What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

Yes, I thought that the NG tube was the only one tried.

I would like to read the Coroner's 27th Sept statement again where I think she summarised the treatments that had been tried. I can't find a link to it- to be followed up tomorrow. Please add if you have it anyone.

 

This really is off topic, we have all of this info on the Maeve inquest thread which is probably where this should be.

I think my point is quite straightforward- the reasons given at inquest by the medics were that the infection risks and risk to the stomach were too great to use any/all other types of feeding. Those risks surely remain whether one is under a section, or not. I don’t think they discussed doing these alternatives under a section because a section wasn’t carried out. A section wasn’t carried out because the medics felt there was capacity.

I feel like I’m on the stand and I’m being questioned. I think we all know what the medics did and said “doesn’t make sense” and feels very wrong.

 

My thought is that it would do much better to stay here because the other thread may be accessed by people who do not want to read this.

I don't think they necessarily do because the relative risks change. Moreover, the issue is what would actually have been policy and doctors are notoriously bad at explaining how they justify their policy - it shifts with assumptions all the time.

Yes, I am really sorry about that. But I am spending about three hours a day listening and listening and thinking and thinking and arguing and arguing in the hope that I might be able to help. I want to make sure that what I say isn't based on my misunderstandings. Quite often it is. I am still not sure I fully grasp what went on here. There are at least two different possible sequences of events. They relate differently to BSG and RCP policy and if I try to do more it is going to be in terms of criticising those policies.

I am just asking for everyone's help.

 

what I do is a flow chart. Start with “feeding” and draw lines down for each type (NG, NJ PEG PEJ TPN) at the end of the line give the reason “given at inquest” why it wasn’t done OR that is wasn’t even mentioned at inquest, and “assumed” reason. From there you do another line with your argument why that reason is BS.

It might help you as I feel like you’re having a few different conversations at once, and I can’t answer them all nor should I be expected to on a thread about George Monbiot’s article.
Apologies don’t work when followed by “but”. I didn’t agree to help you do this, So just assume my messages on this thread can be disregarded, no need to quote respond, the info is on t(e other thread should you wish to look.

 

It’s bad enough. What do those facing all this but have no support and find those around them sort of have these it can’t be that bad try this for a year attitude not prepared for the responsibility of how huge a set back and deterioration that causes

it’s terrifying having everyone around you insist on enforcing ‘hope’ ie they hope the illness we talk of is BS and we are wrong cos they are going to not give us what we need and force us to risk going from can just about look after ourselves to disaster because it’s getting frustrating’ then when what happens is as predicted abandon and repeat again

that’s the story of ME

it’s terrifying because you find out no one holds to account those who enforce decisions onto you to be responsible for the entire implications you wear and are then blamed for. And because that is then even more ‘too much’ expectation of help, even tho it should be a ‘you break it you buy it’ you instead get the same done again because people renege and aren't up to standing by their own decisions and the full consequences whilst happy to do so for you.

it’s a horrific life .. well it isn’t a life BECAUSE you never even get those choices. Things get undermined in some way because people can't honour things, they eventually give someone what they needed months before as if the situation is the same now and it 'not working' proves it wouldn't have when that person was more well before being messed around.

I think those who live at the brunt need a voice in this.

when life as people would deserve has never been an option on the table and you will not just be left holding the baby alone for others choices but also you’ve had little others have had or taken for granted then it’s a completely different ball game of what’s important

just tiny joys you want to have once ticked off becomes vital and limiting pain and control over your body but also honesty in this sort of thing so you stop being in the position you are forced to perform one day and stop being a disappointment to all by your mere presence. It’s just looking for moments of peace

and those who have options and protections can’t speak for or see that world nevermind anyone relate to the real decisions people there are really facing.

 

The problem is that this was post hoc rationalisation in the full knowledge that this was a patient assumed to have capacity. The reasons are all BS but I want to get as close as I can to the sequence of reasonings that went on in 2021. That doesn't come out of any data we have as far as I can see.

If a decision was made that PEG could not be offered whatever then as far as I can see the conclusion has to be just that those making the decision were incompetent. If on the other hand things would have been different had there not been mental capacity and that distinction derived from the writings of members of BSG then we have a policy issue that needs addressing. The second is for me a more important possibility to chase because it has implications for others.

