The Politics of CFS

The WHY. . . a speech in London by Hillary Johnson

"This pandemic, by which I mean the surge of cases that began in the early to middle 1980s, has been with us for close to a quarter of a century—a human generation. Millions around the globe are sick. I think it’s fair to say that people who suffer from this disease are collectively heartbroken. We mourn the children we were never able to have because this disease stole our youth. We mourn the loss of our most productive years. We grieve that we may miss an old age of fond memories. Some of us may have given up worrying about ourselves and can only worry about future generations.  "

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CDC Scandal or How a rogue CDC scientist, a journalist, and a U.S. congressman nailed an entire division at the Centers for Disease Control for conspiracy, fraud and lying to Congress.

Copyright © 2009 by Hillary Johnson, All Rights Reserved.

During the final years I was reporting Osler's Web, I was approached at a medical conference by the CDC's new chief investigator into "chronic fatigue syndrome," a former Naval officer, Ph.D. psychologist and agency-trained epidemiologist named Walter Gunn. The latter quietly asked me if I would meet him in his hotel room two hours later. I agreed. It was the last time Gunn and I allowed ourselves to be seen speaking to one another in public and the beginning of a three-year collaboration to expose the agency's theft of millions of taxpayer dollars earmarked for "CFS" research.

I had known since March 1987 that the agency was short-changing the public on the disease by refusing to pay for, or conduct, biological research and epidemiology on it. Yet, I was increasingly worried I would be unable to dig up definitive proof prior to publication. I defined such proof as official agency budget documents. Agency scientists themselves were occasionally letting the truth slip in interviews with me, but I wanted actual documents. After all,these same scientists might simply recant or claim they had been misquoted once the book was published.

By the time I met Gunn, I had filed myriad Freedom of Information Act requests for such documents, yet I had failed somehow to tap the appropriate vein, no matter how specific my requests. My office was crowded with cardboard boxes filled with paper from the agency, but none of it shed light on the discrepancies between the money coming into the agency--which was public knowledge--and what the agency was actually doing with the money, which was entirely mysterious.

When Gunn approached me, I knew immediately an angel had alighted on my shoulder. I didn't need to ask what he wanted; somehow, I knew. "There are things going on at the agency that need to be made public. There needs to be a congressional investigation," Gunn told me later that evening. I nodded. "I think you could be helpful," he added. I barely knew Gunn but his intensity caused me to believe I was in the presence of someone who had reached a turning point in his life. I knew Gunn would not be recanting. "Yes--great--of course," I responded. After nearly six years of reporting this story, someone in the enemy camp had renounced his allegiences and stepped forward to help me.

Gunn told me his conscience had been stung by his colleagues' behavior. He had pondered his action to reach out to a journalist for a very long time in hopes that his colleagues would retreat from their postures of malfeasance. He was a loyal agency employee, he indicated. Indeed, as I later realized, it was exactly Gunn's loyalty, his stature as a good company man, that had led his superiors to assign him to "CFS." They assumed he could be counted on to play the game. But they miscalculated.

"I don't want to hurt the CDC as an institution," he sought to emphasize that evening (a sentiment that flagged as his agency tenure came to its close three years later). But, he added, he could no longer remain a silent witness to the corruption in his own division.

Gunn was distraught, as well, over his colleagues' annual ritual of going before Congressional appropriation committees and lying about their progress in the disease in order to keep the money coming into the agency. Lying to Congress while under oath is a felony offense.

Gunn, for his part, ultimately revealed that he was stricken to his core by the cavalier criminality of his once-trusted colleagues. "If you don't believe the disease is real," he had implored them, "then don't take the money." When his co-workers ridiculed, then ignored, his concerns, he had taken the previously unimaginable action of going outside his own division for help, assuming the higher-ups at the agency would step in and set matters right. In a scenario reminiscent of the lonely, honest New York City beat cop, Frank Serpico, however, Gunn was initially reassured by top agency staff, but ultimately rebuffed, humiliated and, in time, punished by the highest ranking administrators at the CDC. He had sought me out only when it was apparent the corruption went, as Frank Serpico might have said, all the way up the chain of command.

Indeed, the misuse of millions of taxpayer dollars and the ritualized annual cover-up in Washington, D.C., Gunn by then knew and, eventually, I would learn, was occurring with the permission, apparently with the blessing, of the agency's second highest ranking official at the time, Walter Dowdle. The latter is now retired but during the period this abuse was occurring Dowdle was second-in-line to the directorship of the CDC.

At a future date, I will write about several remarkable aspects of my collaboration with Walter Gunn. For now, I will note that the definitive proof, when it came, appeared on a single page of paper that had not a word of prose, only columns of numbers on it. One weekend, Gunn and I sat together in his basement office in suburban Atlanta, his wife serving us coffee periodically, and studied that piece of paper for some time. Ultimately, Gunn cracked the "code" and was able to explain what the numbers on that Xeroxed paper meant. The house of cards that was the CFS research program at the agency came tumbling down before our eyes. Did we feel triumphant? Not at all. Shocked? yes. Troubled? yes.

I began to believe during those years of interacting with Walter Gunn, of listening to him speak for long stretches by telephone about his day to day observations of the machinations of his fellow epidemiologists and scientists, that the CDC had forfieted forever the right to lay claim over any aspect of this disease. I have seen nothing in the last decade to alter my view; indeed, policies and personnel--and dare I call it science?--at the CDC have only strengthened that view.

Immediately upon Gunn's departure from the agency, which was choreographed by the agency's public relations department so as not to appear to patients as if there had been any rancor between Gunn and his successors, CDC veteran William Reeves gave himself Gunn's job. Reeves has been principle investigator into "CFS" for seventeen years, now. He is perhaps the single most important reason "CFS" is considered a somatoform disorder or, more jocularly, "sickness behavior." Presumably Reeves will retire with full pension and perhaps an emeritus post in psychiatry at Emory University Medical School. Under Reeves' direction, the "CFS" research program at the agency collaborates with the medical school's "Mind-Body Program," a small unit within the schools' recently disgraced Department of Psychiatry.

Immediately after its publication in April of 1996, Osler's Web was brought to the attention of U.S. Congressman Jerrold Nadler's staff by Charles Ortleb, who was, in 1996, editor and publisher of The New York Native, and journalist Neenyah Ostrom. Ortleb's newspaper had assiduously reported on the AIDS epidemic in New York City and reporter Ostrom had monitored closely the simultaneous rise of "chronic fatigue syndrome." Nadler is a progressive democrat with a left-leaning constitutency that includes the Upper West Side of Manhattan and parts of Brooklyn, New York. 

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