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This is just a short note in response to the probability that GET is going to be dropped from the NICE guidelines, along with that particular form of CBT. There have been many people working to achieve that over the last ten or more years: we have lost some folk, some have had their health...

I thought it was us men who were women's troubles.

I've been thinking over the years of a better way of describing our energy envelope, because none of them tie in with being able to push through it but then develop PEM – spoons, batteries, etc. all imply a fixed limit. So how about this analogy: Remote agricultural area, where the abundant...

I think we are missing the key symptom of ME: the ability to produce weird, inexplicable symptoms at almost random occasions, with just enough of a hint of a pattern to let us think, mistakenly, that we have cracked it.

If physical or mental function set up cognitive payback, that would explain why I can't really work out what my answers should be. I really don't know. And don't tell me I should keep a diary – that takes up too much energy, and I don't want to waste mine! To be honest, I either feel generally...

Ah, the old man gets repetitive, and is reminded gently by Trish! How on earth is anyone going to measure me going senile when I am already this bad? Mind, I wasn't proposing anything that needed strength. I was thinking something quite easy: even then I think we would fade before noticing it...

To me, fatigue kicks in when your energy/performance level starts to drop, and in the cognitive dissonance test that I was trying out, I guess really I was measuring cognitive fatigue – not the performance level, but an abnormal drop in energies very quickly. It is also a measure of the time it...

I can't suggest anything, but I have been trying to get the NIH categorical spending webpage up for some time now, but there's always a message saying "temporarily unavailable". I guess most of us are only on this planet temporarily, so it could be quite a few years yet.

The problem as far as I am concerned with all of the scales that I have come across is that they depend on a patient giving grades to the amount of difficulty experienced, and that is utterly unreliable and easily manipulated. When I was in hospital one of the nurses asked me what my level of...

To be honest, I wasn't particularly interested whether the limitations were due to ME or a combination of factors. This is what I had in mind, and if I had had a normal brain, I would have realised that I needed to explain that first. People, whether patients or researchers, often claim that...

Now that's an interesting alternative. I suppose I would previously have been 9/10, whereas now I am more 7/8. Notice that, as with most people, I am unable to give a straight answer. Do you think it is bred into us?

I think that many of you have strayed quite a long way from the original concept, and in doing so, have made it much more difficult. It wasn't intended to measure in any way the complex nature of ME, to reflect its variability, to give a picture of what could be managed in a whole day, or to...

Oh no, it couldn't be that finely scaled. It would only go from 0 to 20, and a chunk of that would be "healthy". I think Trish was talking longer term, in the sense of whether pacing does bring about a slow, distinct improvement. Certainly my score 20 years ago, 10 years ago etc. would be...

What exact phrasing then would you suggest at the start of the questionnaire? Aren't the scales used at the moment the same? Even biomedical studies are using the sf-36 and Chalder, amongst others.

I was thinking of it being a useful, broad measure for comparing a patient's progress over time, or for comparing patients with each other. A scale that goes from 0 to 20 cannot be a finely tuned gauge. The sf-36 really only goes from 0 to 20, but the scores are multiplied by 5 to make it look...

So make me a suggestion, and feel free to change the list. I'm a happypotamus when it comes to criticism. I've got a thick hide, and remain cheerful! Back in 2012 I carried out a big survey on the Chalder scale. Using the severity grades for the 11 questions (graded 0 to 3), folk who rated...

I like your post, but on this one aspect we disagree. If you tier the activities, you automatically inform the patient that they are tiered and change the way that they look at them. I'd not even group the walking questions together in the real test. Yes, but we are looking at it from the point...

I've been studying the sf-36 physical functioning questionnaire and the Chalder fatigue scale for some time now, and am convinced that they are too susceptible to outside influences. A question like "Walking several hundred yards – are you limited a lot, limited a little or not limited at all?"...

Thanks @MSEsperanza . It's on the backburner at the moment. I guess I was thinking of the original clan way back in the eighties, but your point is entirely valid.

I think it would be fair to say, looking at my calculation and Trish's, than any incidence rate per year above 0.01% would necessitate high recovery rates: ones that are easily visible. Refining the calculation will modify the numbers, but to a mathematician's eye, the figures are in the right...