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Dr Weir's 10-15 yrs may have been a rough indicator, not so far from 20, but I agree. I also think it is unhelpful to throw in speculation about 'evolution of a disease process'. It is hard to see what that could possibly mean other than spread of a mutating virus, and nobody I hope believes...

This to me is the key point. It is what I tried to argue in my Qeios piece. Dr Weir actually has no evidence for cerebral hypoperfusion actually being a problem in ME/CFS. It would be much better if he simply said that people with me/CFS cannot tolerate sitting up - for reasons unknown. Then you...

That would make sense but the fact is that I was told that for my wife to have ECT she would need to be sectioned, despite the fact that she was happy to have the ECT. This was explained by a very intelligent and communicative psychiatrist and confirmed by the second assessor. I wonder if it was...

That would appear to be likely to be the most detailed RCP advice on the matter. It mentions the Mental Health Act a large number o times but going through it is always in relation to refusal to accept feeding. In the case of 'Nina' it is raised in that context. I get the impression that...

Indeed, but then the patient is refusing to be fed presumably. If they want to be fed there is no need to deprive them of liberty - you just offer the treatment. It is the illogicality of invoking a procedure to deprive choice when choice is not the problem that, as my old boss used to say 'even...

Interesting. It was the reference to the use of the mental health act that seemed so odd.

Yes, I agree. There seems to be a flawed logic involved and I suspect that the quoted guidance isn't intended tone interpreted in the way being implied. It makes no sense. As SNTG points out, there is a difference between going for PEG etc or TPN IV. It is not clear from what we have heard so...

The BPS view seems to be that ME doesn't exist and that CFS does not cause starving to death. That makes it difficult for them weigh in maybe. They would have to claim that the problem was another psychological illness. In which case the hospital would have been negligent not to section Maeve...

In most cases enteral feeding is probably possible but I agree that there are probably situations like multiple injuries or facial burns where it might be necessary. The guideline may relate to elective use of TPN in chronic disease in contexts that exclude these though.

One key point for me is the claim that RCP guidelines say that TPN should not be used where there is a functioning gut unless the patient is detained under the Mental Health Act (sectioned). Being sectioned is not a feature of the patient's illness and not something they have control over. It...

It is something I have increasingly come to see as relevant. The acute infective illness with apparent neurological features at the Royal Free actually has nothing to do with ME/CFS other than that it was one of many apparent triggering events. And as I mentioned in my Qeios piece, that means...

One thing that continues to puzzle me is that, unless I am mistaken, not a single ME physician regularly uses S4ME. I have learnt almost everything about the illness, including the background research, from following the forum. When I was involved in RA and lupus I followed a lupus forum in the...

I had forgotten that all this happened while Covid was at its worst. It is not that surprising that things might be confused. A lot of people died during the pandemic for reasons other than Covid. But I don't think this in any way alters the evidence that the management was disorganised and...

Wasn't Frackowiak's taxi driver paper shown to be garbage data? It doesn't, as you say. They don't seem to explain why the psychiatric controls are different from healthy? And if there is a difference what is the justification for putting all psychiatric patients in one group? And so on.

How do they blind the trial if the dosage is different for Maraviroc?

Maybe this is in a particular sub-category but my understanding is that an inquest would decide between, for instance, natural causes, misadventure and unlawful killing, without needing to specify who was guilty of what crime.

Something I have no information on is the outcome for people in this situation who get feeding support. Other than that there appear to be a few people known of who have been maintained on nutritional support for more than a year.

A Daily Mail piece today quotes from a message written by Maeve. I am pasting it here so I know where to find it. "She had also completed an advanced decisions document about her future treatment if she was unable to communicate her wishes. In it she wrote: 'I wish to remain at home and be...

The name Ramsay is just in memory of Melvin Ramsay as far as I know. Anyone can have a Ramsay Fund.

I think @dave30th is likely to be tracking the inquest.