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

"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

 

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.

 

Very much this.

 

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.

 

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.

 

I’m a bit confused about Case C. If that’s supposed to be Maeve O’Neill, since it mentions death and an inquest, she was 27, not 19.

 

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.

 

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.

 

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.