Saturday, March 4, 2006


On March 4, 1988 -- 18 years ago today -- I got the diagnosis that changed my life.

My whole family remembers the day, my uncle's 52d birthday.  When I got back from the doctor, I called where they were having the party and repeated to each of them what the doctor had told me.  Good news, the problem had a name; bad news, the problem did not have a cure.  But I was assured that doctors were working on it.

Little did any of us suspect on that fateful day 18 years ago that in 2006, we would still be waiting for science to provide even an effective treatment, much less a full-scale cure.  CDC had a cure for SARS in 8 days -- 18 years later, I'm still waiting!  Why? 

Dr. Peterson suggests the reason is politics, and I'm inclined to agree with him.  Over the past 18 years, government money earmarked for CFS research has repeatedly been diverted to research more politically-correct diseases.  Even after an audit required that money to be returned to the CFS budget, a cursory review of the research attributed to CFS showed that some of "our money" was still being used for things having little or nothing to do with "our disease".   

Sure, denying the existence of CFS as a valid physical illness saves the government a great deal in Disability benefits.  But, speaking only for myself, the amount the government would be paying out for benefits (if they'd ever give them to me) is about equal to what I would be paying in in taxes if I were able to go back to work as a paralegal.  To me, this looks "penny-wise and pound-foolish".

Meanwhile, I'm on austerity budget -- the government's not getting much in taxes from me, because you don't pay sales tax on groceries. After deducting the cost of my health insurance, my Schedule C earnings aren't enough to owe income taxes on.  In what way is this beneficial to anyone?

I'd like to use the occasion of my anniversary to call for the government to finally take this disease seriously.  Maybe by my 28th anniversary, they'll be able to give me a real future, instead of excuses.