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I do see everyone's point of view but my key thought is that things have gone wrong precisely because in a nearly impossible situation everyone has said 'Oh no, you cannot do that because there is a risk of this'. If you are faced with people in a burning house or someone dying of starvation you...

Continuing to worry about the complexity and anomalies of disease categorisation and the role of mental capacity I looked up the definition: Mental capacity is the ability to make an informed decision based on understanding a situation, the options available, and the consequences of the...

I constantly wonder what the motivation is for doctors to write reviews about things they do not know much about.

Current Rheumatology Reviews sounds like a junk journal. A lot of journals charge huge fees for publishing these days though. The strangest thing is that CRR is supposed to be a review journal (they are usually pretty bad) but this is a data paper. Which suggests that it may have been rejected...

I am not suggesting that the two situations are identical, but that they involve similar sorts of processes in combination. I also have variability in my ability to use my knees. If I have a viral infection like Covid, which I have had this week for the fifth time, then 'the power is just not...

I wouldn't look for evidence of PEM being something else. I understand it as a description of fluctuation. Wave on the sea are still sea, not some other stuff. Gusts are still wind. I don't see PEM as a 'different process' but rather the way the ME/CFS process behaves in time relation to...

Pretty thin. Where is the pathology if this is going on? Where are the physical signs of embolisation?- rash, nail fold infarcts.... The bright dots in muscle are almost certainly nerves in my opinion, not amyloid. And so on.

I have not seen any convincing evidence that you need to keep swallowing stuff. People often go on to parenteral nutrition for months and then back to normal feeding. Our friend Jo Cambridge was on parenteral feeding for a while even if she could swallow some fluids most of the time. I don't...

What hits me about Sean O'Neill's account is the complicity of the legal profession in denying ordinary people justice. I have a neighbour and friend who is a King's Council (and a Dame). I have texted her to ask for her opinion.

I can well imagine that new symptoms occur with PEM on the basis that when we are ill there tend to be thresholds at which new phenomena occur. If I am feverish I nearly always get shivers at times but only if the fever is severe do I get delirium at night. If I have my unexplained...

My understanding is that PEM is by definition a worsening of the same symptoms. So there would be no difference in the symptoms. I have come to understand PEM as identifying a time course rather than anything else. It is supposed to cover worsening after exertion but what I hear is that...

There still sseems to be considerable uncertainty as to what actually led to what decisions, judging from Sarah Boothby's tweets. I agree it is wrong that more information has not been gathered and that a full enquiry into the sequence of events is needed. It may be that the mental health team...

We will never know what might have happened. However, if existing guidelines were followed she should have been progressed through options for feeding support according to what was feasible for her. The coroner noted that the 2021 ME/CFS guideline does not provide additional advice on how to...

My impression is in keeping with @JemPD 's observation that it depends on the level of service. I was quite careful with my wording 'But in practice there is a conceptual line in doctors heads that puts it with the biological group.' They may not be aware that that line is in their heads or...

Do you think that line is about doctors' perceptions of whether the patient can 'help it' or not? In short, yes.

Maybe S4ME should make a formal request to Dr Hemsley to share his protocols with the patient community. (If I asked I might be seen as in competition.)

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...