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...
I think these questions are one of the reasons why it is worth comparing fatigue in different diseases especially if there are specialists from...
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...
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...
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...
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....
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...
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...
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...
This was interesting in that they are managing to build collaborations between various teams and fund smaller projects. One of the interesting...
Chris ran through the GWAS study which will be familiar to those who have followed the GWAS threads and Simon's blogs I think they cover most of...
I've been at the meeting today and wasn't impressed by Cochrane. I made the point to Richard that he should have tried to involve patients earlier...
I wonder if a good way to give advice on pacing would be to have a series of short pieces from a range of patients describing approaches that...
Which just demonstrates a big weakness for Cochrane. It shows that there is no editorial control as the authors ultimately have power to decide if...
I think the Harm paper that Graham and others wrote shows that this is not being done for patients with GET in part because practitioners are...
Perhaps they can influence the review protocol since it is the way the review was based on meaningless numbers that was one of the real...
There problem is they have an implicit definition of recovery which is "gone through a treatment program" but they find it difficult to find a...
The positive prediction rate which is the proportion of positive classifications (which I assume to be CFS) which are correct is interesting in...
Given their very small data set this doesn't surprise me but if they had more data other classification techniques may start to show better results.
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