From Paralysis to Fatigue: a critical review of Edward Shorter’s view on chronic fatigue syndrome

Canadian historian Edward Shorter is one of the most influential writers to have dismissed the illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In his articles, Shorter has described ME/CFS as a “trendy non-disease”, “a psychic epidemic” and a “pseudo-disease that does not exist.” Because Shorter’s work is still being cited, this blog post will analyze and critically review his statements on ME/CFS.

A popular reference to dismiss ME/CFS

Shorter is a social historian who has written books about the making of the modern family, psychotic depression, a history of women’s bodies, and various other topics. His latest book tells the story of porn star celebrity Stormy Daniels and “how the adult entertainment industry teaches us, shapes our behavior and enhances our lives.” He has written about many subjects, but his main expertise is the history of psychiatry and this is what interests us here.

ME/CFS is a chronic illness that affects approximately 0.4 percent of the general population. Most of the patients are women. Although ME/CFS is highly disabling, doctors know little about its causes and pathology. Most experts think it is a complex and heterogeneous condition.

Shorter, however, came up with a straightforward explanation soon after the syndrome was defined. He sees ME/CFS as a form of somatization where patients “do not in fact have an occult organic illness called ‘ME’ but have suggested themselves into their chronic pain, fatigue and dizziness because the culture says those are appropriate symptoms.” Although his view is at odds with current understanding of ME/CFS, Shorter is still being cited by medical professionals (examples here and here). In 2016 he was invited to give a presentation on ME/CFS at the National Institutes of Health – a decision that sparked unified criticism from the patient community.

When someone writes extremely dismissively about ME/CFS, it is common to find a mention of Edward Shorter in their references (if they have any). A good example of this is Cees Renkens, a Dutch physician who was the chair of the ‘Vereniging tegen Kwalzalverij’ – a Dutch organization against quackery – for more than 10 years. Renkens described ME/CFS as a fashionable illness that would go away if people stopped talking about it. In his doctoral thesis, Renkens frequently refers to Shorter as the source of his extreme views. Another example is literary critic Elaine Showalter. In her 1997 book ‘Hystories‘, Showalter mentions chronic fatigue syndrome among alien abduction and satanic ritual abuse as modern forms of hysteria. Shorter is mentioned as a source and inspiration.

First paralysis, then fatigue

We thought it would be useful to have a closer look at what Shorter has written. He outlined his view on ME/CFS in the book ‘From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era’, first published in 1992. The book describes how hysterical symptoms such as sudden paralysis of the limbs, disappeared at the beginning of the 20th century as medical knowledge of neurological conditions increased. Signs such as the Babinski reflex helped physicians to distinguish between neurological symptoms that were the cause of organic illness and those that were not. In the 20th century literature, on the other hand, there are multiple reports of chronic fatigue and pain, two vague symptoms that were hardly mentioned in medical records a century before. In his book, Shorter contends that there is a connection between the two phenomena. He writes:

“The Babinski test of the upgoing toe must have canceled much motor hysteria. After 1900, not wanting to have their symptoms proved unreal, many patients who might formerly have selected paralyses, chose symptoms much more difficult to ‘disprove,’ such as headache and fatigue.”

Shorter focuses on ME/CFS as the prime example of a fashionable diagnosis that captures the latter symptoms. In a 2015 article on Psychology Today he wrote:

“In the way that lives were once ruined with such toxic diagnoses as ovarian hysteria, lives today are ruined by CFS.”

Unfortunately, Shorter provides little argumentation for his hypothesis. It is repeated throughout the book as he narrates the history of psychosomatic complaints.

Why the two phenomena would have anything to do with each other remains unclear. For one, the Babinski reflex was discovered in 1896 whereas the first case definition of CFS was published in 1988. There is almost a century in between. If CFS replaced toxic diagnoses such as ovarian hysteria, it took a long time to do so.

If chronic fatigue and pain were hardly recorded in 19th-century medical records, this was likely unrelated to the respectability of hysterical symptoms or the discovery of the Babinski reflex. After all, many illnesses including cancer, multiple sclerosis, and rheumatoid arthritis also result in severe chronic fatigue and pain. A more plausible explanation of what might have happened is that medical literature of that time failed to accurately capture the patient experience and focused on the most spectacular pathology and symptoms. Male doctors were probably attracted to write about sudden paralysis or fainting spells of (young and mostly female) members of the bourgeoisie rather than dull symptoms such as pain and fatigue.

Just because 19th-century medical records do describe hysterical motor symptoms but little chronic fatigue and 20th-century medical literature shows a lot of chronic fatigue with no mention of hysterical paralysis, this does not mean that one substituted the other or that CFS is a modern form of hysteria.

A problematic method to identify hysteria

Let us take a further look at Shorter’s hypothesis. One apparent question is: how can Shorter know that the 19th-century young women, whose cases he dissects in the book, did not suffer from some undetected organic illness? After all, medical knowledge at the time was rather poor. There were few trained neurologists and multiple sclerosis was still thought to be a rare disease.

Shorter’s says that he looked at etiology and response to placebo treatment to determine if symptoms were psychogenic in nature. He wrote:

“Is it certain that their symptoms were not caused by an organic disease? Retrospectively, it is not. There is only the presumption of psychogenesis, based on (a) the history of the illness, such as paralysis after seeing a frog on the road, and (b) the response to what was essentially placebo therapy, such as hydrotherapy or administration of a laxative. These two circumstances give certain symptom patterns a flavor of psychogenesis.”

