I am trying to input everywhere
hope it is not annoying yet
but what I know from my med translations is that anyway people taking part in CIs go through so called quality of life surveys, and there are a lot of them, well modelled and well respected. And they are also subjective of course because people gauge their own conditions, like level of anxiety ( I think there are 5 to 10 well respected scales to do it), level of pains (At least 5 different I think, well developed for rheumathoid artritis patiens, for example), etc.
so my general ideas are: we might probably adopt existing survey forms/scales (if they are publicly available) to meausre at least quality of life, anxiety level and level/intensity of pains or other unpleasant sensations, so it will improve our scientific approach part. it would make survey more staged and complicated, but improve it reliability in terms of using well known medical scales.
as for the rest - I feel the more info we can collect about general health status of BFS sufferes, the more helpful it would be anyway, as the picture would became clearer and clearer.
Finally, there are anyway two ways to gauge our conditions - external (exams, bloodworks, visualisation methods etc.) reveal certain conditions or their absence. But there is no meter to gauge happiness, intensity of twitches or pains, or anxiety level. That should be judged on the basis of our own response. Comparison of those two data arrays might be also useful in terms of clarifying what is BFS and how much it sucks sometimes and what to do with it.
anyway Patric i think you a doing great job for all of us.