Posted by CFS Facts:
We've watched "our" money squandered on research having nothing to do with CFS.
We've seen an audit demand repayment of that misused money to the CFS fund, whereupon it was misused a second time!
The average life expectancy of a CFS patient is 57 years.
Our first-generation activists, the Pat Feros and Mary Schweitzers, are older than that, already living on borrowed time. I'm in my 50s and wondering how much time I have left: did that 12-year remission buy me any time? Or am I enjoying a last hurrah before I wind up permanently in a nursing home, unable to take care of myself and just waiting to die?
We're running out of time and patience. If the spectre of imminent death scares us into being "hostile and inappropriate", so be it. Or is it simply seen as "hostile and inappropriate" because the powers that be aren't used to proper well-bred ladies having enough backbone to stand up and yell "we're mad as hell and not going to take it any more!"? Because ... Read more>>