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I keep wondering who this Topol guy is. (Presumably not who played Fiddler on the Roof.) Is he just an AI bot that tweets anything trite? What is his viewpoint on this - he doesn't seem to have one except wanting to tweet all the time? Have I missed something?

I think your concerns are very realistic. Natural mutation is a bit like randomly changing a letter in a Shakespeare sonnet. 99.999% of the time what you get is a sonnet that isn't quite right and gets replaced by a correct version. Deliberate human mutation is more like deliberately changing a...

The Wikipedia article gives what looks like a reasonable history. Ever since viral genomes have been sequenced and can be altered presumably people have been tinkering with them - maybe for fifteen years. The implications are that at any time a deliberate mutation may prove to generate a virus...

That result looks very odd. There seems to be about a threefold increase in risk for a whole range of unrelated disorders. Ankylosing spondylitis is not an autoimmune disease and is largely genetically determined, for instance. I strongly suspect that they picking up on some systematic bias...

This basically says that we discovered that there are five popular ways to bullshit to patients. We recommend teaching these to the students. I would like to know how someone like Chris Burton, capable of writing this sort of pernicious nonsense, was considered suitable for the NICE committee...

But why? When I started out in rheumatology to study rheumatoid arthritis RA patients were routinely seen every three months for years and years and we had no really useful treatments. Diagnosis was made on history and physical examination. Blood test told us about complications and things but...

I don't see anything very interesting here. People have been measuring hundreds of molecules in blood samples for decades now - omics. And it hasn't proven terribly useful as far as I know. I don't see any great advantage in doing it on a drop of blood. Getting 20ml of blood is in my experience...

Of course but my point was 'where are the patients being involved in this institute?'. I am not suggesting that patients pay to be involved. I had hoped to make that clear by saying that they should not be affected by financial conflict of interest. Their being looked after at the institute...

I am afraid that I really don't think there is. We have some 2 day CPET studies that remain pretty hard to interpret in terms of relevance to PEM and mechanisms. I don't know of anything else substantiated. Various findings get published but rarely get reproduced and none have been tied together...

Precisely, we don't know. I am not denying that I agree that ME deserves a separate category. I do. But for the CDC to argue that the weakness of trials relate to patient selection when in fact it relates to the poor methodology of assessment, lays it open to anyone in the medical profession to...

I don't think it is that easy. People with tuberculosis with a cough, rather than spinal deformity do not get a separate diagnostic category necessarily. The difference has important implications for treatment but that is a different issue. I didn't put it like that, that was Dr Souhami's...

I think one could also make a case for EAE being inhumane and having not made much difference to the development of understanding of MS. I have never been sure what it told us if anything. It is pretty cruel.

My question would be, in a different sense, 'where are the patients? Research into disease mechanism and treatment has to be based on physicians acquiring a deep understanding of the natural history of the illness - in other words what it is like day in, day out, year in, year out, for people...

I strongly suspect you are right, even if I cannot prove it,

There are potential problems but if the study is perfectly conducted and gives a positive result the assumption is that it is applicable unless there is a well argued reason not. There may well be but we know so little that we cannot be sure. That leaves the door wide open for those with other...

The nail on the head.

To me this is mincing words. I would like to see something much more rigorous. It is not that the strength of evidence supporting CBT is low. It is that it is not good enough to use for clinical policy and if anything the most plausible analysis is that CBT doesn't work. I think it is...

The working group was convened by the government, as I understand it. I am merely one member. However, I have suggested that interested members might want to look at relevant S4ME threads. I intend to take a very hard line if it comes to recommendations that might be misguided in the way you...

Well I do, Adrian does, and I suspect some others do, but it hasn't been discussed directly.

@Simon M , The research working group was considering outcome measures for ME trials. Someone asked what was the view on SF36 n that context. Clearly there are lots o questions about what the trial is designed to show etc. but I think SF36 was raised in the context of a measure of 'function' or...