Hello. My name is Andrew ___. Thank you for allowing me to speak.
In 1984 an outbreak of a flu-like illness began in Lake Tahoe and nearby areas. A review of 259 patients, published in Annals of Internal Medicine stated: “Neurologic symptoms, MRI findings, and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system.“ A government committee decided to invent a new term that would cover this outbreak. The term they invented was “Chronic Fatigue Syndrome.”
More than a decade after the outbreak, Prime Time Live presented a television news story about Chronic Fatigue Syndrome. They conducted a telephone interview with William Reeves of the CDC, who told them that the patients in Lake Tahoe were actually suffering from hysteria. In the same news story, Stephen Strauss of the NIH said CFS is so subjective that patients will commonly feel better no matter what you give them. These are not the kind of beliefs that give one a sense of any seriousness or urgency in solving a problem, and I began to wonder if their ongoing research was anything more than just going through the motions.
So what has followed these events? NIH funding for CFS scrapes the bottom of the barrel, at about the same level as hay fever. The CDC ignores even its own definition of CFS, and uses Oxford Criteria Studies to justify its views about exercise as a treatment.
For those of you not familiar with the Oxford Criteria, it was invented in England and has only one symptom: fatigue. This is not how we define CFS in the United States. And so citing these studies is no more appropriate than citing generic coughing studies to make conclusions about how to treat asthma, TB, or pertussis. But that’s what the CDC did. And they even created a special toolkit for doctors, with treatment suggestions based on this research.
Recently, the CFSAC recommended that the toolkit be removed from the CDC website. It has not been removed. But they removed a different page where they cited Fulcher and White (1997) to explain their support of exercise as treatment. So now the conclusion that was drawn from the Oxford Criteria study remains, but with no real way to contest it because the citation is gone. This is not what many of us hoped for when we heard the website would be reviewed. This is like painting over rotting wood, and saying it’s a repair.
In closing, I want to thank the CFSAC members for volunteering their time. Also, during my brief talk today, I mentioned a Prime Time news story, two studies, and the Oxford Criteria. If CFSAC members would like to see any of these, please feel free to email me using my contact information.
Thank you for letting me speak.