@Jonathan Edwards I understand what you are saying about NICE only being interested in whether a treatment works, and works cost effectively. I assume this also includes taking into account whether a treatment has what they judge to be too many unacceptable side effects in large numbers of patients, or having the opposite to intended effect.
For medicines, I understand there is a reporting system so that if side effects show up only after the medicine is released into the community, a recommendation can be caveated with cautions to look out for that side effect, or recommendations made about particular groups who should not be given that drug. Or if bad enough the recommendation in NICE for that treatment can be withdrawn.
But how do we report side effects of GET and CBT if the doctors and researchers ignore reports of PEM after exercise and long lasting worsening of symptoms and reduced energy capacity? Is there a reporting system for side effects of psychological or exercise therapies?
I do understand the point about patient surveys not being accepted as evidence because they are self selecting and subjective reporting. I wonder whether there is any way around this apart from all patients undergoing these therapies wearing actometers and keeping symptom diaries to provide evidence of long term compliance and effects.
I wonder whether you have any suggestion of how we could overcome the problem of compiling evidence of harms acceptable to NICE.
On a separate point, you say there is no further evidence beyond what was known in 2007. I take the point that since PACE was a non scientific trial, its evidence is worthless. However, I do think it provides useful evidence - though not of the sort White and co wanted.
Along with the FINE trial, PACE clearly shows evidence that however hard the researchers tried to bend the trial to get the outcomes they wanted, they failed to do so. In other words, they showed no long term benefits for either treatment.
For FINE this was evident at 1 year, for PACE it was evident at the 2 year follow up. Even without the reanalysis using the protocol specified outcomes, the PACE and FINE authors themselves showed the treatments don't work. Surely this should be enough to get the recommendations withdrawn.