Andrew,
Thank you for continuing to delve into the mirk. Having previously appeared to give succour to those determined that PACE must die, you should prepare yourself for a rapid fall in popularity amongst that constituency. As you identify the issue of greatest concern is the lack of open data – and the protestations that it’s all about blinding, ring very hollow, given that Professor White has recently called for all UK Universities to be exempt from Freedom of Information legisaltion, the very legislation upon which UK citizens rely to get access to data which those Universities, as with QMUL feel free obfuscate.
Open data is a matter of international concern, in the case of PACE there is also a more parochial issue and that is the way that a particular school of psychological research, with backroom support from NHS management, is using the vastly overstated value of PACE to continue garnering research funding in order to flog the dead horse of CBT/GET into a shape sellable to patients. In this scenario we aren’t looking at simply finessing research which has limited scope into something with wider application, but a use of scarce funding to back researcher prediliction. ME/CFS patients almost universally have well established differences of perspective from Professors, Wessely, Sharpe, White and Chalder and want their health service to value their voices at least as strongly as any academically derived weak evidence base. There isn’t a methodological solution for that problem, ultimately a social and political solution is required.
