“The bigger picture and why all of this matters

The PACE trial has had a severely adverse effect on the treatment of many ME patients all over the world. This particular Tribunal case is of unusual significance for reasons explained above. Judging by the viewing figures on this blog, people from many different countries are following its progress.

This Tribunal hearing broadly encompasses issues of law, media, transparency/open justice, science/academia, ethics, data sharing and – perhaps most important of all – the ever-increasing trend towards open data. It could quite reasonably be argued that, where a particular study is unusually controversial, the best way of addressing the issue is to make all the data available, with redaction/anonymisation where appropriate. If that were to happen, then all the interested parties could participate in the debate on an equal footing and in a properly-informed manner.

In the five years since the publication of the PACE trial, I have counted at least ten different sections of FOIA which have been used by the trial’s authors as reasons for not disclosing information. On any view, that seems a little excessive.” Valerie Eliot Smith