Jessica Bavinton wrote:
I agree, the evidence in favour of GET significantly outweighs any anecdotal evidence against. What's important is that the programme is delivered according the NICE guidelines and PACE protocol.
I'd suggest looking up BACME:
One problem is that the evidence available in this area is so very poor, and often presented in confusing ways by those whose careers depend upon the promotion of GET as an effective treatment.
It is all very well to talk about the importance of following the PACE protocols for treatment, but the PACE researchers showed very little interest in following their own protocol  for how to present their results in a meaningful manner.
In their protocol's criteria for recovery, patients were required to have an SF36-PF score (using a questionnaire used to measure disability) of 85 or over. A score of 75 or over was required for a patient to be classed as having had a 'positive result', and a score of 65 or under was used as part of the criteria for severe fatigue and disability which required treatment . Now that they have to release their results, they are claiming that a score of just 60 indicates a patient has a 'normal' level of disability, and can be considered recovered [2,3].
Initially, the move to a score of just 60 was justified by the claim that this represented the mean - 1 standard deviation of scores for the working age population. It has now been recognised by even the PACE researchers that this is false. More recently, they have tried to justify the change in their recovery criteria from requiring a score of 85 or more, to one that required a score of just 60 or more by claiming that nearly half of the working age population has a score of under 85. If one examines the data cited, this is also clearly false , although the PACE researchers have yet to admit this publicly.
If this were not already worrying enough, some have gone further. The chair of BACME, Esther Crawley, was the corresponding author on a paper which claimed that PACE showed "cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment" . Even when using the new and drastically weakened criteria for recovery, the reported recovery rates were actually only 7% for SMC, 22% for SMC + GET, and 22% for SMC + CBT; so CBT and GET could only be said to lead to an additional 15% of patients recovering, even by the low standards of the PACE researchers . Given the danger of response bias for those patients who are being encourage to believe that they have more control over their symptoms, and then trying to fill in questionnaires more positively (and the fact that PACE showed CBT and GET leading to no improvements for numbers of patients on incapacity benefits, or able to work) it is quite possible that despite all the time and effort patients put in to CBT and GET programmes, they led to no real improvements in health, despite the dramatic claims being made by some researchers and clinicians.
Currently, those involved with PACE are refusing to allow patients access to the data on the outcome measures laid out in their own protocol, making it harder for those with CFS to make informed decisions about their own treatment . Hopefully we are slowly moving towards a point when this is not seen as acceptable, and researchers will be forced to make public even data which is inconvenient to them and their claims of expertise.
Given the poor quality of much of the research in this area, and the history of inaccurate and potentially misleading claims coming from those who promote GET, I would suggest that patient anecdotes and polling are the most reliable measures of outcome we have, deeply flawed as they are.
I would encourage anyone with CFS to try to look very carefully at the available evidence, rather than just trusting those who claim to be experts.
 PACE protocol: http://www.biomedcentral.com/1471-2377/7/6
 Initial PACE paper: http://www.thelancet.com/journals/lance ... 2/fulltext
 PACE paper on recovery: http://www.meassociation.org.uk/wp-cont ... _Jan13.pdf
 Paper on SF36 PF population norms cited by PACE: http://jpubhealth.oxfordjournals.org/co ... 3/255.long
 Paper which claims 30-40% recovery rate: http://www.biomedcentral.com/1472-6963/11/217
: FOI request for outcome measures laid out in PACE trial's protocol: https://www.whatdotheyknow.com/request/ ... tes_and_po