There are some obvious problems with this approach. For one, patients and their doctors can have false beliefs about the etiology of an organic illness. If they think cancer is the result of suppressed emotions, for example, (as some people did in the past), this does not make a tumor psychogenic.

Second, medical notes have always been full of enthusiastic recommendations of treatments that we now know to be ineffective. Doctors have always oversold their ability to heal. If a physician notes that their patient improved after, say bloodletting, this hardly means that the illness was psychogenic.  Sometimes patients improve regardless of treatment and sometimes they report doing a little better to keep good relations with their physician.

Another confounder is the relapsing-remitting nature of illnesses such as multiple sclerosis. Patients suffering from multiple sclerosis can suddenly become a lot better or worse, demonstrating that such fluctuations are not always a reliable sign of psychogenesis.

But even if we ignore all those cautionary remarks and follow Shorter’s logic a bit further (something we cannot not recommend), things still do not make sense. There is, for example, no effective treatment for ME/CFS. A recent review of randomized trials concluded that “there was no definitely effective intervention with coherence and reproducibility.” Even a brief chat with ME/CFS patients will quickly reveal that they try all sorts of treatments: diets, vitamins, exercise, cognitive behavioral therapy, antivirals, antibiotics, etc., all without much success. So, if response to placebo treatment is an indication of hysteria, ME/CFS would fail the test. Some researchers have even tried to argue (unconvincingly in our view) that the placebo response is lower in ME/CFS than in other medical conditions.

A similar conclusion can be drawn about the etiology of ME/CFS. A lot of risk factors have been reported but there is only reliable evidence for the role of infections. Several studies have shown, for example, that Epstein Barr-Virus infection increases the incidence of ME/CFS. This does not suggest psychogenesis, rather the opposite.

A label to avoid stigma

Another element of Shorter’s hypothesis is that patients somaticize their psychological distress into symptoms that could suggest an organic illness so that their complaints are taken more seriously. Patients suffering from ME/CFS might be laughing out loud when they read that sentence because a label of ME/CFS often results in just the opposite of being taken seriously. If ME/CFS is an attempt to avoid stigma, it could be considered one of the most unsuccessful attempts ever.

There is another obvious problem with Shorter’s view on ME/CFS. Prevalence studies in the United States have shown that most people with ME/CFS are undiagnosed. In a recent pediatric study for example 95 percent of patients who turned out to have ME/CFS, were not diagnosed. Studies in adults resulted in similar estimates. So, following Shorter’s logic, why would all those patients somaticize their psychological distress into symptoms such as fatigue if those do not result in a diagnosis? And if it is indeed the toxic diagnosis of ME/CFS that is causing long-term disability, why have most patients with the illness not been diagnosed?

A third problem is that ME/CFS is just too disabling and isolating for Shorter’s hypothesis to work. Studies have suggested that ME/CFS patients are more disabled than patients with other chronic conditions including multiple sclerosis, congestive heart failure, depression etc. Prognosis is generally poor with an estimated median recovery rate of only 5 percent. Some patients are completely bedbound and have been ill for decades. Many are forced to live in a darkened and isolated room and can no longer see friends, colleagues, or family. If ME/CFS patients unconsciously somaticize their psychosocial distress into bodily symptoms that resemble a respectable organic disorder then this is overkill by multitudes. Living with ME/CFS is a hard and lonely life, it is far from a convenient outlet for emotional disturbances.

Loneliness and the media

Shorter also has an explanation for the rise of “goofy illness attributions” such as ME/CFS. He suggests that the transition from traditional to postmodern family life has something to do with it because it reduced our contacts with other individuals. In his book ‘From Paralysis to Fatigue’, Shorter explains his line of thinking as follows:

“The advantage of living closely with others is that one can test one’s ideas. I’m feeling poorly today. Do I have chronic fatigue syndrome? No, it’s because you slept poorly last night. This is the kind of feedback that occurs routinely in living together with others.”

According to Shorter, impoverishment of social contacts reduced the feedback loops through which individuals can discuss their physical complaints. The last pages of his book try to argue that most ME/CFS patients are unmarried or divorced women because “such individuals have only the media against which to test readings of their internal sensations, and the media purvey the most alarmist view possible.”

Apparently, Shorter could not resist the temptation to come up with his own (rather poorly thought-out) explanation of ME/CFS, demonstrating that he is far from a skeptic. Community-based studies have shown that ME/CFS patients are not more frequently divorced or unmarried and the prevalence of the illness is higher in young adolescents.

When Shorter talks about the “pressure on the unconscious mind to produce only legitimate symptoms” he resembles the outdated psychosomatic literature of Franz Alexander and Helen Flanders Dunbar. It should be noted that unlike these predecessors, Shorter is not a trained physician who regularly sees patients. This makes his extreme statements on ME/CFS even more remarkable. He has for example suggested that joining a sufferer’s support group has harmful consequences for a ME/CFS patient, by describing it as “the last step on this pathway to disability.” About doctors who diagnose ME/CFS he wrote:

“In every large community there will be found at least one physician willing to play up to his patients’ psychological need for organicity. Thus do the caregivers themselves contribute to their patients’ somatic fixations, plunging youthful and productive individuals into careers of disability. This is malpractice, and the medical profession collectively should be in a position to forstall it.”

We have tried to make sense of Edward Shorter’s vision of ME/CFS – perhaps more than we should have. Despite the best intentions, we could not make sense of it. If you have more success in understanding his views, feel free to post clarifications in the comments below. If you would like to receive a notification about new blog posts, subscribe by entering your email address below.

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