A phenomenon well familiar to historians of medicine is the psychic epidemic, an illness attribution that spreads epidemically, then is forgotten.
In the nineteenth century, psychiatry fostered such an epidemic with the belief that masturbation caused insanity. Many young people obsessed for years over the thought that their “self-abuse” had caused irreparable psychic harm.
Another epidemic focused on the supposedly toxic mental effects of “reflex irritation” in the ovaries. Many young women would plead for ovariectomies on the grounds that their irritated ovaries were causing “hysteria.”
In the 1950s the belief spread epidemically that “hypoglycemia” caused mental changes, and the newsprints were full of advice about taking small meals frequently to make sure that blood sugar levels were adequate.
Then, however, the pace of these epidemics began to accelerate, driven by two forces: (1) a growing conviction verging on unshakable certainly of the organicity of one’s problems; (2) the more rapid communication of ideas, caused initially by television, then the social media, making it possible for communities of sufferers to coalesce and convince one another that their symptoms were caused by an occult disease that medicine had not yet identified.
In this context, several new diagnoses arose: “chronic Epstein-Barr virus” infection; this illness attribution then dissipated with the discovery that the great majority of the population carried positive titers for the virus; there followed repetitive strain injury, fibromyalgia, and various beliefs in the damage that organic solvents in the environmemt were wreaking upon the immune system.
In this context, as I explained at length in my book From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era (New York: Free Press, 1992), arose the diagnosis of Chronic Fatigue Syndrome, which initially focused upon a theoretical breakdown of the immune system, then moved on to viral etiologies. CFS was termed “Myalgic Encephalomyelitis” in England, a theoretical inflammation of the brain and spinal cord causing muscle pain. Disability from ME/CFS was substantial, yet, like the other psychic epidemics, belief in this illness attribution began to wane, the probable result of medical uninterest in the diagnosis. (As a general rule, patients try to avoid illness attributions they know will invite frank disbelief among physicians.)
Yet ME/CFS did not complete the downward leg of this natural history. A core of true believers continued to agitate for it, with the surprising result that the Institute of Medicine of the National Academy of Sciences convened a special committee to consider it.
That report, overwhelmingly positive in nature, has just been published and proposes to rename the diagnosis Systemic Exertion Intolerance Disease (SEID). The committee argued that “Exertion of any sort – physical, cognitive, emotional -- can adversely affect these patients in many organ systems.” The committee proposed a “decrease in functioning” plus dizziness and “cognitive changes” as diagnostic criteria.
Now, previously “decrease in functioning” had meant mainly chronic pain and fatigue. Yet these symptoms are very common in the population. According to the National Center for Health Statistics, 10.3 percent of the married population reported that “everything is an effort” either “all or most of the time,” or “some of the time.” (Summary Health Statistics for U.S Adults: National Health Interview Survey, 2012, tab 14, p 50). There are similar statistics for chronic pain and dizziness. As for “cognitive changes,” that can mean anything.
What is required to convert these inchoate and nonspecific symptoms into an illness is an act of belief, a psychic epidemic, in other words. And my feeling as a historian is that this is what we are now dealing with in the ME/CFS movement.
It is, of course, possible that some unknown disease will be discovered to explain the symptoms of ME/CFS. Yet this assortment of symptoms has been investigated for more than 40 years, and nothing has been found. It is nonetheless possible that further research may prove rewarding.
Yet the IOM report systematically overlooked any alternative explanation; it ignored the large critical literature in medicine on CFS; in general, the committee demonstrated evidence of a familiar federal phenomenon: “agency capture.” Regulatory bodies occasionally become captured by the industries they are supposed to regulate. This particular committee included several CFS advocates at the table, and held two public hearings at which advocates and patients had ample opportunity of expressing their views. Critics were not invited. Given typical committee dynamics, it is unlikely that this committee could have written any other report.
Is it possible that the symptoms of ME/CFS are occasionally caused by a real but undiagnosed disease? In some cases, undoubtedly. But the term includes two other clinical populations as well: patients with delusional somatization, who simply misinterpret the signals their bodies are sending off; and patients with a psychiatric disorder such as depression, which often causes feelings of pain and fatigue. The interests of these latter two groups are not well served by asserting that they have an occult organic illness.
But what does it matter what people believe about their bodies? Why is it important if the IOM report reinforces these illness beliefs?
It is important because these illness beliefs may lead to disability, as people obsess about their symptoms, entrench themselves in the conviction of organicity, and become disabled. Their marriages may break up; they may lose their jobs. The human consequences of these illness beliefs, in other words, may be considerable.
Joining a sufferers’ support group that will irreversibly confer a label is really the last step on this pathway to disability. What Nortin Hadler, an internist at the University of North Carolina, wrote in 1986 of “fibrositis” remains true today: “Is it possible that patients’ perception of symptoms as meaningful or even incapacitating is somehow contingent on the labeling? Unless labeled, they might remain people with aches; labeled, they become patients with fibrositis." (Hadler, “A critical reappraisal of the fibrositis concept,” Am J Med, 81 [suppl; 3A], 1986, 29)
I realize that these words will fall unreceptively upon some ears, and I regret that some CFS patients may feel slighted by the disbelief I have expressed in this post. Yet there are larger stakes here. In the way that lives were once ruined with such toxic diagnoses as ovarian hysteria, lives today are ruined by CFS. Many sufferers cease to be productive members of the community and end up flat on their backs. (The IOM report dwelled upon the dangers of standing up.) Such a waste of human potential is tragic, and if there are lessons that we may draw from the history of medicine, they may be learned here.