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I've read a few of Wessely's papers and they always struck me as having logical inconsistencies of big jumps in reasoning. I did think if someone were to formalize the arguments being made then they would become obvious. It can be a case of style over substance - there is a reason maths is the...

My point was for trials like PACE which basically had poor results and a meaningless methodology gives a more obvious reason to dismiss results than a discussion over criteria which will always remain somewhat subjective because we have no understanding of disease mechanism. Do they? Does that...

The poll also relates to comments produced for the NIH-CDC consultation which are posted here https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-concerns-with-the-proposed-measure-of-post-exertional-malaise.2220/ Thanks to @Simon M and others.

Yes it went in a couple of days ago but the team wanted time to write up a summary to post and deal with Leonard Jason's comments. After the rush to get the commentary done (and process the survey results) that took a little while.

It may also be the location of the comment. He probably only cares about how certain groups of professionals view him and his image so commenting on a blog is safe but writing to nature is a different thing. I get the impression he does back channel lobbying of journalists.

In terms of excluding Oxford criteria papers. I'm not sure the case is clear in fact I think I'm against it. The studies using Oxford tend to be poor quality and hence have better results on subjective outcomes but the argument should be about the methodology not the inclusion criteria. If we...

I always took the not life long to mean it developed at some point and wasn't present at birth. I think it is also the case that not all the people at that meeting or involved in the guidelines were of the opinion that ME is psychosomatic.

Lets hope they can cash it in quickly if its in bitcoin as the value is very volatile. But his is great news and demonstrates the value of thanking people who do good work or help the ME community. We are often quick to criticism the bad actions and I think this demonstrates that we can also be...

If this is an organisation touting for work they are really misleading. They are quoting PACE recovery measures (20% White 2013) and also Sharpe's long term follow up paper for PACE where there were no significant differences between the groups but they quote the "improvement maintained" headline.

I would suspect that it means that they have space in the RCP offices which probably means similar views are exhibited. That's concerning.

Given the biggest trial in the GET Cochrane meta analysis is PACE there comment about other evidence is misleading. Cochrane rated PACE as high quality evidence and included it in a meta analysis with small trials (that make similar methodological mistakes) so Cochrane cannot be considered as...

I do wonder if a complaint to the ethics committees would be a good idea. I think the Exeter ethic committee acted inappropriately in converting a feasibility study to a full trial (and doing so via a subcommittee of 2 people). I think the ethics committee should have bounced the changes and...

Which is concerning for people who find it hard to describe symptoms. I wonder how many they fail to diagnose due to not asking and patients having normalized additional symptoms.

@Leonard Jason has made a comment here around patients looking at PEM https://www.linkedin.com/pulse/pem-patient-poll-soon-released-leonard-jason/?published=t Starts with:

There could be some interesting stuff on mental function and cognitive ability in terms of measuring change but I think producing the right tests to capture issues will require a lot of research.

Sounds right to me. I do come at it from more of an engineering or maths background hence perhaps I worry about the properties. Not that I know of. It could be argued that there is nothing as simple as fatigueness that can be measured (not as a simple measure such as temperature). But if there...

Originally they talked about quoting the two scores separately and as a combined score.

The stats (quoting mean and sd) assume that the scale is linear otherwise if it is ordered (ordinal scale) then the median and MAD can be used. If not (as I think is the case for the CFQ) only the mode should be given. When comparing improvements you cannot do that if an improvement of 1 point...

Good points. I think there is a real problem in the medical world in terms of how questionnaires are structured. They don't seem to understand the basic principles that are well known in say the marketing literature. Too often they label scales as 'likert' scales because they use likert item...

Basically looks like a null result? They talk of small non-significant differences. But still interesting to see what they have looked at,