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I heard something on the radio suggesting that some of the cheap masks were not very useful as the virus would get through the holes in the material. But the masks normally used in healthcare would be useful. So there may be a question of what material to use.

I don't think its derailing the thread in that it was a talk given at the conference and there was some discussion about the various existing data sources that could be used for this work (including the twins UK project). To me its about looking for commonalities and differences for fatigue in...

I think these questions are one of the reasons why it is worth comparing fatigue in different diseases especially if there are specialists from the other diseases that have data and are doing the studies. The type of thing that Frances Williams was talking about was using the existing data to do...

One of the things she is suggesting (I think) is that cohorts with fatigue should be used in comparison to PwME and has pointed out various different sources of data including twin study data. One thing that was being discussed is the notion that if you look at fatigue in general and then look...

I think this is a key point. This process has been seen to be influencial to research funding in other diseases. I think it is one that the NIHR and MRC take seriously. So if it gets things wrong then that could be a bad thing for the direction of future research. Hence I think it is important...

The idea behind the PsP is to collect the priorities of the things that patients most care about rather than those things the researchers want to do. It should give a balance to a researcher view who can get too carried away with the latest techniques, theories or research aspects of a disease...

She talked about some of the real issues in creating a biobank in Australia where a large part of the population is very geographically spread. But they are using a tele-presence based nurse service to help with things like diagnosis. Also the pathology labs setup for blood testing is different...

I certainly got the impression that they don't see patients as people who understand research. Although I did start a question by pointing out to them that it took a patient to tear holes in their analysis and they resisted doing anything about that for many years. I also got the impression...

Nina's talk was great (even though there were some computer issues at first). Nina is doing a really good job at trying to address the poor state of medical education and look at how little doctors know but also to look at what information they need to know and she is also doing various talks...

That wasn't mentioned. They don't really get it. I think the thing missed of was around selection criteria

This was a really good video that they have done which I believe is online. They talk about the 2 day CPET test and what it means for PEM as well as some patients. Talking with a couple of researchers afterwards they were saying it made the issue really clear. So I suspect this will be a...

This was interesting in that they are managing to build collaborations between various teams and fund smaller projects. One of the interesting points made was that they are doing things to help get young researchers involved such as including them as joint PIs in projects and also providing...