Esther12
Senior Member
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...having read the QMUL response are they suggesting the request for data release includes recorded patient interviews/therapy sessions? Is this where the sticking point lies?
The ME/CFS community and researchers only want the numerical data for analysis, which is obviously easy to anonymise - but if the PACE team distort this request by suggesting release of data includes highly personal and identifying audio recordings then they have a good excuse to refuse the release of data on the grounds of patient confidentiality.
The data release request published is very precise in what data it is asking for - maybe, to avoid (deliberate?) confusion they need to stress what data they are not requesting.
Easy to be confused when QMUL churn out nonsense. It was clearly only the anonymised data which was requested, and QMUL are trying to claim this is personal data which cannot be annonymised in order to avoid releasing it. Bizarrely, PACE previously lost some recordings of patient therapy sessions but Prof White claimed that this was not personal data, and patients did not need to be informed about the loss.
According to the ISRCTN Registry ISRCTN54285094 ( PACE)(sorry I can't post links yet)
Overall trial start date
14/06/2004
Overall trial end date
01/07/2011
(sorry I can't post links yet)
Do those dates mean anything?
The PACE trail paper with one year follow up was: Published Online: 18 February 2011
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
Maybe the above is dates for 2.5 year follow-up?