"This is why I'm disappointed that the CFIDS Association's BioBank is screening out gradual onset patients to begin with. "
Yeah I just learned yesterday they are screening out CFS patients who are males without pain. This is suppose to be a pretty well known subset of CSFers. I go to one of the four docs who screen for Biobank and prior to yesterday I was looking good as a candidate but not after my doc visit yesterday where I was excluded.
I'm sure that's disappointing to say the least.
I was not aware of this subset despite the fact that at one time it would have fit. Personally I would like to see LESS arbitrary divisions until we find MORE common ground amongst CCC-based studies.
Do the study, track the "subsets" and make conclusions accordingly. Otherwise the conclusions are clouded (I'm sure the counter-argument is that this is a well-defined cohort) by an assumption. It would also seem to limit retrospective studies based on the data. Perhaps real scientists know better than I.
I'm a gradual onset male for whom pain was a late-arrival but it's bad and it appears to be here to stay.
Oddball all around, 'tis me. :Retro smile: