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I think that shows the danger of things like MUS.

I was a bit confused about this because you seem to have 5 responders and 5 non responders. I assume you did a regression calculation to generate a hyperplane that separates the two groups and this gives the equation you quote and hence the ROC curve. However, its normal to use different data...

They come from the revolutionary communist party I believe.

There isn't really any evidence to point to in these areas. Without a good understanding of mechanisms its just clustering of reported symptoms and people making guesses over what is important/different.

Its fair to consider them in the guideline scope which I assume says they can look for evidence and give advice on that. I suspect they will find very little evidence but if they do look at what causes deterioration they they may find some evidence for too much activity (or anecdotal evidence...

I think @Graham is somewhere near the area

I'm clearly missing out on some history here.

Just to point out that this is an Edwards who worked at Liverpool hospital and seems to only have published 2 papers. Not Jonathan Edwards.

I assume she didn't understand why they are meaningless.

I think things like Vitamin D should be looked at for all house bound patients as should other vitamins where people struggle with diet. When my daughter was struggling to eat a dietitian was helpful in terms of supplements as well as general advice.

I get the impression there is no real evidence base. I've seen PACE results be quoted by them (but without attribution). I think they do claim an evidence base but never seem to point to anything anyone would think was reliable but rather they seem to believe that if they chant 'evidence based...

I think there is an important point here that I suspect comes from how multidisciplinary teams work in the NHS. To me you need different specialist to do the stuff they do. For example the OTs to look at home adaptations to help with disability. So to include them(and social workers etc) I would...

Was that Crawley's clinic or the adult one?

The answer for me is they are out of curiosity as to how he can defend his actions.

I think anything questioning the integrity of PACE that he can't answer is an accusation.

Congratulations @Simon M at getting yourself a PhD student. This could be a really good example of including patients in research work also good from a perspective of getting someone in research to understand what ME really is which I always feel can feed back into better research.

I would ask him to comment on why as measures get more objective they show a smaller change with CBT and GET with the biggest change based on CFQ and least we believe with the step test.

I think this could be the link https://www.gofundme.com/meactionuk

That's the point. Lots of implicit threats so it becomes a case of parents managing doctors and telling them what they want to hear. I do think it would be worth collecting anonymous accounts.

My daughters temperature used to fluctuate quite quickly so when she felt worse it went up. It does occur to me that if someone is getting an abnormal temperature rise when stressed then although it may look like stress causing it it isn't normal. So it suggest that a part of the body's control...