"Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

Dolphin

Dolphin

Senior Member (Voting Rights)
"Failings in the care of patients with Very Severe ME" by Dr Nigel Speight

https://meglobalchronicle.wordpress...he-care-of-patients-with-very-severe-me-vsme/

A shocking new article by Dr Nigel Speight who helps many desperate young people with ME and their families, to try to arrange safe care and nutrition.

He gives case study information on historic & current patients at risk in NHS hospitals in the UK.

Extracts:
«At the end of my talk one of our best nurses said “So what you are telling us is that everything we have been taught as nurses is wrong for this condition”»

«The court order was reversed and the girl was allowed home to make a good spontaneous recovery.»

Reminder to people in Ireland: Dr Speight's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2024. Plus he is seeing patients aged 20 or younger for free while he is in Ireland:
https://irishmecfs.org/blog/dr-spei...20-or-younger-for-free-while-he-is-in-ireland

https://twitter.com/user/status/1769061939668193317
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This is an important document.

I have been thinking that this is perhaps the next big battle that focus needs to be turned on. I am hoping to make a bit of headway but want to keep things confidential at present. NICE made some sensible comments but more is needed. For GET and CBT the Royal Colleges could just about get away with flanneling since people tend not to die of CBT much. For the Severe cases with feeding problems we need clarity and honesty from professional authorities.
 
It's particularly upsetting that in one of the cases Dr Speight describes, the hospital got around the NICE guidelines by denying the patient had ME.

The attitudes all of them encountered is frightening, but removing their right of consent by involving the courts is an outrage.
 
Jonathan Edwards said:
This is an important document.

I have been thinking that this is perhaps the next big battle that focus needs to be turned on. I am hoping to make a bit of headway but want to keep things confidential at present. NICE made some sensible comments but more is needed. For GET and CBT the Royal Colleges could just about get away with flanneling since people tend not to die of CBT much. For the Severe cases with feeding problems we need clarity and honesty from professional authorities.
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Very much this.
 
Jonathan Edwards said:
For the Severe cases with feeding problems we need clarity and honesty from professional authorities.
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Both mild and moderate cases can have feeding problems, especially when in PEM. I don't know how it is in other countries, but here in Norway better information about feeding problems in the patient population in general could give help at a lower level of feeding support than tube feeding.
 
Jonathan Edwards said:
For GET and CBT the Royal Colleges could just about get away with flanneling since people tend not to die of CBT much.
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Not to take away from the urgent need for better management of people with very severe ME/CFS, and hoping not to distract the conversation, but:
I just wanted to note that CBT and other interventions based on a belief that ME/CFS is psychosomatic and can be overcome if the person is diligent enough absolutely can kill, and probably have done in larger numbers than is recognised. For example, the adverse effects report from the MAGENTA Gaunt et al study included the hospitalisation of a young person for suicidal ideation that was noted to be 'possibly due to GET'. And the recent Konig et al paper reporting that many people had had suicidal thoughts in response to exposure to psychosomatic theories.

I suspect the numbers of people with ME/CFS suiciding at least partly because of 'you can think and behave your way out of your false illness beliefs if you really want to' interventions is greater than the numbers of people with ME/CFS dying from a lack of appropriate care with feeding problems.

Again, absolutely, every death of a person with ME/CFS resulting from a lack appropriate care for feeding problems is an avoidable tragedy, and there must be action to prevent those deaths.
 
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Midnattsol said:
Both mild and moderate cases can have feeding problems, especially when in PEM. I don't know how it is in other countries, but here in Norway better information about feeding problems in the patient population in general could give help at a lower level of feeding support than tube feeding.
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We desperately need a good natural history or just a basic description of the range and variations of symptoms in ME and of associated/co-occurring conditions. I am not sure even people with ME have a full understanding of what ME can involve for others. Certainly a lot of us have symptoms we might never have discussed with a doctor and some that may have never been recorded/reported anywhere.

