Chronic Fatigue Syndrome is interesting because of the large number of people who believe they have it and that it is a serious disease, and the divide in the medical community that it has caused. (The topic may not belong in this blog, since we still don’t know what causes it, but it seems clear from what follows that it is not just ‘hypochondria’.) In her book Osler’s Web – Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Publishers, 1996), Hillary Johnson describes some cases.
One example is Laura Hillenbrand, the author of Seabiscuit: An American Legend, the unlikely page-turner about the ungainly racehorse that became a long-shot champion. This also became a successful Hollywood movie. But Laura often did not have the energy to leave her house (or even her bed), and in fact when she was writing the book, would have a box of cereal next to her so that she did not have to waste precious energy walking to the kitchen. She remembers the day the disease suddenly struck, and left her for more than 15 years with symptoms such as a vertigo so strong that she had to write parts of the book with her eyes closed. You can read more details of what this formerly athletic woman went through at Laura’s Story
Another example: Inga Thompson, who was one of the U.S. Olympic Women’s Bicycling Team’s best cyclists, fell ill after six weeks on the team and became bedridden. Her Reno doctor tested her for a number of infectious agents, without results. Finally he told her that she had the “post-Olympic blues” (a diagnosis he seems to have invented). On the other hand, her CT brain scan was abnormal, which is true of other patients also.
Hillary Johnson interviewed neurologist Chris Gallen, who had viewed brain scans of CFS patients, which had many tiny white lesions. “The bottom line is that no one knows what the hell they mean,” Gallen said. But, he added, “There’s a tendency in medicine to dismiss data because it doesn’t fit with your understanding of a problem. As a neurologist, I’ve had doctors explain that they wanted me to see a patient who they thought was probably a crock because the patient had this or that odd set of symptoms. But by the time I finished listening to their history of what I’m going to see the patient about, I knew what the disease was because those symptoms that seeemed like odd, quirky symptoms to the doc added up to a classic neurologic syndrome that they just happened to not know about.”
Likewise, Dr. Paul Cheney, who had studied many patients with CFS, said “In medical school you’re often taught that if you cannot define an illness by the technology of the day, the patient must be crazy”.
A patient of Cheney’s who was himself a surgeon by the name of Thomas English, wrote that “there is nothing in your experience in medical school, residency, or practice with its grueling hours and sleep deprivation that even approaches the fatigue you feel with this illness”. When Hillary Johnson interviewed him, he remarked that in his own surgical training, his fellow students quickly learned “if you think you’ve found anything rare or unusual, prepare to be laughed at. But that ignores the obvious fact that there are lots of rare things. And it took me a long time to realize that people were seeing rare things; they were just squeezing round objects into square holes. Of course, the greatest zebra of all is something new” (from the proverb ‘If you hear hoofbeats, think of horses, not zebras’).
In the case of the skeptics of Chronic Fatigue Syndrome, the sufferers were “people strangely wedded to a mass fantasy of suffering and disability”, a “subculture of invalidism”, or a psychiatric disorder thriving among suggestible women
Stephen Straus, an investigator at the NIH, believed that CFS had been around a long time but with different names. In the 1860’s it was known as neurasthenia (a neurosis characterized by weakness and fatigue). In the twentieth century, it has been identified as anemia, chronic brucellosis, hypoglycemia, systemic candidiasis etc.
Straus added that many patients were psychologically ‘different’ before they developed the syndrome.
What is the truth about CFS? Is it a psychiatric condition? A neural condition? Is it a new virus that causes just enough physiological havoc to disable people without causing marked visible symptoms? Is it something else?
More info on Chronic Fatigue Syndrome, by a group that seeks cures, is at http://www.cfids.org/.