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I think it is, simply because just telling staff to be more considerate about light and sound is not enough. There needs to be a deep understanding of the problem. It has taken me ten years on the forums to get to grips with the reality. No local staff will be in a position to care for one of...

It does but I don't think that is actually why it is tiring. We assume that we are tired by energy expenditure but actually we probably aren't. We are tired by something much more complicated we do not understand. When I was doing athletics and using up energy either fiercely in 100 yard sprints...

There seems to be the usual confusion here between genetic studies of HLA-DQ (which alleles you were born with) and gene expression studies in active cells - which are completely different issues. HLA-DQ is present on antigen presenting cells as just part of their make up. I cannot see any...

It may be in a sense. And of course suitable side rooms are available in all hospitals. What is lacking is a team of people with the expertise to make use of those rooms wisely for people with ME/CFS. I am interested in the suggestion that the referral to St Mark's is more about providing some...

I fully understand what you mean by that and I think it makes sense and must have a biological basis. If I travel a long distance I find it makes me feel as if it is an hour later at the end of the day, even if it was sitting comfortably in a train. But. We have no understanding in biological...

I am pretty sure there is no evidence at all. I see nothing that indicates that anaerobic threshold is relevant. When someone wakes the next day, and the days after for weeks, feeling much worse there is no plausible reason why that should have anything to do with aerobic threshold being crossed...

Yes. I don't assume that but if for cases where it does not apply the case to be made is different.

And I am very aware that they do, but then my approach to tackling the problem and the arguments used would be different.

It would make sense of the situation if there was. I agree that there ought to be other places where TPN could be set up , of PEG. If St Mark's has been offered as a 'neurogastroenterology centre' specialising in 'gut-brain interaction', which would not be surprising then everyone concerned she...

The problem we have, if we are trying to argue from evidence to get proper care is that we have no evidence that an ambulance ride will produce long term worsening any more than it would for someone with bone pain from myeloma or whatever. And the alternative would seem to be dying of...

Agreed but insisting that people have a 'disease' called 'ME' gives them enough rope to hang the entire membership of S4ME. And they have delighted in doing so for twenty years.

But I see this as an unnecessary semantic quibble. In medicine just as in ordinary life we have concepts for realities, and also concepts for things that are speculative. The term 'concept' is used for both the idea and the thing much of the time. It is used in discussions of how we are...

Thanks, yes that makes sense. I find it hard to believe that having an illness like ME/CFS would alter connections of the hypothalamus very much. I may be wrong but it is hard to see how that would work. What might be more interesting would be the possibility that if your hypothalamus develops...

Will the acupuncturists share the same Needles?

I can't bear to look. Turn of the Screw? Or more Transylvanian toothmark stuff? One thing is for certain, nothing new in twenty years. Interesting that the Guardian publishes these. All very fair and Polly Toynbee? Maybe the Times has decided to take a firmer editorial position. I never...

Well, so far that approach on the part of patients and 'ME expert' physicians has led to decades of ridicule as you know. Maybe it would be a good idea to talk the language of medicine about the illness rather than using terms that will ensure that ridicule continues for a few more decades. It...

The linguistics of 'concept' is hardly detail!

I guess it is directed at people who have developed an understanding of how biomedical science works or want to. In that context I cannot see how there can be a problem since I make it absolutely clear what the concept is referring to. That is both something real - a group of patients - and the...

I think maybe you are missing the whole point of the article?

I think you may have misinterpreted my sentence. ME presumed a single process of a specific, defined neurological sort (encephalomyelitis) that we have no evidence for because it was inferred from a completely different illness - acute Royal Free Disease.