I expect that most of you will be aware of how the minor changes in questionnaire scores found under PACE have been used to justify all sorts of claims about a third of patients being cured, or CBT and GET leading to a recovery rate of 30-40%. Much of this was based upon a redefinition of 'normal' levels of fatigue and disability which allowed very ill patients to be classed as 'back to normal' (even if they were sicker than when they'd started the trial) - this was also all measured by questionnaire scores in an unblinded RCT which gave patients receiving CBT and GET far more time with therapists than those in the control group (appx 16 hrs vs 3hrs?) . The PACE researchers have always been quiet about how this was spun to mean recovered, and let others cite their work for these nonsense claims, while refusing to release the figures for the number of patients which reached the criteria for 'recovery' which was laid out in the trials published protocol. [Edited to insert link]: http://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po It now seems that they have come up with with a new criteria for 'remission'. We do not know what is required for a patient to be classed as being in remission (it certainly wasn't laid out in their protocol!), but it looks like it will again be small changes in questionnaire scores. In a recent presentation, Peter White has provided figures on rates of 'remission', and it looks like more patients ended up in 'remission' than received a clinically significant benefit from treatment. It looks like this is something else which could be spun for claims of 'recovery' and 'cure'. Page 13 of this: [Edit: It seems that the presentation has now been deleted. A graph from it was copied below though, and I saved a copy if anyone wants me to put it on-line somewhere edit2 @maxwhd put it online here: http://twitdoc.com/view.asp?id=1481...d&doc=235586809&key=key-zpr4xbwX8WrWvSnyyEtC]: http://ifdm2012.rsm.ac.uk/downloads/presentations/peter-white.pdf If a pharmaceutical company were behaving in this way, it would be recognised as unacceptable. Because it's psychiatric researchers and CFS, everyone knows that the only reason patients would want outcomes released in the manner laid out in the published protocol is that they're anti-psychiatry! The PACE protocol is here: http://www.biomedcentral.com/1471-2377/7/6 It should be recognised that this still is not a terribly tight criteria for 'recovery', and leaves room for those classed as 'recovered' to have significant ongoing problems which were not present prior to falling ill, but an SF-36 PF score of 85 is much closer to the average (for healthy working age adults) of 95 than the score of 60 which has been claimed to indicate recovery previously). The old criteria again relies upon questionnaire scores, when we have seen how psychosocial interventions which encourage positive thinking or an increased sense of control can improve questionnaire scores without improving objective measures of activity levels or neuropsychiatric performance, but as actometers were dropped as outcome measures after it had been shown in another RCT that CBT was ineffective in allowing patients to increase activity levels, the only external measures of capacity we have are the 6 minute walking test and employment levels (employment levels showed no significant difference between groups, 6mwt showed slight improvement for graded exercise group, no difference for the others - CBT+SMC actually doing slightly worse than SMC alone). The original criteria is still far better than the re-definitions that they have come up with recently, and importantly, it is the one that they laid out in their own protocol - it should be the one that they are held to.