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Rik Carlson:

Why We Lose

(The Politics of Disease)






In een kort betoog schetst Rik Carlson (oprichter van de The Vermont CFIDS Association)

vier belangrijke redenen waarom wij het (politieke en medische) onderspit delven.






Chronic Fatigue Syndrome:

The Politics of Disease


Why We Lose


by Rik Carlson

June, 2012



We are Type A Personalities. We work long hours.

We work hard. We work smart.

We attack projects with the grip of a pit bull.

We attract a following because we lead the way.


As expected, we respond to disease with the same fervor and passion that we do all of life. There is no other option but success, and in this case, success means full recovery.


So why is it that after 20 years we lose?


Why is it that those who've flocked to our banner are cast as pariahs, dismissed, misdiagnosed, and booted onto the street?


Why is it that such a significant portion of the population is denounced, defamed, maligned, banished, belittled, denigrated and condemned?


I'll tell you why.


First, because it's mostly women ...




Second, it's the name. ...




Third, it's the insurance companies ....




And finally, we lose because we're fractured. ...




There is a need to recruit that energy and vitality. A motivated army of healthy advocates could lead us towards recovery and put our activism on sound footing. It's proven that we can't do it quickly enough on our own.




We need healthy motivated advocates to back our organizations, help coordinate our fund raising, map our advertising, to tackle the name problem head-on, and to bring those buried in abuse, those cast out onto the street, a hint, even a modicum, of respect and understanding.


If we do this, we can wake up the Giant.
If we wake up the Giant, we can take back our lives.
If we take back our lives, we can win.