KateinIowa, January 3, 2011
The article did a sufficient job in summarizing recent events. But the crux of the problem is political. Years ago, when the Incline Village outbreak and a few others first occurred, a couple of federal researchers played the “ego” card and have spent the ensuing years covering their @#^%*s. One fed has gone so far as to develop a behavioral approach to “curing” the illness. I’ve been through this behavioral approach and all it did was make things worse. Now, he’s trying to maintain the method he has developed (and, no doubt the $$ he is getting for it) by holding fast to old ideas, even with the new research staring him in the face.
Exercise is another hoax. Doctors tell you all you need to do is exercise. What they don’t accept (in spite of my telling them over and over and over and over) is that when a person with ME/CFS exercises, they feel worse and may even be flat on their backs for the next week.
I have had insurance people accuse me of faking it and doctors look at me like I’m crazy and I am SO tired of this entire mess. True, I have had good periods and bad periods. For me, I’m better off if I accept that this is my lot in life, and I must take care of myself. This is the biggest hurdle for many of us.
I hope I live long enough to see a positive resolution to this fiasco. I appreciate the earlier reference to the struggle people with HIV faced during the early periods when this disease was identified.
You know what? CFS/ME was around even then. So why is it taking so long? What political power is lacking here that HIV patients had?