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As far as I know Hemsley has not provided anyone else with information about what he doing, or what the financial arrangements are. If other trusts cannot refer then it is not much help. It sounds as if at least the Hospital has some idea of what people with ME/CFS are, and might need, but I...

Very moving story. And I see nothing happening and no way for it to happen. But just maybe the penny will drop with all this.

Sectioning a very big deal for the doctors, I assure you. It is almost as big a deal as switching off a ventilator. How it appears to patients is a matter of how it is presented. In a case like this if I was talking to the patient I would make it clear that the choice was a pragmatic one...

Agreed. I don't think anyone is suggesting that. Agreed. The argument I raised was whether a physician, knowing that sectioning was the only way to keep a patient alive in the face of the stupidity of the system and the people who had created and ran that system should consider offering the...

I also feel uneasy and have tried to think this through. The salient points for me are. 1. Maeve's parents have both made it clear they want her case to be used to help others. 2. Nothing will change until physicians accept that ME/CFS is their responsibility and that it cannot be dumped in a...

Suggestions welcome.

I don't think I am very good on video. The acoustic is terrible too.

Talking to Maeve's mother it seemed hard to discover who was actually in charge of Maeve. If he chaired her feeding issues MDT that sounds as if he was in charge of that aspect.

Feeding via a vein, known as parenteral nutrition, is problematic long term because of infection of the catheter tip and thrombosis. It can be done for months but the risks are considerable. People over 65 given PEG tubes will mostly die within a year because they were going to die within a...

Thanks for the helpful feedback @hotblack . I am glad the snakes and ladders is not completely off target. The description of OI, regardless of heart rate, is interesting. I like these two sentences. Maybe I could include them somehow.

I think we are wandering off what the original analogy was about. The idea was to explain why there appears to be no energy or ability to use muscles. That clearly comes with pain and for some people the pain is the main thing and for others it is the sense of paralysis that I was giving an...

Cognition fits fine because my analogy does not include specifically suggesting that PEM is a spinal reflex. Not at all. That may not have been transparent. I am using the spinal reflex as an analogy for things that go on in the nervous system over which we have no control whatever. Even in the...

As I understand it, very simply because a group of gastroenterologists led by Dr Peter Paine have been pushing for a consensus not provide feeding support for anyone who does not either have gut obstruction or psychiatric illness with loss of mental capacity. The argument is that feeding support...

She was considered to be of sound mind by one physician we are told. That is all. What I do not understand is why the gastroenterologist who presumably advised against further feeding support options did not make that decision for himself. There are aspects to this story that are not at all clear.

That was to me what made the sectioning issue relevant in that as I understood it from snippets from the inquest Maeve's care was under a gastroenterologist who felt that proceeding further required a judgment of lack of mental capacity, otherwise the pathway would be 'functional' which was to...

I don't think we know that or how the decision was made. I am not actually suggesting that sectioning would have been the right way forward in this instance but I think it is misleading to suggest that the idea of sectioning was somehow an insult or an enormity. If pressed, in a similar position...

Journalists tend to be little help in this area because they live by their emotions. Their job is to colour people's lives with stories. They tend not to be very good at arguing for a difficult reasoning path to the truth rather than 'let's do some exercise!! It must be good for us.' Even people...

To keep here alive. If you were a refugee and you had to be sectioned to get political asylum and stay alive you would go for it I think. We cannot let arguments of procedure or philosophy get in the way of people's lives. The need to section was to get around a perceived procedural rule that...

I see that you have been a member since Nov 2017 @boolybooly. Maybe the discussions we had about all this with @Esther12 were before that - maybe even on PR. The history George M gives here is well documented and we made use of it to write letters to the SMC and Sense About Science and Colin...

It would be interesting to know the history but my impression is that the interactions between Charles Shepherd and the Forward ME people and Martin Baker of NICE that got the guideline review agreed were rather independent of patient advocates looking at the detail of data. I may be wrong. I...