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

23rd July Maeve wanted NG removed
This was seen as progress
Sarah feeding Maeve from a syringe

BT says Maeve wouldn’t have coped with NJ
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I’ve seen a tweet that Maeve was vomiting from NG feed, BT says she’s never see that before.

There’s discussion about the different preparations for the feed. Ultimately it seems they weren’t sure any feed would be suitable due to causing M to crash, so they just…didn’t do anything?
Hoping our notetakerNightsong can clarify later.
 
Sarah Boothby is questioning Beth Thompson, Dietician

S- Delay of 5 days admission (in June) BT- awaiting Consultant agreement on pathway

S- What is ME Crash? BT-for Maeve it was heart rate, palpitations, extreme exhaustion, couldn’t open eyes but knew she was there
 

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Lou B Lou said:
We've just got to get rid of that word "Tired". It's being repeated in the Inquest. "Tired" is the most trivialising word, it leads the general public and some/most medical/health professionals to think that ME 'tiredness' is something they may have experienced, or something close to it. Because of the word. Everyone has experienced tiredness. That word is sabotaging us
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This times a million. So sick of seeing a life-destroying disease reduced down to 'tired', 'tiredness', 'fatigue', 'chronic fatigue'. That has GOT to GO. ME will never be taken seriously as long as people think it's 'tiredness', which they of course see as just laziness and therefore to be mocked and laughed at.
 
I am beginning to get a clearer picture of just how badly people with ME/CFS will fall between all the stools laid out in the RCP guidance. The guidance rightly indicates that both enteral and parenteral support can always be justified if failure of nutrition is life-threatening, but it also brings in confusion about functional gut problems.

What seems to be missing from the accounts given in guidance documents is that there is a third type of problem in addition to structural gut failure and the disordered thinking of anorexia nervosa. The more I hear the more it seems to me that it is the symptoms of intolerance that are the both the beginning and the end of what matters. For people with very severe ME/CFS feeding may become intolerable, for reasons unknown and several of them. I have had pushback against this wording - being asked to talk of difficulty feeding rather than intolerance but I think intolerance is what needs focusing on.

When I say intolerance I am thinking of something impossible to overcome, rather like the intolerable hunger people can get after surviving craniopharyngeoma (hypothalamic damage). These people if left to themselves cannot avoid becoming grossly obese. No human can resist the hunger. In ME/CFS I think what health professionals do not understand is that there is an equally impossible to resist need to avoid certain stimuli. Another example of such impossibility is standing up if you have sever knee pain. It is not simply that you cannot stand the pain. Neurological signalling that you have no control of, or even awareness of, blocks the muscle contraction and prevents standing.

I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.

And the management has to pivot on management of the symptoms. Quiet side rooms are not just a kindness to sensitive souls. They are a physiologic necessity. So in emphasising just following good nutritional practice in my Qeios article I think I have missed something crucial. Standard policy as written out at present steers past what is needed for ME/CFS.
 
SB - what was the rationale for making feeds 3 times per day and triple increasing the bolus?
BT “We didn’t know what to do” and refers to eating disorders treatment

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SB - how many times was feeding delayed due to no pH reading (it seems “aspirate” and checking its pH has to happen before the feeding)

BT - (can’t hear answer)
 
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Jonathan Edwards said:
I am beginning to get a clearer picture of just how badly people with ME/CFS will fall between all the stools laid out in the RCP guidance. The guidance rightly indicates that both enteral and parenteral support can always be justified if failure of nutrition is life-threatening, but it also brings in confusion about functional gut problems.

What seems to be missing from the accounts given in guidance documents is that there is a third type of problem in addition to structural gut failure and the disordered thinking of anorexia nervosa. The more I hear the more it seems to me that it is the symptoms of intolerance that are the both the beginning and the end of what matters. For people with very severe ME/CFS feeding may become intolerable, for reasons unknown and several of them. I have had pushback against this wording - being asked to talk of difficulty feeding rather than intolerance but I think intolerance is what needs focusing on.

When I say intolerance I am thinking of something impossible to overcome, rather like the intolerable hunger people can get after surviving craniopharyngeoma (hypothalamic damage). These people if left to themselves cannot avoid becoming grossly obese. No human can resist the hunger. In ME/CFS I think what health professionals do not understand is that there is an equally impossible to resist need to avoid certain stimuli. Another example of such impossibility is standing up if you have sever knee pain. It is not simply that you cannot stand the pain. Neurological signalling that you have no control of, or even awareness of, blocks the muscle contraction and prevents standing.

I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.

