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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?

I believe you are doing home collection of blood samples. Does that mean that you are getting collections from severe patients? Also as you collect blood have you considered potential effects due to patient exertion prior to the blood being drawn, does home collection help here?

Can you tell us anything about the types of analyses that are planned and the numbers of patients that would be involved?

Is the ME Biobank done in conjunction with other BioBanks so that data can be compared across different populations of people with chronic illnesses. Would this help pull out things that may be due to inactivity vs particular signals for ME?

I have a further question relating to this study. One of the things they seemed to be reporting was differences between fresh and frozen samples. Could this be an issue for the biobank and have you looked at it?

I assume that the longitudinal study is aimed at looking for correlations between changes in peoples reported symptom level and blood markers over time? In doing this does this allow people to be references to themselves in terms of blood markers? And hence pick out potentially important...

It's not clear that there were harms in the patients that were followed up (or at least more than other groups). I think the other groups caught up with the GET/CBT groups over time. The released data didn't seem to suggest harms being recorded in the GET group. But the issue here is what is not...