Tom Kindlon
Senior Member
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From the minutes of the Forward M.E. meeting held at the House of Lords on 10 June are nowavailable to view and download online.
http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/forward-me-10-jun-14.pdf
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I believe the most likely reason for this behaviour is that PD White is concerned that if others get the data, they will see a different version of the results to what has been presented e.g. that the recovery rate as defined in the published protocol would be, percentage-wise, in (say) single figures.
This isn't the only example of attempt to refuse to release the data - numerous freedom of information act requests have been refused.
I don't think PD White and the PACE Trial team should be rewarded for their behaviour by people giving up trying to get the data. Instead, I think it should encourage people to try even harder to ensure the data is released. This trial cost £5m of public money. As the statistical analysis plan said, it was supposed to be a "definitive" trial. In this era of open data, the investigators should not be allowed continue with all the attempts they have made to refuse to release data such as their refusal to release the data on the recovery definition as described in their own published protocol (not the ridiculous definition they published on where people could be classed as recovered with a SF-36 physical functioning score of 60, less than the trial entry criterion!)
http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/forward-me-10-jun-14.pdf
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---5.1 The Chairman said Professor Peter White had been asked by K Geraghty for raw data from the PACE trial and that Prof White had complained to the enquirer’s university about "harassment". Should we do anything about this? Dr Charles Shepherd said that we had not seen the exchange of e-mails so it was difficult to comment. The Chairman proposed that she would ask to see the e-mails. If necessary we could then take the matter further. This was agreed
I believe the most likely reason for this behaviour is that PD White is concerned that if others get the data, they will see a different version of the results to what has been presented e.g. that the recovery rate as defined in the published protocol would be, percentage-wise, in (say) single figures.
This isn't the only example of attempt to refuse to release the data - numerous freedom of information act requests have been refused.
I don't think PD White and the PACE Trial team should be rewarded for their behaviour by people giving up trying to get the data. Instead, I think it should encourage people to try even harder to ensure the data is released. This trial cost £5m of public money. As the statistical analysis plan said, it was supposed to be a "definitive" trial. In this era of open data, the investigators should not be allowed continue with all the attempts they have made to refuse to release data such as their refusal to release the data on the recovery definition as described in their own published protocol (not the ridiculous definition they published on where people could be classed as recovered with a SF-36 physical functioning score of 60, less than the trial entry criterion!)