Thursday, May 12, 2011


Tom Hennessy was able to persuade CFSAC to have their meeting on the 10th and 11th so that advocates could be free on the 12th to visit their elected officials.
Representatives of the ME/CFS community were at the Department of Health & Human Services building in Washington, DC on May 10th to protest and shoot this video.
Yet, more than a quarter-century after the first patients got sick, there's still not much "awareness" out there of the neurological nature of CFS.  Most people still think we're lazy, crazy or just whiny babies.  And the medical establishment is among those who are misinformed.
Unfortunately, the Powers That Be are still more interested in protecting the reputation of Saint Stephen of Straus who declared us to be nothing more than depressed menopausal women than in protecting the populace from a devastating contagious illness, but we advocates are trying our best to educate people that what's on the CDC's website is erroneous at best, and downright false and dangerous if you're going to be brutally honest.  We're trying, and if you've watched any of the YouTube videos from the various CFSAC hearings you know how hard some of our folks are trying to get someone, anyone, to listen.
Unfortunately, just as we seemed to be getting through to the current crop of government representatives of CFSAC, they're changing the players around, so we have to start from scratch educating a new bunch.  As soon as we have their identities and contact information, we promise, we will beat them over the head with the same facts and research studies we've been trying to get attention to.
The men and children who are affected seem to be "inconvenient truth" to those who still persist in considering the main problem to be related to menopause, or women wanting to be housewives, or females caving under stress.
Nonetheless, thanks to Amy Dockser Marcus of the Wall Street Journal and some other fine journalists, healthy (Mindy Kitei) and patient (Hillary Johnson) alike, and our special angel Laura Hillenbrand, the word is starting to leak out.  They can't entirely stuff this genie back in the bottle any more.
We need to keep our eyes on such baby steps as a reminder that we're making progress.  Not as quickly as any of us would like, but we are making some progress in chipping away at the wall.
Thanks to Jean for this quote:
"Give us a number so we won't annoy you again until the amount of money you begin spending on lawsuits makes it more profitable for you to save people than to kill them."
         – And The Band Played On
If the government can pay reparations to Japanese-Americans who were held in camps for a couple of years during WWII, they can certainly pay reparations to those citizens who've been held captive in solitary confinement for a quarter-century of unnecessary ill health. 
As the civil rights activists used to say:
Keep your eyes on the prize!

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