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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...

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 what was said. Kristian's talk was interesting in that he was explaining what the BioBank do (the one collecting genome info from 500,000 people not...

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 and said that we wrote as a forum expressing interest in being involved. I sometimes get the impression that many in medical research (and Cochrane)...

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 worked for them. Although people talk of pacing when I've seen discussions I think different people have different approaches. So sharing different things...

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 mistakes remain published.

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 being told that no harm is possible and then not recording or following up outcomes. It is clear from patient leaflets that risks are not discussed and...

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 objectives. Made worse by the way the review was carried out.

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 definition of recovery which they can explicitly talk about which goes towards their implicit definition.

The positive prediction rate which is the proportion of positive classifications (which I assume to be CFS) which are correct is interesting in that it goes up on the second day - even though overall accuracy falls. The negative prediction rate falls. This seems to suggest that on the second day...

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.