Search results

That part yes, but the analysis of the data would require both detailed clinical insight and high level mathematical method knowledge.

I think Fluge and Bella have tried to make a start on this. But you need investigators who understand the point of the exercise. I often wonder if anyone not a member of S4ME has that understanding. We are beginning to see young scientists who want to get to grips with ME/CFS but as for...

From reading the threads I would say it was no where near as stereotyped as that. And what is 'a certain threshold'? Is it defined in a circular fashion as that which gives PEM? In my article I make it clear that something about the time course of worsening is what makes ME/CFS a concept that...

Why, set up an exemplar clinical unit of course!

Traditionally it was the norm. We all know the centre names: Brompton, Queen Square, Rheumatic Diseases at Bath, Birmingham Accident Unit, Royal National Orthopaedic. Almost all trainees in a specialty wanting to become consultants worked for a year or more in these exemplar units. Then in the...

I was thinking of that when I wrote that! A surprising number of people volunteer for 2 dy CPET studies it seems. But the studies never seem to test for what symptoms people have after day 1. If I had bad PEM I would say no thinks to day 2. But I wouldn't recommend that approach anyway. The...

I was specifically referring to the idea that anaerobic thresholds are crucial. I don't think we have any evidence for that. More generally a reduction in output on CPET on day 2 is interesting but we don't have good reason to think it is what makes people feel worse.

I haven't heard that other than from on for two members. Sleep and lying flat course make a face puffy from a combination of gravity and immobility.

Yup. We use UV to study vascular activation this way. The skin goes red after a few hours, like sunburn.

Are we sure this is not sleepiness. Sleepiness with car vibration is surely something lots of people are familiar with. Both I and my wife fall asleep in a vibrating car but not in a train. The sleepiness is irresistible but nothing to do with tiredness. And of course some people feel sick with...

This is the nub.

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...