When did it stop being about you and become all about them?
Was it when they decided to pull their funding from a scientist who found evidence for a retrovirus, once she was thoroughly ground up in the cannibalistic maw of the Centers for Disease Control in 1991?
Marc Iverson, the North Carolina scion of the Nucor Corporation who founded the CFIDS Association--purportedly a patient advocacy organization--said he decided to pull the plug because Elaine DeFreitas had been so tarnished by CDC that even if she ultimately nailed down the causative virus, no one would believe her after the government mauling.
In 1995, David Bell told me, "Three years ago I came to understand that the CFIDS Association offered [DeFreitas] up. They said, 'We need to be on the good side of the CDC and the NIH.' Basically, there was a certain point at which the politics came up and the money thing came up, and they decided it was time to dump her," Bell added. "I'm stunned that somebody could be hurt so much."
Maybe that's when it stopped being about you. Eighteen years ago. When it was clear that instead of fighting for patients, or scientists who were trying to help patients, their ultimate goal was to get cozy with the CDC and the NIH.
When did it stop being about you and start becoming all about them?
Was it in 1994, when editors of the CIFDS Association's newsletter, its primary communication conduit with its members, were increasingly prone to submitting articles containing even mild criticism of federal researchers and policymakers directly to those researchers and policy makers for review prior to publication? Late that year a former college instructor, sick for thirteen years, proposed an article about the "paltry response" of the government to the epidemic. She reported that she was told that her article "might have to be cut, because the CFIDS Association (was) trying to work with the government."
Was that when it stopped being about you and started becoming about them?
To a disgruntled member of the group's Public Policy Advisory Committee, executive director Kim (Kenney) McCleary wrote that same year, "[You] want the Association to discontinue its present style of advocacy and employ 'rage' tactics similar to those employed by Act-Up and aggressive activist movements in the breast cancer movement...While I agree that we have a great deal to learn from the successes achieved by AIDS and breast cancer activists, there are several barriers to the Association adopting an advocacy style that depends so heavily on these strategies. First CFIDS is not accepted by the general public as a serious, threatening illness, like AIDS and breast cancer are. Second, there are no well-funded public education campaigns to provide a foundation for enlisting the general public in our efforts at this time. Third, rage, while powerful, is a volatile emotion that requires and consumes tremendous amounts of energy (and political capital) to sustain. It is difficult to control and can easily backfire. It erupts spontaneously in response to an incident or crisis and then peaks and subsides quickly. We must use it judiciously."
Kenney advised that in the years to come, "the Association will continue to build on [a] moderate, essentially mainstream, approach to advocacy."
At the time, Paul Cheney found a certain irony in the group's newfound compliance with NIH and CDC administrators. "It's an aspect of institutional growth," he told me. "They now see themselves as part of the establishment, and they're adopting the methods of the establishment."
Maybe that's when it stopped being about you, in 1994--fifteen years ago--and started being about them.
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