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People in science working n problems where we are not making much progress scrabble around for evidence that patients are different from controls at least on average a little bit. That is fair enough if they are simply hoping to find some indirect clue to what really matters. But it is only a...

It does not look to me as if they have much of a clue of immunopathology and mechanisms. Why would antibodies to infectious agents tell us anything? And since people have been looking for antibodies like this for sixty years and found nothing more than a few red herrings I am doubtful that this...

What I mean by feeling better is all the time. 'PEM' is just not feeling better after exertion. That counts. So yes we have to find a way of dealing with what stops people feeling better all the time but to me that is not PEM. PEM is the result of whatever that is. If the people taking IV...

As far as I can see the choices are available - if you prepared to pay. If treatments have no proven value then a public health service cannot be expected to pay for those choices. My concern is something different and much more complex in its implications. I talk about it in my Qeios article...

I am very unimpressed by that passage though. This is a syndrome if it is anything. I can see the point in using a name recognised by patients but the rest of it sounds like 'turning it into a disease' in just the way that 'ME', as defined by Acheson, did, which took sixty years to unpick. It...

Yes, but that applies to things like rheumatoid arthritis, which isn't one thing either. When we do controlled trials we build in to the design the assumption that some will benefit and some not. But if you do not do properly controlled trials there is no way of knowing whether any of the...

If there is actually atrial going on it would be useful to know. But if this is just open label treatments then there is the usual problem of expectation bias. 'Feeling better' is ultimately what matters in ME/CFS, and we have nothing else to measure, so I am not sure in what sense it would be...

I wan't actually asking about effort. I was interested in what you meant by exertion to try and understand what you see as a problem

What do you mean by exertion, @duncan? Most people do pretty much equate it to effortful action. If you mean usage of respiratory metabolic pathways the question is why would that lead to PEM? When running a four mile race I had no real trouble most of the race despite using up lots of ATP. The...

If the idea is that this is a disordered signalling loop then yes that certainly makes sense. You might nudge the loop back into an upward spiral. But almost certainly you could get the same with drinking a cup of soup. Of course if drinking is impossible that is no good but I think there are...

The simple problem is that we have no reliable evidence of there being benefit. I don't discount the conceivability that there is some ongoing benefit but it is physiologically unlikely and nobody has shown the benefit so far in adequately controlled studies. 'Specialists' in ME/CFS hand out...

Sadly I do not think this is realistic. I am beginning to understand that looking after VS ME/CFS requires a very high level of skill even to do less harm than good. You need staff of high intelligence who have a lot of experience. I suspect that the numbers of people with this problem is tiny...

Yes, 'sickness behaviour' is a dreadful term, based on what animals do when you inject them with nasty stuff. Presumably they feel awful but you cannot measure that.

Perhaps another point is that this discussion arose in the context of very severe patients not being able to feed. I think it may be very misleading to focus on energy supply in that situation. We all remember Stephen Hawking, whose muscles completely stopped doing anything. That wasn't...

We don't actually know that saline helps through volume expansion. The amounts given are unlikely to make much difference even short term. There are lots of reasons for not giving blood. It is very expensive. It can carry things like AIDS and mad cow disease. If given repeatedly it incites an...

The athlete example works for these but one key point is that the time course in ME/CFS makes no sense in these terms through any mechanism that anyone has so far dreamt up. By what mechanism would organs by starved of energy supply two days after exertion? As indicated to Robert, I simply see...

There are lots of examples where disease symptoms are not signalling effects. If you are diabetic and your leg goes black with ischaemia going to the doctor and telling him that symptom is a matter of signalling. If osteoarthritic bone spurs prevent you from bending a hip enough to cut your...

I need to emphasise the point that there are several parallel components to the process, but one of them I think is exactly this. As I get old, and having quite a lot of worn out joints, I meet this all the time. The knowledge that I will get pain severe enough to stop me being able to put my...

Yes, and that would fit with a signalling error along the lines of something like 'sickness behaviour' without necessary needing inflammation as such.

But in a way this is the exact opposite of my position. I would like a scientific explanation in the long run but when considering treatment I am saying that a scientific explanation is irrelevant. The only thing that matters is reliable evidence of effectiveness. Clinical effectiveness evidence...