 

so presumably us combing the forum, twitter and other media wouldn’t help? By ‘us’ I mean willing and able volunteers

 

The way things have been twisted to be set up removes all the faith in that person and voice over themselves

no matter how many times they allowed themselves to be damaged by the lie of a compromise of ‘we’ll just try my way first and if you don’t improve we’ll support you in yours’ the support in your way never happens and no one ever takes responsibility for the harm they caused but denies that

and so the functional = inferences is a terror. It’s beyond ‘just’ health destroying it’s a removal of accountability and responsibility of others whilst placing all choices with them

I find it hard to get people to understand the life I’ve lived under because well it’s asking people to imagine removing so much you’d assume you don’t even see it. It’s a tyranny where as your body is broken you are punished for it and more control over yourself is removed by those who made those bad decisions in the first place. And your voice counts for nothing. Speaking or showing your body is proof of madness for it not fitting with their expectations and you know that so you are always having to deal with keeping yourself safe from this human nature thing no one else sees nevermind is on the rough end of.

we have strange dilemmas vs others if if you’ve never had a kind year in your life are you better of stopping thinking of your future that doesn’t add up and taking the little security you have to buy seeing what one quiet year without hassle and bullying feels like so that you’ve experienced it. Once. And maybe that would help your health more.

But to others who won’t , refuse to delve into the truth you are faced with they see it as madness. Writing off your future security. Not realising there is no future or security whilst your health is being made worse. So your choices are really invidious and different when you step back and think what do you have wanted out of your whole life

Not onky do you have no support or even someone who will be by your side in those little things you choose to have it actually gets undermined so you never even get those little bits of peace. That year of feeling what it was like in life to just not be a massive hassle to the extent someone has to let you know and make you miserable ‘as a nudge’ fir.

all these pseudo psychologists love to talk about expectations- of others and yourself - as if they’ve ’got it’ on that and it’s all perceptions. But the massive difference with me/cfs is it’s the opposite it’s leading your entire existence under imposition of others slap dash expectations or doing them to yourself self-bigot ing in an attempt that if you just please them then maybe removing that bullying will be less exertion than pushing your body so far beyond to meet them. Those are the choices we’ve lived under. Nudge - the profession of giving someone no good choices that work. An ends meeting existence is never on the table and you know it even in a lull because we’ve been there and know quiet just means someone hasn’t got fed up yet to the point they impose 'that frustration' on you (as if the inconvenience to them is worse than you experience daily).

it’s important we include those who have no support because fir me/cfs the hostile environment has made that to be a much much bigger proportion of the cohort and for a more extended time. I don’t know if it’s most of us or a niche but it can't fail to be more than other conditions. We know those with support who don't experience this need to be heard, and can offer a blueprint to what is better, and there are many who I massively appreciate get it and see it and are great supporters. But sometimes some of those people also inadvertently undermine us, don't want to hear it as it will scare them, and don't believe how vulnerable you are/what happens without a safety net (or someone who will disapprove of that sly dig someone who 'seems nice normally' will say to you on the street for no reason other than they can get away with it etc), or were in the think of the wrong timing to get it and unlucky with the demographic you are surrounded with (certain sectors seemed to be 'trained' more in certain simplistic ideas).

Because the social etiquette medal is given to those who say 'it's not always that bad' etc. And many of those who have it that bad are too ill to look convincing even if they can speak. So it's a sensitive topic. But for the opposite reasons people think - things can be so bad they aren't heard, or we assume there is some misunderstanding etc.

but when we do try and speak on ‘living’ in it and what that means we know the choices really are and the reality of what people do despite promises or hope very few believe us , so we feel we can’t even if we have the energy because that world seems so obscure and sad to others they assume it mustn’t be true and is somehow a product of a state of mind. Which takes more autonomy away as a risk.

Which reminds me of that thread by the Australian ME organisation (ME tip of tongue memory) which had 3 words in it: one of which was autonomy

which I think was a topic so fundamental, but so little-done yet that I mentally bookmarked it for a 'how do we even start but this is absolutely key to be bringing into discussions about pwme'

then it’s a mammoth task to describe in words that make sense to others. This is the right thread for this particular post because a lot of eg the RCP/LM and strange ideas of us just needing re-education - well it's all about having a right to who we are, as people, as well as safety and living etc. I just haven't got the elquency to nail that one right now.

 

have we gotten to the bottom of why this no PEG thing came in, and I mean really - was there some funding thing or was it sold on a waste of money in these types. Which could be about 'commissioning' (primarily commissioned for IF, not x, y, z which take more time or whatnot?) stuff I guess that I wouldn't be aware of?

Or as I saw notices from I think one of the colleages or somewhere official about concerns of reports of PEG reducing during lockdown was there reasons to do with that which either began or accelerated this? What actually started it all and then gave the thing traction?

