29. Given the very specific nature of the subject matter, QMUL has explained that the requests need to be handled mainly by one person, Professor Peter White who is the lead Co-Principal Investigator of the trial. Whilst Professor White acknowledges the legal responsibility he has to respond to requests, these take him away from other important responsibilities such as providing responses to Parliamentary Questions from both Houses, finalising the publications which remain, oversight of the current trial of a self-help treatment for patients suffering from CFS/ME, oversight of his research into the causes of this condition and undertaking all of his other academic and clinical duties.
30. In addition to Professor White’s input, the requests take up a disproportionate amount of the Records & Information Compliance manager’s time. Handling FOI requests is only part of the role, and with already stretched resources, this represents a further burden especially when the history of requests suggest that these will continue.
The first sentence here makes a claim that only White can handle such requests but note that they give no actual evidence or reason why this might be the case. They seem to have a style of arguing where they state a claim as a fact but with no supporting evidence. The same was true with protocol changes such as changes to the CFQ scoring - they claimed it would give better accuracy but gave no evidence to support that, quoted no papers and gave no analysis. I wonder if they have such an unquestioning culture that they don't understand what it means to provide evidence to support a case. Of course if the TSG questioned and ask for reasons for things they might have got better and designed a better trial.
We know that QMUL has or had IT support for various tools used to hold and process data within this trial so I wonder how the above statement can be true. I suspect that White (as a professor) has little expertise in using the actual tool set and he is not a statistician. To me it creates an image of White sitting in his office closely guarding the PACE data and carefully controlling access to it in case others looked and found what perhaps that the results have been spun.
I wonder how many request to parliamentary questions he has given and how much spin these responses contained? The implication of his statement is as the Co-PI he is the only person able to make pronouncements on the trial. Politicians were sold the line that this was a well run trial with according to Lord Winston "that cognitive behavioural therapy is effective in something like one-fifth of patients" or Baroness Meacher: "Meanwhile, 60% of patients achieve significant improvements in both fatigue and exercise levels after the same period". Would they be shocked to read Tuller's article pointing out some of the faults. Winston's effective for a fifth seems to match the recovery criteria which were redefined to a very low level. What would Baroness Meacher think on discovering that exercise levels weren't measured and it physical function was measured with a questionnaire subject to trial biases and when the 6mwt or the fitness levels (step test) showed no real differences.
In terms of finalizing publications they have been very slow at publishing. Didn't they say the 2 year follow up data was collected in 2011.