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I admit that I don't understand ME. I assume that nobody does. But it seems you maybe have not understood my suggestion. It has nothing to do with suggesting that ME is a sleep problem. It is theory free, as I said several times. It is simply about getting objective evidence for what sort of...

A doctor is now involved... Rather a lot of doctors have been involved for quite a long time. I am afraid that pinning hopes on Sarah Myhill with a flying cape makes the piece fall flat on its face.

To be honest what is there at present just looks like blather. OK, having someone with experience of looking after severe ME is likely to be sensible - but only if they know what they are doing and without any objective evidence on this it is difficult to see how they can know. With luck they...

I guess you measure not getting worse just by getting the same numbers on your activity measures. It is an interesting point that most clinical trials do not even consider worsening and staying the same is considered failure. But the situation is not unique. There are now a lot of trials of...

I think you are missing my point. I am suggesting testing plans such as sleep hygiene in a trial of the sort Keith Geraghty suggested - where the people giving the advice have no opinions about the value of the plan. Instead of health care professionals giving it you can hire some trial...

I am not sure where the idea of asking banks of questions came from. I was just interested in what forum members and maybe eloquent people like JTB might give as starter suggestions.

I don't remember exactly what he said. However, the implication was that whatever methods are normally used to assess psychiatric problems showed up more with people with more symptoms. Unless one denies that anyone can diagnose psychiatric problems I think that has to be taken as at least...

That sounds right. Just knowing that people have tried a plan before and found it helpful, and that a simple sensible study has confirmed that would seem to me to begin to provide the sort of trust-based grounding that supportive care needs.

I am going to try pottering off to bed, with the window slightly ajar. I have an unreasonable belief that this will get me a good nights sleep. On the other hand I have been doing it for forty years and all that has happened is that I have got older and cannot sleep on my right side because of a...

Indeed. Yes, that is the question. My guess is that you start with things already advised or popular with patients. You cannot test too many things at once so I suspect that finding a core set of things to start with would not be too hard. If a trial is set up then by definition you provide...

I understand that sentiment. But, in a rather different context, my wife when she was ill wanted to be left alone. If she had been, she would have died. She was already down below six stone. She had a different sort of illness but good advice is not always welcome. Daily postural drainage for...

Yes, I see no prospect of any of this affecting the current guideline decisions. It is for the future. In part it is something I might want to raise with the committee as an alternative to the sort of theory laden trails we have seen to date - as an illustration of something constructive to take...

The trouble is that I am pretty sure that there isn't any evidence. And I am wary of clinical consensus documents. That term implies that in the absence of evidence doctors have to find a common ground based on their favourite prejudices. I am more interested in patients' experience as starting...

The comments on Amazon are not very encouraging. It sounds as if the author knows all the answers - for some reason that is not clear.

I would guess at comparing plans in place over a period of say six months. It is not that anyone has to follow the sleep routine, if it is problematic. It is simply suggesting that it is proposed as a plan to try - with no value judgment attached.

That makes sense to a degree. But without controlled studies how do the staff know what is the appropriate way to deal with any particular set of problems? 'Professional judgment' may be good common sense but historically it has mostly been bullshit. The teams at present constantly talk about...

Thanks, I edited to indicate I realised you were making a lateral point.

Yes but that is not an issue of planning support. It is a political issue relating to the PIP system. I am not asking for suggestions for advice per se. I am asking for suggestions for plans that might be tested to see if they improve, or worsen, long term progress. Edit: sorry, I see you...

It may well be, but that doesn't matter. We still want to ask the question as to whether advice on trying to standardise sleep is helpful, harmful or neutral. At the moment the advice is there. I had assumed it was fairly uncontroversial because nobody had complained about it at NICE scoping...

But this is all theory based stuff. I am just interested in finding evidence that practical eadvice actually helps. That should be theory neutral. If it isn't you are back in the expectation bias carousel.