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Once the data have been released, I don't see why we would need to get permission. The reanalysis of PACE was done, presumably, without permission.

A further update. I have been dealing with one authority and the point of contact there has been really helpful and thanked me for bringing the lack of publication to their attention. It seems that UoB has joint authority and is the one saying that there needs to be guidance from the ICO. In...

I do think his response was revealing. First, that the redefinition of ME as chronic fatigue and so essentially 'mental health' has been successful and is a key part of what has happened over the last 30 years. Second, much of the problems we have had in exposing the CBT-GET science as flawed is...

He discussed the trial with several of us last year. I don't really want to start another big discussion with him about it. I don't think it does us favours to carry on with the subject. He's not going to change his mind. I just spotted that tweet of his about blinding and thought it showed a...

Hehe. Maybe. The authority I have been dealing with has been very good. I think if the ICO clears the release, then we'll get it promptly.

I have received an update and they are going to refer the matter to the ICO because one of the responsible authorities (University of Bristol) is concerned that patients could be identified, 'as the study sample size was so small and from a relatively small geographic and temporal space...

I think that is a good idea and one I'd be interested in pursuing. I think it could include a discussion of the file-drawer effect in general and on ME research, and something on access to data. See update below.

https://www.nature.com/articles/s41586-020-1951-3 Only in mice and monkeys but quite interesting that they are flushing out a latent virus. And great if they can use it to eliminate HIV as well, of course.

He may not have enough time to look at it. I think that's his usual excuse.

OK, thanks. They did say they'd get the complete set for me by the end of the month, but we'll see.

It seems they couldn't get anyone to publish it. It would have been stuck in a drawer if I hadn't asked for the data. As far as you can tell, does that look like the full anonymized data?

I have continued chasing up these data. They were going to publish and going to publish and going to publish. The contact was really helpful and thanked me for continuing to bring the matter to their attention. It seems these data have finally been released and are available here. I've had a...

https://onlinelibrary.wiley.com/doi/abs/10.1111/cpsp.12312

Just to clarify my position again. I responded to this: . I think they are an acceptable treatment for subjective conditions, if they can be shown to be effective. I'm not saying they are effective. I'm certainly not saying that ME is a subjective condition.

Then we agree. I am not saying that it does, only that if it does. Though interestingly in that study the subjective reaction to pain matched the objective: neither rates of epidural analgesia nor experience of pain in labour or clinical outcomes varied.

That does of course apply to all forms of pain relief. And is an issue with sports people, particularly for those where a team may want to give painkillers to a major player for a big competition.

Fair enough. I do accept that there are problems in working out whether something genuinely is having an effect or not. And there is a problem of definition. My point though is that for addressing the feeling of something, a subjective outcome is sufficient. If it can be shown an intervention...

Well, yes, that's a legitimate concern. But it doesn't detract from the point that the placebo is legitimate. All interventions can cause harm and must be used with consideration for all factors.

Oh, that's brilliant.

Yes, exactly. The whole point is that they redefined ME as 'fatigue'. They then tried to address this subjective symptom. PACE showed first that they're not actually much good at combating the subjective fatigue and second that ME is not a subjective condition because even in those patients who...