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I have vague memories of an article about a harpist with ME appearing a year or so ago.

Even if they are connected it is irrelevant. Lord Winston is part of the medical establishment who seemed to be believing the PACE trial unconditionally and being fed what to say. I suspect now more concerns have been raised, the data has shown results were spun and there are peer reviewed...

That was just my interpretation. But it doesn't look good and I'm amazed that a modern organisation would attempt to use such an excuse. In truth I don't think the data is hard to understand and I suspect a decent data scientist could unravel it in a relatively short time. Especially in terms...

That doesn't surprise me. But their continued covering for PACE doesn't paint them in a good light. The way I see it is QMUL were the responsible institution and need to demonstrate that they are capable of an appropriate level of governance.

I took that to mean they have the raw data but the knowledge to interpret it has gone. That is a suggestion that they have not documented their database, the schemas, what the different data fields are. Either case suggest that QMUL are a highly unprofessional organisation (but that doesn't...

He should not be have the ability to do that. If that happened it would show QMUL had failed in their governance of the project.

Yes I was reading one book that talked about companies preferring arbitration than going to court because the arbitrators tend to be experts. But the ICO should be experts information so they should have more of a clue.

I think that is a requirement from the MRC now. Not sure if it was at that point. Also data sharing policies need to be set early on,

Also the costs on actiwatch are listed (and software) which they then abandoned as an outcome.

With another FoI request by @Anna Wood QMUL claimed they would need to hire a statistician to perform the task and again the ICO believed them. Once data was released it took me less than 2 hours to work out the information and that included interpreting their recovery criteria and checking the...

They have a tactical clinical trials data storage unit that cover stata and SPSS. http://www.its.qmul.ac.uk/services/catalogue/items/142820.html They also have licences for SPSS http://www.its.qmul.ac.uk/services/catalogue/items/143153.html The data was (according to the stats plan also...

I think this is a serious admission by QMUL it suggests they do not have an adaquate data management policy to support clinical trials. The spent 5m on this trial and they claim the data is so badly stored and documented that it can no longer be used. That should be considered unacceptable. The...

There could be a signalling storm where some signals in the brain disrupt a process and lead to other signals being sent out into the body to control metabolic processes etc. I've often thought of ME as a control system failure where there are lots of dynamic loops with one breaking and then...

@Simon M Any ideas on this?

I believe it affects the HPA access but the also there are effects in the brain (Wiki mentions a alpha, beta and gamma type) so I think (but I really don't know what I am talking about!) there could be other effects as well a part from HPA

I think its interesting. We've talked about ME being caused by faulty signaling mechanisms (either bad signals or receptors not working) so this looks to be along those lines. But I've no real idea about it. I assume they need some form of evidence before a trial which I assume comes from...

I agree with this. My belief is that the overrode the protocol by getting the stats plan approved (and the stats plan doesn't discuss why changes were made). My guess is that they never got explicit approval for the protocol changes but their claims are based on approvals of the stats plan...

I think some in the Lords had more of an interest in that they are part of that medical community. I think Lord Winston was one. But not sure about MPs apart from the doctor who heads the health select committee who may be supportive of the BPS approaches.

When there was a House of Lords debate on PACE it was clear that several members had been heavily briefed by the PACE team leading to them making inaccurate statements as the accepted all the spin. I would expect similar this time but with peer reviewed criticism now published its harder for...

I think there is another whole area around PACE that needs addressing which is its use to justify a MUS approach. I think there was a slide set recently being discussed by Kings and others which referred to a 22% recovery with CBT which they didn't reference back to PACE but its the likely...