I agree that a better understanding of eating and feeding issues across the full spectrum is needed, but also I think the issues of those requiring alternative methods of feeding combined with the risks/health costs of hospitalisation for those with very severe ME ought to be very straightforward to address even with our our current limited knowledge. It should be fairly easy to set up a system that listened to the patients, met their sensory needs and addressed the clear hierarchy of alternative feeding methods through the various tube feeding options to central lines. We could move now, and the simple fact that people are regularly dying because of the unambiguous failure of our health care system to address this should be a matter of the highest urgency.
 
Shocking stories. But sadly not in the slightest bit surprising.

Continuing decline in my already problematic gastric function, and trying to get that dealt with free from the threat of being psychosomatised, is one of my nightmare scenarios.

Particularly as it has taken a distinct turn for the worse in the last 9 months, courtesy of a double course of broad spectrum antibiotics to treat a persistent throat infection. Was hanging in relatively okay until that.

In fairness, the medicos here have not yet shown any inclination to go down that path, and so far they consider the symptoms explained by the consequences of the antibiotics, and the confirmed Barret's esophagus, plus short term side-effects of a standard colonoscopy. But we all know how quickly that can change once a, um, psych-friendly clinician takes a keen interest in your case, and how difficult it can be to stop them, and undo the damage.
 
Peter Trewhitt said:
I agree that a better understanding of eating and feeding issues across the full spectrum is needed, but also I think the issues of those requiring alternative methods of feeding combined with the risks/health costs of hospitalisation for those with very severe ME ought to be very straightforward to address even with our our current limited knowledge. It should be fairly easy to set up a system that listened to the patients, met their sensory needs and addressed the clear hierarchy of alternative feeding methods through the various tube feeding options to central lines. We could move now, and the simple fact that people are regularly dying because of the unambiguous failure of our health care system to address this should be a matter of the highest urgency.
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The feeding needs of pwME should already be covered by more or less internationally agreed upon general guidelines to maintain good nutrition status in patients (be it in hospital or at home), but for some reason these guidelines are not being followed. Except the problems of orthostatic intolerance, I don’t think I’ve ever seen that mentioned anywhere official as something that need be taken into account.

I obviously know my own country best, and here we have problems like lack of knowledge of the importance of nutrition support and different solutions, lack of resources (nutrition is downprioritised if time is tight, without thought of the consequences that malnourished patients require more support and resources down the line), a general disdain for providing anything extra when it comes to food (patients that dare ask are «just spoiled» and «need to realise they are not at a hotel»), no clear chain of responsibility when it comes to feeding/nutrition and willfull ignorance of the epidemiology we do have on the subject. This sadly affects all patients, not just pwME but of course for us there is that additional layer of lack of knowledge. Of the small amount of (bad) data we have 1-2/3 of patients in Norwegian hospitals or home care situations are malnourished.
 
It is not only young women and girls who have problems with eating, due to the severity of their ME.

A male in his late forties was sectioned and treated as if he had anorexia nervosa in a psychiatric hospital.

He had previously been to his GP, because he was having issues keeping enough food down. The GP only acted when the guy had lost a great deal of weight and that was to arrange for him to be sectioned.
 
Excellent article. It’s very important that the abuse and neglect of the very severe is stopped. A number of years ago I had severe ME/CFS. For a period of several years, I almost completely lost the ability to swallow, had huge gastroparesis and also developed numerous food sensitivities so that I was down to just 3-4 foods. I couldn’t go to a hospital because I knew I’d die there so I went several years with just very small amounts of food and liquid through a straw, no medical care whatsoever. The consequences were huge in terms of malnutrition. Still evident in muscles, teeth, skin and hair.
 
