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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...

The problem is that the processes of muscle use involve chemical changes that will re-equilibrate within five minutes at most. A purely energy metabolic account just doesn't fit the time course of PEM. Delayed signals preventing re-use, in whatever way, could.

Yes, I took that as read. I guess the same applies to a large extent in the stroke case. The aim is to prevent a cycle of spasm. Whether you can find a way of providing a better opportunity to improve with a more specific approach would be the question. Some people do improve and if there is any...

That would be analogous to the more direct reflex effect with pain.

I think energy is unlikely to be the problem. There is no evidence for a problem with energy severe enough to explain the symptoms of ME/CFS. In general I think it is best not to try and mange people with ME/CFS on the basis of theories - of any sort. So far we don't seem to have a theory that...