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At the end of the article he refers to a COPE document https://publicationethics.org/files/u7140/COPE%20Forum%20Agenda%20and%20materials%2013_11_17_FINAL_2.pdf which I though summarised the issue of having no ethical permission for trialling service innovations in a very poor way that is...

I think that is what I am getting at but they could have just used a guess.

I have the impression that this group have hyped up tests before when they were on small samples. But perhaps this is a repeat of the same hype.

But there is a principle that you look at techniques and make an assessment about whether they are likely to work and hence worth testing. LP is not really credible but given its technique it is likely patients will claim it helps. There is no science behind NLP. The LP talks about Adrenalin...

A question: We have seen a number of small scale studies over the years looking for biomarkers including immune system studies and brain scans. There are a few bigger studies as well. Which of the results do you think may be interesting in terms of potential to show core mechanisms and hence...

One of the things I was wondering about were the power calculations and whether they were redone between the feasibility and full trial as this would show that they looked at the data. The paragraph in the trial protocol seemed vague: I believe the power calculation requires some effect size...

It could be true. In that the NIHR (National health research) may have funded some since I think Crawley has a research fellowship with them which is basically funding her wages. The charities seem to have agreed to fund the feasibility study rather that the full thing but there is confusion...

I think there is a further issue which is that the LP needs to be fully described in the paper in terms of whether it encourages symptom denial. If it is not then the reviewers and those relying on the research have no way to assess the methodology against potential biases.

Because people notice if software doesn't work whereas with trials there is obvious way to see the results are spun. Whats more is many companies now offer bug bounties so that critical errors can be found before they lead to security issues. Such actions of detailed analysis would be called...

I think it was funded by a couple of charities funded at least the feasibility study - but then the full trial was just an extension of that. I think the Ashden trust funded £120,000 and the Linbutry trust £44,000...

But they were happy to put their reputations on the line without bothering to find out the details.

We should remember that Dorthy Bishop has for using her reputation to back PACE. She wrote this article basically lumping patients asking for PACE data with climate change deniers and suggesting transparency damages science...

I do wonder if a complaint could be made about the PACE entry into the REF process. They claimed great success and influence and their long term legacy will be as an example of how not to run a trial. The problem seemed to be that REF did not checking on submissions so universities could say...

Psychological Medicine who published the PACE recovery paper aren't members of COPE

I think that we hear of those who are very ill here but there will be a range of different levels of disability.

@The UK ME/CFS Biobank Thankyou for answering questions

How do you find patients. Could we help? Are there questionnaires that are used to select people This question was asked on twitter relating to this "I have filled in numerous questionnaires for the US Solve ME initiative. Do you have an equivalent for finding future patients or to indicate...

Are all the samples from the UK? Do you think there may be differences in different countries and hence should the Biobank be replicated else where (say Japan, US, Australia)?

Are you in touch with the three NIH ME research centers that were anounced and do you share experience of good sample/data collection and schema with them?

As data starts to be collected from various studies on the Biobank data would it be possible to create anonymous datasets that could be shared with the machine learning/data analytics communities so that a wide variety of analytic techniques could be used on the data?