Sid said:
Excellent article. It’s very important that the abuse and neglect of the very severe is stopped. A number of years ago I had severe ME/CFS. For a period of several years, I almost completely lost the ability to swallow, had huge gastroparesis and also developed numerous food sensitivities so that I was down to just 3-4 foods. I couldn’t go to a hospital because I knew I’d die there so I went several years with just very small amounts of food and liquid through a straw, no medical care whatsoever. The consequences were huge in terms of malnutrition. Still evident in muscles, teeth, skin and hair.
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:broken_heart:
 
i do not recall clearly, but in his paper, whitney describes switching from yogurt to turkey as making him significantly worse in ability to eat, presumably due to gastroparesis.

i have been diagnosed as very severe, and due to a bunch of hits to my system feel very close to anything being able to tip me over into extremely severe.

i have gastroparesis, and i am recovering from a particularly bad, surprise attack of it that seemingly was caused by pureeed cauliflower [but which also seemed to have characteristics of gastroenteritis as if both occurred at the same time]. i seem to have sensitivities to cauliflower and broccoli, and certainly to insufficiently pureed food, quantity of food, fat, etc. i also have esophagus and gi problems.

i am trying to get more nutritional variety, and reduce repetition of foods so as not to lose the abiity to have them.
tonight apparently started turkey to replace one day of a 4 day cycle in which chicken took 2 days.

is there a reason to believe that turkey is a particular problem for gastroparesis? i am concerned as this meal was not pureed quite enough.

in addition to not pureeeing enough, particular foods cause problems. salmon, whether sushi or cooked, causes regurgitation and stuck food, for example.

so i was wondering if turkeuy is notorious as a texture or as a type of ingredient.
 
Samuel said:
i do not recall clearly, but in his paper, whitney describes switching from yogurt to turkey as making him significantly worse in ability to eat, presumably due to gastroparesis.

i have been diagnosed as very severe, and due to a bunch of hits to my system feel very close to anything being able to tip me over into extremely severe.

i have gastroparesis, and i am recovering from a particularly bad, surprise attack of it that seemingly was caused by pureeed cauliflower [but which also seemed to have characteristics of gastroenteritis as if both occurred at the same time]. i seem to have sensitivities to cauliflower and broccoli, and certainly to insufficiently pureed food, quantity of food, fat, etc. i also have esophagus and gi problems.

i am trying to get more nutritional variety, and reduce repetition of foods so as not to lose the abiity to have them.
tonight apparently started turkey to replace one day of a 4 day cycle in which chicken took 2 days.

is there a reason to believe that turkey is a particular problem for gastroparesis? i am concerned as this meal was not pureed quite enough.

in addition to not pureeeing enough, particular foods cause problems. salmon, whether sushi or cooked, causes regurgitation and stuck food, for example.

so i was wondering if turkeuy is notorious as a texture or as a type of ingredient.
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Turkey, to my knowledge, is seen as an easily digestible food and thus actually recommended with gastroparesis. This refers to the lean parts. For salmon the fat content is seen as most problematic, but in general fish is also seen as easily digestible.
 
I had a look to see what had been published on gastroparesis and ME/CFS and on gastroparesis in general. My findings:

Papers on gastroparesis and ME/CFS = 0.
Papers on gastroparesis indicate a recognised problem in diabetes (unsurprising) after surgery and with certain infections although these are obscure. The pathogenesis looks to be even more obscure and many of the papers are in the area of hand-waving speculation about oxidative stress and complementary medicine.

I get the impression that little is really known about gastroparesis and nothing about its relevance to ME. It seems to be something that needs some serious investigation. Maybe the NIH would have achieved more if it had focused on this sort of problem in severe cases rather than pressing buttons.
 
Jonathan Edwards said:
Papers on gastroparesis indicate a recognised problem in diabetes (unsurprising) after surgery and with certain infections although these are obscure. The pathogenesis looks to be even more obscure and many of the papers are in the area of hand-waving speculation about oxidative stress and complementary medicine.

I get the impression that little is really known about gastroparesis and nothing about its relevance to ME.
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Guidelines for treating it with diet are mostly based on best clinical evidence etc. As with much else in nutrition.
 
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