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I think there has been previous work on blood flow through capillaries in the brain and also on the shape of red blood cells. So I suspect that Ron picked up on things that had been talked about a bit and tested them. But what is interesting is the testing he has done. What he is basically...

It would be good to see the data here. What is also interesting is that there seem to be a set of measures that seem to fit rather than just one. Also I was just watching a video on microfluidics and I get the impression that chips to do this (micro fluidics not Ron's test) are relatively easy...

Isn't the question more one of is there a reliable way for them to demonstrate the safety of GET. This requires them to show that adaquate information about safety is collected currently. So for example, even in PACE that tried to collect safety information there are issues in the way it was...

I think Tony is very good on these issues.

Pace did have some doctor based evaluations and I think for the CGI score they substituted in the assessors value when the patients value was missing.

The statement is interesting since it says selection needs to compare with treatments including "adaptive pacing therapy" which was a treatment made up especially for the pace trial. So they appear to have looked at available trials and then written the selection criteria to pick ones they want...

Thanks for reminding me. I had completely forgotten. I will try to put something together tonight or tomorrow.

The RCP has the job of recruiting the NICE committee so nice to see they are good at recruitment.

Someone else noticed there was an update saying there was a note so I looked around until I found one but it took a while.

Many reviews just use published results.

That makes a review quicker as there is no data to review? Some have objective data though such as PACE has the 6mwt.

Are they open to that?

I think it depends on whether Cochrane take a short or long term view. In the short term they can cover up and brush the issues under the carpet which is what they have done up until now. But they can't do this forever. Pushing the issues out into the open is interesting because they cannot...

There appears to be a note on the end on the full pdf now https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/media/CDSR/CD003200/CD003200.pdf Note

I suspect it is the same person as both are in Birmingham. Its very worrying reading the transcript he basically used the child protection system to enforce psychological treatment on a child with ME. This was something we raised as an issue in our response to the scoping document.

My concern would be if they have the lawyers threatening Cochrane which is the type of thing the PACE team would do or it felt like they did against PLoS to prevent the withdrawal of their paper.

It perhaps shows the issues of charities interacting with research in that they don't necessarily have the skills to analyse the methodology. There are issues raised with APT in pace both in terms of it doesn't describe what people mean by pacing and that pacing is not a therapy but a strategy...

I always thought that the best way of fundraising was to try to get regular giving so that gives some sort of predictable income. The 3-1 seems to go against this and perhaps encourages people to give more that they can afford.

I think one of the things that @arewenearlythereyet is saying is that when raising money it would be good for the fundraising adverts to be clearer about how the money will be used. I think that is good advice even if it is just a pointer to other places where it is explained. OMF are quite...

I wonder if it is worth looking at this from a data protection and privacy angle and potentially complaining the ICO. Personal data was collected as part of the trial and used but the trial was coercive in that it was looking at school non-attenders and hence there would have been a lot of...