This is an excellent idea of Clark’s (reprinted from his blog): a way of making our feelings known about the release of the PACE Trial data. Please consider joining in.
I recently wrote about the Freedom of Information (FOI) request that the Information Commissioner upheld, ordering Queen Mary University of London (QMUL) to release the data requested from the PACE trial. I provided an example of exactly what data was requested to demonstrate that the release would not include any personal identifiers of patients from the trial. I also highlighted the scaremongering of the PACE authors and their institutions that is misleading people into thinking the data is personal data when it is not. Before that, I wrote about why we must be allowed to see the data.
QMUL released a statement about the case, stating that they were seeking advice of patients, but they have not explained how this advice is going to be sought or under what conditions.
Many ME/CFS patients will obviously want to have their opinions taken into account. It is clearly a matter that patients…
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