And the management has to pivot on management of the symptoms. Quiet side rooms are not just a kindness to sensitive souls. They are a physiologic necessity. So in emphasising just following good nutritional practice in my Qeios article I think I have missed something crucial. Standard policy as written out at present steers past what is needed for ME/CFS.
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Well said. It’s like we’re aliens, they need to understand that we’re different “under the bonnet” than the average unwell person. They’re like a medieval blacksmith being tasked with operating a 3D printer to make a horseshoe.
 
Trish said:
You're doing a fantastic job, Nightsong. I'm sorry we don't seem to have anyone else well enough to provide such detailed summaries. I thought about signing up to listen, but know I'm not up to writing notes while listening.
Please only provide feedback at your own pace and if you feel it's not harming your health.
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Thanks for the kind words, Trish & others - I've found if I rest well in advance of these, stay lying down, rest completely in the breaks, do nothing else on the same day and rest a lot afterwards it's just about within my tolerance on an otherwise reasonable day.

Inquest now on lunch break. Beth Thompson will take further questions from 2:20; the social services / safeguarding witness will testify at around 2:45.
 
Jonathan Edwards said:
The more I hear the more it seems to me that it is the symptoms of intolerance that are the both the beginning and the end of what matters. For people with very severe ME/CFS feeding may become intolerable, for reasons unknown and several of them.
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This is what I was try to say the other day on (I think) a different thread.

You don't need a medical qualification to know that a combination of stresses can be experienced as intolerable, and that illness makes people infinitely more susceptible. If the individual happens to be 14 months or 94 years old, even hospitals seem to grasp this; they don't demand a medical rationale or have an inter-specialism pissing contest over it, because it's just ordinary compassion. I know it isn't enough in a case like Maeve's, but it's a start.

[Ach, when you've accidentally pressed 'submit' instead of 'multiquote', you can't add a quote to the edit!]

I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.
Click to expand...

This is it. I can see there might be pushback, but it's important.
 
Jonathan Edwards said:
I am beginning to get a clearer picture of just how badly people with ME/CFS will fall between all the stools laid out in the RCP guidance. The guidance rightly indicates that both enteral and parenteral support can always be justified if failure of nutrition is life-threatening, but it also brings in confusion about functional gut problems.

What seems to be missing from the accounts given in guidance documents is that there is a third type of problem in addition to structural gut failure and the disordered thinking of anorexia nervosa. The more I hear the more it seems to me that it is the symptoms of intolerance that are the both the beginning and the end of what matters. For people with very severe ME/CFS feeding may become intolerable, for reasons unknown and several of them. I have had pushback against this wording - being asked to talk of difficulty feeding rather than intolerance but I think intolerance is what needs focusing on.

When I say intolerance I am thinking of something impossible to overcome, rather like the intolerable hunger people can get after surviving craniopharyngeoma (hypothalamic damage). These people if left to themselves cannot avoid becoming grossly obese. No human can resist the hunger. In ME/CFS I think what health professionals do not understand is that there is an equally impossible to resist need to avoid certain stimuli. Another example of such impossibility is standing up if you have sever knee pain. It is not simply that you cannot stand the pain. Neurological signalling that you have no control of, or even awareness of, blocks the muscle contraction and prevents standing.

I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.

And the management has to pivot on management of the symptoms. Quiet side rooms are not just a kindness to sensitive souls. They are a physiologic necessity. So in emphasising just following good nutritional practice in my Qeios article I think I have missed something crucial. Standard policy as written out at present steers past what is needed for ME/CFS.
Click to expand...

Do you need more input from people with ME/CFS who are or have been provided with NG and other nutritional support about how it was made feasible for them, and what did and didn't help them. I'm thinking of Whitney Dafoe as the most well known person on long term nutritional support, but I'm sure there are lots of others who may be able to tell their stories, and their carers too. Stuff about sensory stimuli, feeding angle, medication that helps, how their food intolerances are dealt with, whether they have recovered sufficiently to eat again etc.
I'm sure you've read many cases, but would it help to formulate a set of questions they may be able to answer to fill in gaps in the picture, particularly of management strategies that help them?
 
No word from the Observer so i assume they won't be publishing.

Not very happy with myself for sending it off before i could read most of the feedback on here.

So disturbed by everything in this thread. Every patient's worst nightmare. I can't begin to imagine what she went through.

This has to stop.
 
Also I was heartened to see Putrino really going for the BPS lot. I know people have to remain professional but I think those who are complicit in ME denial and the harm it causes need to be called out for what they are by their colleagues. It's not enough to politely disagree.
 
@Jonathan Edwards : "I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.

And the management has to pivot on management of the symptoms. Quiet side rooms are not just a kindness to sensitive souls. They are a physiologic necessity. So in emphasising just following good nutritional practice in my Qeios article I think I have missed something crucial. Standard policy as written out at present steers past what is needed for ME/CFS.[/QUOTE]".




Listening to the patient and believing the patient without prejudice could have helped a lot.
 
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