I have a feeling that the two things you've listed are feeding off each other to bridge cognitive dissonance, because of that need for post-hoc rationalisation/justification that a decision was correct etc. The recent video from Merryn Croft's mum and sister has detail that is distressing but makes me think that even where something ended up having to be done as per someone giving clear instruction it would help there is potentially reluctance from those who end up with said instructions. I can't be sure whether that is an 'on principle' or some of the things might seem that way but were due to risk with anaesthesia or what not.

 

I’m not in this discussion, I was on the Monbiot thread. If you’re looking at the Maeve case, you can re-read her thread as to what was said at the inquest, and the extensive discussions (which some here took part in) don’t tag me in here, I’m absolutely beyond my limit with being tagged, especially where a few words of a sentence I wrote are taken out of context as a start point for some other discussion.

from page 8 of the thread about Maeve a selection of quotes. Not my words, words reported as being what was said at the inquest.

 

The problem is that there is no formal guidance. It is all a matter of interpretation, even if the implication is there.

I may have got this quite wrong. The real reasons for things going wrong may be something else, which is why I am keen to try to check and re-check. We probably need a formal enquiry into all these cases but I don't see that happening.

Unfortunately my attention span is not great these days and I tend to rely on others to pick up things I forget,

I would be happier if this discussion was on a thread that did not carry an individual name.

 

I must admit I was surprised when I saw the title as I had, rightly or wrongly, thought this thread was looking move beyond just this one case.

[added - thank you for amending the title]

 

Thanks, yes.

I think with the revisiting of the original information from X it is clear that the diagnosis pf ME/CFS has effectively been used to deny options that otherwise might have been provided. Other things would have been done if the diagnosis was not 'functional'.

Clearly other factors like home context and time frame are relevant but that is taken into account in general guidelines anyway.

 

Is ME/CFS officially classified as ‘functional’ by, I don’t know how to put this, central NHS hospital guidance or those instructions that they send around?

Or is it that BPS pump out webpages and papers including chronic fatigue or chronic fatigue symptoms or CFS/ME in their abbreviated list of conditions that they consider to be functional and this makes everyone concerned confident it’s close enough to official hospital policy to go ahead with out fear of looking like you’re needlessly starving people to death when they tell you they’re hungry and thirsty and you say that there’s nothing you can do?

Or it is it local level hospital guidance, for only some or maybe for most individual hospitals?

Also is that the guidance to not treat those functionals, who are a waste of resources and don’t need help anyway, is obscured from public view as far as possible or is it an explicit secret guideline somewhere, like the hospital policy no one was able to see recently.

In which case hard to say where the instructions came from with any precision or whether they exist at all in any specific context?

Or is it that all these medics don’t have official guidelines at all they just know that they know what to do and what not to do, because they are so very on to us all with our ‘non specific symptoms’ wink?

 

The problematic guidance is not hospital policy, no does it come from BPS psychiatrists. It comes specifically from gastroenterologists who are physicians (RCP members) and also members of the British Society for Gastroenterology. They have written articles and guidance protocols that propose that feeding support should be discouraged for people with 'functional' illness.

Whether or not they specify including ME/CFS or CFS/ME in this group I forget but physicians with this sort of view (which seems to be the majority these days) tend to do so. What they have focused on is the idea that Ehlers Danlos Syndrome patients have this sort of functional problem. I have discussed this in my updated Qeios article ( https://www.qeios.com/read/T9SXEU ). As far as I know this is complete nonsense and simply reflects the 'unhelpful beliefs' of physicians passed on to patients as inappropriate diagnoses. There is this strange irony that the people who believe in 'functional' are the often same people who elaborate stories about non-existent 'biological' problems. (BPS likes to have its bio bit too but a nonsense bio bit.)

So these writings are out there (and cited). Feeding support is supervised by gastroenterologists so the writings are known to the controlling feeding support. 'Gut-brain axis' seems to be their favourite term.

What I think is needed is for a dialogue to be set up with the College of Physicians to challenge the content and use of these writings and to try to get the College spokespeople to commit to saying that they are inappropriate. Approaching the College rather than BSG may have the advantage of being able to enlist support from branches of medicine that can see things more clearly from a distance.

 

Part of the problem seems to be the use of shadowy categories that are both explicit and not. Some people are put into them, explicitly or not, when guidelines don't provide answers.

The danger is that this allows healthcare to do nothing. If a system's based on guidelines and there's no guideline, there's no responsibility.

That's palpably indefensible, but it'll happen by default if no one stops to think about what's going on in front of them, or if no one is in charge, or if people don't know what they can do in guideline-free zones and common sense has been regulated out of the system.