OK, here’s my take on the Freedom of Information Refusal Notice which came out a couple of days ago, not to be confused with the Tribunal outcome which (as I write) is expected imminently. Apologies for the fact that it’s about twice as long as it should be but I now have brain fog so I don’t have the intellect to edit it down! If you manage to read it, I hope you find it of interest. Me, I’m going to get some sleep….
The latest PACE Trial Freedom of Information Refusal Notice causes particular concern, not only for the PACE Trial and its implications for the future prospects of people with ME/CFS, but also for the Freedom of Information Act itself – and even for freedom of speech. The Notice incorporates twelve pages of repetitive arguments from QMUL (Queen Mary University of London, home of the PACE Trial) and three pages of what seem to me to be concise and clearly argued response from ‘the complainant’ (i.e. the guy who has made the request for information). Unfortunately, the Commissioner then goes on to reject the latter in favour of the former, apparently believing every word that QMUL have told him, i.e. that patients have launched a concerted campaign to discredit the PACE Trial by submitting a burdensome number of FOI requests in the desperate hope of finding something wrong with it and in the meantime bringing Lead PACE Investigator Prof Peter White and his staff to their knees under the resultant administrative load so that they aren’t able to do any more of their vital research. Or something like that. Their evidence is not so much a linear argument as a trip several times round the houses in the hope that if they say the same things often enough, some of them will eventually convince the Commissioner. Unfortunately, this strategy appears to have been successful.
The information the complainant requested relates to the data from the step test, an objective outcome measure which went unreported in the original PACE report but appeared in the form of a small scale graph in an appendix to one of the follow up studies. Continue reading “Closing the Door on Freedom”