact of history but am happy to be proven wrong.

It would no longer qualify as acute..

It has nothing to do with whether or not the original acute illness was related to ME/CFS - it clearly was in some people. But apart from a very few elderly people nobody now has ME/CFS that has followed this putative acute neurological syndrome - which in the end was never clearly enough defined to continue to exist as a medical entity.

I'm not clear that this is accurate.

The International Criteria that came later, and which require 'neurological' and 'immune' features on the basis of a speculated pathology yet to be found, making no real sense are for 'ME'.

I'm sorry, I have trouble with this. Could you clarify?

Im not trying to be quarrelsome. It's simply that your position seems to dismiss any possibility that a newly discovered process, or stealth pathogen, or unknown agent, might be behind ME/CFS, and might remove it from the table - when symptoms may dovetail with such a theory.

 

[Jonathan Edwards]

It's simply that your position seems to remove any possibility that a newly discovered process,

It doesn't remove it at all. But it would indeed be wild speculation to suggest that whatever particular virus cause apparent neurological signs of encephalitis at the Royal Free in 1955 was some how lurking about causing the unrelated illness of ME/CFS in people coming on after completely different, and in some cases well documented infections.

 

[duncan]

It doesn't remove it at all. But it would indeed be wild speculation to suggest that whatever particular virus cause apparent neurological signs of encephalitis at the Royal Free in 1955 was some how lurking about causing the unrelated illness of ME/CFS in people coming on after completely different, and in some cases well documented infections.

Wild speculation?

Don't wish to unpack all that, but why would it? Do you imagine we'd be able to distinguish it or even infer its persistence or lack of, no less prove it?

All I am suggesting is that just because we fall short of certitude, doesn't mean we should rule possibilities out.

 

[Robert 1973]

X/Twitter exchange between Dom Salisbury, Todd Davenport, Binita Kane and Sarah Boothby:

https://twitter.com/user/status/1839999309208514778

https://twitter.com/user/status/1840093288059326674

https://twitter.com/user/status/1840099984768635380

https://twitter.com/user/status/1840100225916252210

https://twitter.com/user/status/1840142261138645492

DS: I don't think we know enough about ME to say with certainty that it is caused by e.g., 'problems with oxygen delivery to the tissues.' Such strong statements set us up for ridicule if they turn out not to be true.

SB: Not if they are true. It was true for Maeve, for example. The clinical studies are not being commissioned, due to the usual obstruction from @The_MRC which has ruined so many lives for too long. Institutional neglect at state level is more than government alone can change.

TD: Taking bets that the average BBC Breakfast viewer hasn’t the foggiest clue about the difference between hypoxia and impaired peripheral oxygen extraction, nor do they care. You know what they think? Fatigue is a personality issue and ME is not real thing. Priorities, people.

BK: Thanks Todd. Quite tricky to talk about impaired aerobic energy production and an inability to produce sufficient energy on demand in short a sentence, under the bright lights of live TV aimed at the general public….!

DS: I'm not criticising you @BinitaKane — you did a good job. My point is that we have to tread carefully and learn from past mistakes. It's perfectly possible to communicate well what the illness entails and how it affects people, whilst acknowledging uncertainties about.....

causation and pathophysiology. 'We know ME is a debilitating energy-limiting condition, and there's evidence of X, Y, Z... etc'

BK: Agreed Dom. I’m always happy to be challenged and to learn. Thanks for sharing your thoughts.

DS: Thanks, and thanks for your advocacy.

SB (reply to DS): You must also give ground. Patient confidentiality is as sacred as it gets & I can promise you we KNOW WHAT WE ARE SAYING. It is not rhetoric. It is founded in the evidence @The_MRC & @NIHRresearch refuses to fund because the establishment is dominated by those who cannot learn.

 

[V.R.T.]

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

Why should the onus be on us to use the precisely correct term to prove we are good little patients and not hysterical secondary gain seekers? The idea that our pleas for help being disregarded because we said 'ME' not 'ME/CFS' could ever be fair is absolutely ludicrous.

We do not have an accurate name for this disease. Whilst I agree that ME/CFS is the best name for the time being, modifying an inaccurate physiological name with a trivialising, offensive and inaccurate syndrome name does not somehow make it more legitimate. Patients/advocates should not be punished for not adhering to it precisely.

It is your colleagues who have slandered and harmed and neglected us. We should have been taken seriously decades ago. We should not have to beg.

You may be right in practical terms, but in terms of fairness I think this is way off base.

 

[Sean]

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.

If not after all that, then what is it going to take? Is entrenched medical bigotry really going to win?

the good SirDoctorProfessor quietly retires into irrelevance before he is pushed out.

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.

 

[Sean]

As to the name, ME/CFS is the least worst option on the table for now.

 

[forestglip]

As to the name, ME/CFS is the least worst option on the table for now.

Still looking longingly at SEID over here.

 

[Sean]

Me too.

Unfortunately the patient community made it very clear at the time it was proposed that they strongly preferred ME.

So here we are.

 

[Midnattsol]

I also prefer SEID, but yes, here we are.