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(This was in response to a suggesting organising a conference on vs)

As far as diseases go, there are the common and the rare. The common are, well common, and thus often treatable as considerable research goes into them.

To get research on a rare disease going is very tough. And if it does happen it is going to be focused on diseases that are life threatening or at least highly debilitating first.

There is only route to get medical professionals to research vs: the mighty dollar. And unless one of us happens to be very liquid I don't really see that happening.

So what can we do? Take matters into our own hands. One thing reasonably achievable is a statistical analysis of data sets. And I don't mean surveys with 4 questions. I'm talking about strict scientific-statistical method with things like chi-squares and correlation coefficients. We could actually PROVE that there is high comorbidity with anxiety disorders, PROVE that there is a relevant connection to migraine, PROVE that certain medication improves symptoms.

Unless we start something like this this group and its board will always look the same: people coming, complaining (legitimately) that their doctors either laughed at them or at least honestly said they don't have clue and finally leaving having given up hope.