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Graham. Yes, the whole thing has been ridiculous.
There has been little more than spin, bizarre mistakes, and incompetence.
A working age population which included those with chronic illness was already a questionable source for healthy norms. Then they moved to a worse comparison population which also included the elderly. They applied mean minus SD to a heavily skewed dataset, which they claimed was a working age population and later had to correct this so-called "descriptive error" while apparently maintaining that there was nothing wrong about what they have done.
Despite overlapping with entry criteria for disabling fatigue and/or significant disability, they framed it as "getting back to normal lives" at the Lancet press conference, then acted as if they shared no responsibility for journalists routinely confusing normal for recovery. They approved the Lancet editorial, which made false claims about the normal threshold being a "strict" criterion for recovery based on a "healthy" population (wrong), clearly contradicted the authors' own previous claims made about 60-65/100 points being reflective of major impairments, and was later ruled by the PCC to be misleading.
The only thing "demographically representative" about the normative dataset used was the fact it is from the UK. Demographics can also involve other measures such as age and illness, which they purposely ignored. Then they claimed they abandoned the original threshold because <insert schoolboy error of confusing a mean score for a median score, how on Earth could a professional statistician let that slide when the Bowling et al paper even warns us of heavy skew???>
They also falsely claimed, with a false explanation despite White being a co-author of both papers, why their threshold was more conservative than previous work, when in fact it was less conservative. Although they previously admitted the normal range in physical function was post-hoc, this was omitted from the recovery paper, and now it even appears that this major change to the protocol as well as the definition of recovery which is based on it, was not even approved or scrutinized.
The Lancet journal published the error and flaw despite "endless rounds of peer review". The Psychological Medicine journal also failed to spot the multiple errors it published, and would not correct them even when pointed out e.g. actively refused to publish a letter outlining a major error in the reasoning for changing the threshold in the paper.
Meanwhile, PACE supporters insisted that the results were unquestionable, uber "rigorous", "robust", and "highest grade". Patients were derided for supposedly being too stupid to understand the research and for supposedly having strong conflicts of interest for being ill and opinionated, while blundering researchers with careers and reputations riding on the trial outcome were praised as being "utterly impartial" scientists. FOI requests for data promised by the authors themselves years ago or to help shed light on the changes are commonly dismissed or regarded as "vexatious". [edit to add Dolphin's observation: Letter writers to the Lancet were falsely accused of writing biased unscientific personal attacks against PACE, despite the letters making easily verifiable points and not discussing the authors on any personal level whatsoever.]
How long is the scandal going to continue before we are given some sort of fair concession? I'm just so sick and tired of the repeated blundering, the spin doctoring, the hole digging, the face saving, and the politics. Why can't those involved just admit mistakes have been made in the pursuit of this research, accept that CBT/GET has been hyped, and then help to make the most of the data that was collected? Our health is at stake here. A little frank honesty would have gone some way in healing the rift of mistrust that has developed between these researchers and a significant proportion of the ME/CFS community.
clusterfuck (plural clusterfucks)
(slang, chiefly military) A chaotic situation where everything seems to go wrong. It is often caused by incompetence, communication failure, or a complex environment.
http://en.wiktionary.org/wiki/clusterfuck
