One tiny matter that the above letter does not address deals directly with the paper on economic benefits and the effect on public spending. This was the ostensible official reason for funding the research.
Those with long memories who read papers in detail will recall that presumed economic benefits were based on the assumption that the gains claimed in the original paper would be sustained indefinitely, even if the highly-trained professionals who ran the study were replaced with "less senior doctors" costing only half as much. We now have final results showing absolutely no long-term differences between different arms of the study using the senior professionals. While it is always possible "less-senior doctors" would be more effective, this exciting possibility was not pursued.
What about other cost savings? If the study had used a true control arm without treatment, we might well have learned that NHS specialist care was worthless, with a potential for saving expenditures which benefit no patients. This kind of result was precluded by design from day one.
Other results had shown that changing patient opinions did not result in significant changes in physical performance, employment or need for services, in direct contradiction to the fundamental assumptions about "false illness beliefs" on which the whole project was based.
This strikes right at the root of arguments for funding this approach. It appears that accountability for public spending recommendations is interpreted in a very peculiar manner by the PACE team. While I'll admit I can't make sense of their latest twists in interpretation, these authors appear to be claiming that simply having such researchers funded, anywhere in the UK, somehow benefits CFS patients who have no contact with them. If they were talking about insurance companies wishing to deny coverage, or a government wishing to deny or delay benefits, this would make more sense, yet they specifically say they are not acting against patient interests.
Actions, or lack of same, keep driving me back to the idea that the primary economic benefits of interest in PACE are those of the researchers themselves.
