Tuesday, March 4, 2014

Happy Anniversary to my Diagnosis -- NOT!

26 years ago today I got my diagnosis. In that 26 years, they haven't come up with a cure or even a treatment. There's still not a damn thing doctors can do for a newly-diagnosed patient other than say "learn to live with it". People are DYING from this, and no one gives a damn!!!!

What would you do, how would you feel, if you saw 26 years of stonewalling instead of progress toward helping you feel better? I see a quarter-century of patients' lives wasted, time we'll never get back. I see friends dying -- some of the disease and some of suicide when they've lost all hope.

The cure rate for cancer in that time frame has gone up exponentially. The cure rate for ME/CFS remains zero. Zip. Nada. Llewellyn King notes: "Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, "With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie."

From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering."

And you think there's a bright side of this that I should be looking at?!
Damn straight I'm angry.  I'm angry that research has been stonewalled by people with their own agenda, with no concern for the lives of millions of patients who just want their life back.  I'm angry that the one drug that has been shown to work (Ampligen) is still tied up in trials after two decades and not accessible to anyone except the few patients lucky enough to have been grandfathered into the trials.  I'm angry that doctors still haven't been educated that this is a Real Disease, not just "inability to deal with stress", "anxiety", "depression", or any of the other psychobabble attached to it.

1 comment:

Pamela Stocks said...

I share your anger, but it's international. I'm in the UK and lived in Spain for 16 years too. I first had ME/CFS symptoms when I was around 11 or 12 in 1968/9. I had Glandular Fever (Mono) in 1973 and never recovered. Doctors, parents and everyone else never believed me. I added fibromyalgia in 1995, but it took until 2008 - 40 years - to get a diagnosis. Which is wrong, but as you point out, certainly wouldn't have meant I got any treatment anyway.