Posted by Jack (167.206.58.39) on April 11, 2000 at 21:40:18:
One of the reasons it is so important to join OUCH is because we need a registry of sufferers so we can be studied.
It is amazing how little we really know about clusters particularly how they change over the course of a lifetime, how prone we may be to other diseases and what we can expect as we age. If we knew more of this basic stuff people could make informed decisions.
Most of what we have is anecdotal hogwash.
I will give you an example of how important emprirical data is. An awful lot of what we know about heart disease came from ONE STUDY. You may have heard of it - the Framington Heart Study - from Massachussetss. They have been studying this group of people for years. Monitoring all sorts off things. Effects of blood pressure on heart disease, cholesterol, smoking, etc. The stuff they keep telling us to do or not to do does not come from dissecting rats or looking at test tubes but rather simply watching these freeks from Mass. Empirical data over time. That is what we need as clustereads.
For example:
What if we found out that if a chronic who stopped smoking had a 100% greater chance of becoming unchronic ( for lack of a better term) than one who continued to smoke
or maybe that it had no significant effect
Wouldn't that help people to make an informed decision.
I, for one am so sick of the anecdotal suff I could scream. You know what I mean - "I noticed that when my wife has a lot of gas I tend to have more intense cluster headaches but only after I have had egg foo yong".
If you haven't measured it then you don't KNOW it.
Sorry for the diatribe.