I guess you're right, Alex, that subgrouping/clustering implies a very large cohort and therefore large expense. But still, that seems to me like the pre-requisite for really getting started properly on anything, and even a series of smaller-scale data-gathering studies according to some protocol that could enable the data to be pooled, would be a good start. Perhaps one of the best prospects here is web-based crowd-sourcing of the problem, but the most promising work I'm aware of is the Open Medicine Institute's massive database they're building; that really does sound like a promising approach, though I don't know how much of the data they're gathering is going to be suited to the subgrouping problem - I hope it will be.
Mark, I absolutely agree with you. I would also like to see the data. But until we have that I think it is premature to call it a distinct illness or not. I need to reread the science based medicine article I cited above to refresh my memory.
Barb C.:>)
I agree with that too Barb: in the absence of that data we can't even say, scientifically, what clusters and subgroups and multiple illnesses may exist. My view is that, until we have such evidence, we can't really get started on doing much terribly meaningful science on
anything else because the cohorts are always going to be mixed up. So from the point of view of a rigorous attitude to "science based medicine", one might say that we haven't even reached stage 1 with any of these illnesses yet, and in that sense there is no rigorous "science based medicine" at all to go on.
I think you and I can agree 100% on our understanding of that rigorous attitude. Where I think you and I will tend to begin to differ is that I would then go on to say two things:
First, that if, decades after the gulf war, and over 50 years after the Royal Free ME outbreak, it is true that there is no really high quality rigorous "science based medicine" evidence whatsoever about any of these illnesses, then rather than saying "oh well medicine and doctors can't do anything then" because science based medicine is the be-all and end-all, what we are all obliged to do instead is to go with the best evidence we
do have, and yes it's of much lesser quality due to the cohort definition problem, and it's all subject to a fair degree of critique and uncertainty, but there is still a mass of evidence, from anecdotal reports and the wealth of experience of long-term patients and physicians, through to some good scientific research on good cohorts based on barely-validated definitions, which does suggest quite a bit about the nature of these illnesses. So the best we can all do is muddle through and try to make the best of all that body of evidence, rather than discount it because it isn't up to the best modern standards. Unfortunately, a dogmatic approach to scientific evidence will be likely to pick off every piece of the evidence that we do have and question it to bits until there is nothing there at all, which really gets us nowhere and is logically self-consistent and rational but ends up as a purely destructive activity.
Second, that if the mainstream or establishment view is simultaneously saying that you can't have any treatment or research or anything, really, in the absence of solid and rigorous "science based medicine", and at the same time no attempt is being made to conduct any such research, over a period of decades, then you have a situation of gross neglect and even abuse of the sick, and you can't really judge the legitimacy of the 'gold standard' that is being set without reference to the fact that the 'gold standard' is by definition impossible to achieve. That gold standard, whether it be "science based medicine" or "evidence based medicine" or whatever, sounds very reasonable and intelligent and rational in its own terms, but if the reality is that no such research exists, or is feasible, for a particular disease, and no serious effort is being made to fund such research, then the 'gold standard' is not the intelligent and rational approach that is appears to be, but merely a bar that is deliberately set at an impossibly high level to jump over in order to prevent anyone from jumping over it. In such a situation, it's quite rational for patients to resort to the best science available, and inevitable that patients will resort to weaker science and even quackery, because it's better to experiment and try something that might have weak evidence than to just give up all hope and wait for the arrival of a solid and rigorous solution that nobody has even started looking for yet.