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

[Sorry, this is a long post, looking at the history. I am in the process of writing an article related to this which I may post a draft of fairly soon.]

It is another of those cases where people pick up words and use them in inconsistent ways to try to prove a point when all they are really doing is confusing people and making themselves look foolish to people familiar with the words.

Multi system-disease is used in medicine to mean a process that has identifiable effects on the structure or workings of many systems. Which diseases that covers is pretty arbitrary. Lupus is called multi-system because you get kidney failure as well as arthritis. Diabetes has multi-system effects but because early on we knew there is one central problem of lack of insulin it isn't so often described as multi-system, but it can be. Multiple sclerosis tends not to be called multi-system, although it causes blindness and leg paralysis, because all features of MS are attributable to the same damage to central nervous cells (not even peripheral nerve cells).

So there is no agreement on exactly what deserves calling multi-system but the term is used when discussing what we know about underlying processes we think are causing symptoms. In ME/CFS we have no idea what the processes are so talk in these terms is cheating.

How am I sure this is how it used? In the context of ME/CFS politics I think the best illustration is that if 'ME' were, maybe like 'CFS', psychosomatic, nobody would call it a multi-system disease, despite symptoms everywhere. If it were caused by viruses or autoimmune cells hidden in lots of different tissues it would.

My guess is that the use of 'complex multi-system disease' for ME/CFS (or in fact ME) started with the people who decided to re-write the Canadian criteria with the International Criteria. Fukuda had given criteria for 'CFS' that could be due to anything. The Canadian group wanted to create a consensus that included 'ME'. That made sense in the clinic since both terms pretty much described the same group of people - at least those whose lives were seriously impacted. I forget how much the Canadian criteria talk of causes but it is interesting that the group included people who were to re-convene for the ICC.

The ICC group decided to write new criteria just for 'ME'. I.e. the consensus hadn't worked. Moreover, members like Nancy Klimas were convinced that ME was a 'neuroimmune' disease. (It may be but we don't know.) The ICC criteria were written specifically to describe a neuroimmune disease - a multi-system disease (other systems were thrown in, making it more 'complex'). As a result the ICC do not really make sense and we have no idea whether they recognise anything worth recognising.

The reason why 'neuroimmune' was brought in, I presume, was because 'ME' had originally been the name of a proposed process that produced neurological signs as part of an acute illness at the Royal Free, in Iceland and maybe Incline Village. We still don't know whether there really were any neurological abnormalities in this acute illness and anyway, it is not ME/CFS as we now understand it. It was just one of many infections that can trigger ME/CFS.

So 'complex multi-system disease' entered talk about ME as a way of saying 'this cannot just be psychosomatic CFS because we know it is a specific process that affects nervous immune and other systems - we have evidence'. But we don't. The reason it isn't psychosomatic is that if you listen to people with ME/CFS over a period of years you can see that it doesn't add up. And psychological treatment doesn't work.

But the medical profession as a whole didn't buy this muddle about ME. What they were prepared to buy was the rather sensible Canadian idea that CFS=ME or ME=CFS, if you limit CFS to people with PEM, and they are the people who really need help. And ME here is Ramsay's 'chronic ME' not the acute 'neurological' ME. The psychiatrists preferred CFS/ME but didn't really want to recognise even the limited PEM based Canadian illness. ME/CFS won out, somehow, but 'complex multi-system disease' may have sounded impressive, so people wanted to justify it. They did that by saying that it meant that symptoms were produced in lots of parts of the body. But the truth is that they liked it because it implied that there was a multi system cause that was not psychogenic.

The end result is that although the 2021 NICE Guidelines are a major step forward they still carry all sorts of unhelpful baggage. Ironically, that is baggage of both sorts. There is still mention of multidisciplinary teams of rehabilitating therapists, of the sort beloved by the BPS crowd. There is also still the ghost of the confusion between acute neurological Royal Free disease and ME/CFS. ME/CFS isn't a neurological disease in any sense we understand, either. The WHO probably were as muddled as the ICC people.

I think it is important that people with ME/CFS do not get the impression that there is some dreadful process eating away at all their organs that may eventually kill them in the process. People get so ill they die, yes, but as far as we know if someone found the magic infusion these people could return to normal in an hour or so, just as people with myasthenia or Parkinson's, diabetic coma or Addison's can. In fact even more normal because as far as we know there is no permanent damage to anything in ME/CFS.

 

I appreciate the context here thank you.

I am glad I haven’t give my doctors any information re ME being a complex (I am with
@Hutan on this) Multi-System (because I was unsure what I’d be saying) disease (I know that they would not look kindly upon me for that one).

But wait have I?
I did request a purple book be sent to GP directly once. I had no idea what was in it. I thought MEA are usually pretty conservative about these things. In Shepard I trust. Je suis épuisée. I’ll hope for the best.

 

This needs to be understood and emphasized more by advocates. Compare us to other illnesses where people are switched back on

 

brilliant explanation, makes total sense to me. I wish we could stop with the "over 9000 published papers showing biomedical abnormalitities" too (or versions of that sentence but they always say 'over 9000', there might have been 9000 apers but they certainly dont prove anything do they, and at one point there was a noticeable jump from I think it was 5 or 6000, suddenely people started saying 9000. It makes me cringe, but i did it myself (with the lower figure) when i was ignorant. Ie before S4.

In case its in any way helpful -knowing what the charities put out - there is an MEA leaflet (for your debunking process) New ME Association Leaflet: Is ME a neurological disease? | 19 February 2020 - The ME Association

MEA clearly think it is neurological (I wouldnt know either way but what you say makes sense to me Jonathan, I just mean that if it contains wrong info it needs retracting/changing

 

This is really interesting and will be a great article, thanks for explaining it to us non-medicals

 

I think the confusion comes in because people with ME, from anecdotal reports within the community, do seem to die prematurely at higher rates than non disabled people of equivalent demographics and living circumstances. This
may not be the case once suicides are removed from the picture.

Or it may be that like so many other disabled people, people with ‘mental illnesses’ or autism or learning disabilities, people with ME are struggling to get timely testing and investigation for their symptoms and this is leading to later diagnosis or more cancer deaths. Also maybe people with severe ME are too often not physically capable of attending hospital and this is leading to earlier deaths. Or perhaps a decent proportion of people are being misdiagnosed with ME/CFS. When they have other less common more dangerous, especially if unrecognised and untreated, diseases.

But I think more complicated now is the fact that people can have LC meeting the PEM criteria for ME/CFS and getting similarly waste basket-ed by their doctors, they are absolutely not getting tested for organ or vascular damage before getting this diagnosis.

There isn’t capacity to do such testing for everyone who needs it in UK NHS because the healthcare system has burned through staff with the let it rip no infection control Covid non-management strategy.

The service had been stripped of resources and staff by the last government including all our pandemic readiness. We have never had sufficient advanced scanning technology. If we got some now would probably still struggle for staff work them.

So people are getting given ME type LC diagnosis without something like organ damage or vascular damage or blood clotting dysfunction on record, and dying early.


Having ME or long COVID even if you are told you meet ME criteria are more dangerous than ME pre SARS-CoV-2. For everyone. People with pre existing ME aren’t immune to Covid and it’s absolutely everywhere.

If you have any kind of disease at all or any health condition or impairment you’re gonna be at extra risk of dying on top of your already existing risk because hospitals and GP surgeries are so much more dangerous now than they were.

 

Thanks @Robert 1973 No, it's not.

Prevention of Future Deaths reports, like the recommendations of public inquiries, are helpful in framing policy considerations but, sadly, are not legally enforceable.

Likewise the duty to respond. It's a matter of good practice - but there are no official sanctions if a response is not received.

"Recommendations" are not mandatory, rather like NICE "guidance".

 

"The Guardian view on the coroner’s role: if deaths can be prevented, they should be":

https://www.theguardian.com/comment...ole-if-deaths-can-be-prevented-they-should-be

Discusses the problems with the PFD system in detail.

 

Trial By Error: Extensive News Coverage of Exeter Coroner’s “Report to Prevent Future Deaths”

https://virology.ws/2024/10/08/tria...ter-coroners-report-to-prevent-future-deaths/

 

Interesting to read that. ME/CFS could probably be argued to be a neurological condition - lots of things like muddled thoughts and light sensitivity would go with that. The only problem is that diseases of the nervous system without any evidence of structural abnormality or failure of specific nerve pathways are normally regarded as psychiatric and Dr Shepherd would not want to give that impression.

The mistake I think is to try and prop up a neurological classification that I am pretty sure arose, even if through a winding path, from the idea that the acute Royal Free illness had local neurological signs indicating specific pathway malfunction.

And there are bits that stretch the symptoms to try and meet that, just as the ICC do. It includes 'atypical seizures', loss of sensation and tinnitus. I don't think atypical seizures are usefully seen as part of ME/CFS. I don't think there is any documentation of sensory loss over and above the common problems many people get from peripheral nerve pressures. Tinnitus is so common it is probably coincidence. It also mentions failure of swallowing but I don't think there is any evidence of a local neurological defect - back to where we started.

 

Sleep and headache disorders are considered neurological & only a small number are attributable to any structural or localisable problem. Some such disorders are considered neurological even when they have neuropsychiatric manifestations e.g. as can occur in Kleine-Levin. There's no evidence of affective or thought or personality disorder etc as intrinsic to the syndrome so no basis to classify it as psychiatric.

"Atypical seizures (i.e. not epilepsy)..." - I'd like to know precisely what they mean by this - presumably they don't mean movement disorders or convulsive syncope - pseudoseizure? We don't want to confuse or conflate ME/CFS with FND. And certainly swallowing difficulties are not the only reason patients might need enteral feeding - I came very close to needing that and have never had any difficulty swallowing. I think there's potential danger in muddling some of these cases up.

 

I just find the science fascinating. Wouldn’t you think actual scientists and medics would love to research something so elusive?

 

Ha, yes. I gathered the meaning. Over here we'd just use a different four-letter word ending in -ck as the first part of the phrase.

 

https://twitter.com/user/status/1844260209851834730

 

Such a powerful piece.
Sarah is outstanding.
What a mamma.
Maeve shines through.

 

Apologies for just popping in for that off-topic aspect:

Good point. I think every medical discipline also deals with non-structural illness/ syndromes -- with or without attaching a "functional" / psychosomatic label to them?

I had some good experiences both with 2-3 neurologists and psychiatrists by the way -- they needed a while but then they realized and accepted that there's nor drug or talking therapy that could help but I qualified for needing appropriate 'pragmatic' support and this is what they provided me with.

Most helpful is my current doctor who's both a neurologist and psychiatrist.