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The UK Biobank seems to be a useful resource as far as I can see. However, any data gathering project based self-registration through the net has major disadvantages in comparison to traditional population based epidemiological studies. I continue to have significant concerns about cohort bias...

The comment re Lyme was from an ME association and I have no view on that. The political aspects for me are more general.

Absolutely agree, but NICE has come close to changing things by debarring the 'international experts' from contributing and making use of the common sense of citizen scientists. The key point is that science does not come from those who share a received wisdom, but from those who are one step...

Yes but you cannot convince stupid people of what makes sense. They don't follow. And they are in the majority. I was there for thirty years! You don;'t do things this way. As the saying goes if you want something done best do it yourself. NIHR was specifically set up to lower the standards...

I give up really. Everything is drivel now. Stakeholder is a completely inappropriate term in this context. There are people who need help and people who might be able to help given the opportunity and a whole load of people with vested interests getting in the way. There is no commonality...

I am afraid, @Hutan, that this: “We have brought together experts from across the UK to work with international colleagues from the World Health Organisation and large international COVID studies, such as the ISARIC consortium, to achieve consensus on the design of research studies addressing...

For once I agree with @duncan. The allofus.nih.gov webpage looks like pure politics to me. I cannot see any point in PWME contributing to a project that is not properly epidemiologically structured. This looks like simple window dressing driven by some people building empires in 'precision...

There is a medical sense of that sort - as in so-called fatigue-fracture when the shin bone cracks after repeated use. But I think that just illustrates how many different usages there are. There may be a lot of confusion over ME symptoms but for both patients and doctors fatigue is a symptom...

You seem to be missing the point @Snow Leopard that language is messy and complicated. In science terms of have multiple meanings in different language structure contexts. Yes, of course the root fatigue- is used for the sorts of phenomena you describe and as a compound noun like peripheral...

This reads like someone who has read an immunology textbook but not understood it. I may be getting old but in the days when I was in immunology an abstract like this would get a straight rejection. The sentences aren't even in a sensible order. 'monocytes were sorted from PASC patients using...

This is not the meaning of fatigue relevant to ME and I doubt you would get many doctors to agree that it is relevant.

Hydrostatic pressure in relaxed muscle should be slightly below atmospheric. That suggests to me that the pressures here are indications of muscle contraction. It would not be surprising if people with a diagnosis of fibromyalgia contracted the trapezius harder when a needle was stuck in.

It looks like the second references really Saffron and Pheby, 2009? It may be good paper but the quote is a bit confusing.

I not that the opening blurb refers to paper by Alison Wearden and Caroline Chew-Graham. It goes on to cite: Without a diagnosis, patients can experience more severe symptoms and develop unhelpful illness beliefs or management styles, which then become entrenched making any subsequent treatment...

I get the strong impression that therapists just find it too hard to let go of the idea that they know what to advise - when nobody does. As far as I can see all that needs to be said to patients is: 1. Exercise is not going to make you better and may make you worse. 2. Once you ARE better...

It may be. But did they tell the patients that it was? Or did they assume the patients had read Dittner? Psychotic patients in hospitals mostly watch telly or sit around doing nothing much so any tired ness would be unlikely to be a result of exertion.

Chris cross-checked with the UK Biobank data and found no signal.

Being in hospital is exhausting for anyone in a reasonably normal frame of mind so 60% seems a remarkably low figure, but then by definition people with psychosis are not in a normal frame of mind and it is difficult to know how to interpret anything they say about themselves. So I think it...

I think we need to know that anti-CD38 is useful in a disease with known autoantibodies before playing with it in one that doesn't.

We did and Chris Ponting gave a useful commentary. The results were not replicated.