Thursday, March 4, 2010
Happy Anniversary to me!
On this date in 1988 -- 22 years ago -- I got my diagnosis. The family was gathered for my uncle's birthday, so I called my grandmother's house to tell them. Great birthday present, we thought, that once you knew what the problem was, it could be fixed.
The doctor who diagnosed me -- an Ivy League virologist -- assured me he personally was researching this disease. With such genius on the case, we were sure there would be a cure soon.
Little did we know........
Here we are 22 years later and still not entirely sure what virus is responsible (though XMRV appears to be a good bet). Ampligen still hasn't been FDA-approved. Very little is known by the average doctor about CFS; what the researchers have discovered simply isn't getting down to the front lines where it can be of use to patients, and what patients try to tell their doctors is often brushed off with arrogant remarks like "I'm the doctor."
If not for the politics of the situation, we should have had a treatment by now, even if not a complete cure.