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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.

Having looks at some of the ONS data for sf36 I would be worried that it is not really comparable when looking at people with different severity. I did a cluster analysis looking at how question answers clustered around different scores and the mid scores were a mess in terms of which...

I think the thing about validating scales and what it means to validate a scale is more down to a lack of systematic logical thinking and asking the question of what are the properties of a scale necessary for a given experiment and what evidence is there to validate that the scale has those...

Not only do you have to validate it against something you know you have to validate different properties and in doing so understand what properties you are relying on. But there is no understanding of what different properties of a scale may be in this community. I don't think its post truth...

I think it means that be believes that if a scale is validated and/or in an important area for patients or doctors then it is not subject to reporting biases. This doesn't make sense. Perhaps what he really means is everyone does it and others who follow this pattern of behaviour think it is...

I think one of the really critical things is how easy are criteria to operationalize and thus being simple is important. This includes things like having clear definitions of things or questions to ask. Jason is one of the few to have done work in this area but to me it is critical. I think...

I think the phone thing could be interesting. I believe in the UK those in rented accommodation and poorer people tend to be less likely to have a fixed phone line, relying on mobiles instead. I assume that the phone numbers were land lines?

I think that some research to try to describe fatigue better and in different diseases would be good.

His papers are vague with jumps in reasoning and language that can be reinterpreted. But that is what should be taken apart in his work as in science there is no place for such practice.

I think there is value in that this cohort could be used to help select smaller sets. This may be particularly the case if there are potential subtypes due to different genes which could lead to researching into different mechanisms. Or be used for epidemiology studies (such as the one norwegen...

Perhaps she watched inside out over christmas?

The symptoms probably mirror the deep trauma that people suffered during their childhood? So if you went to a party and played blind mans buff or pin the tail on the donkey the trauma would cause functional blindness?

I suspect it is a general discussion. But it depends on what you are using the sf-36 for. It can be a rough guide to the level of disability and interesting to look at individual answers. Where I think it fails is in using the differences as a measure of improvement because it certainly isn't...