By David Tuller, DrPH
The name myalgic encephalomyelitis is inextricably linked with an outbreak of what appeared by all accounts to be a viral illness at London’s Royal Free Hospital in the second half of 1955. More than 200 people, most of them female staff and students, fell ill. Some reported long-term complications. Although no pathogen was ever identified, key investigators at the time believed it was possibly or likely an enterovirus.
After the outbreak, investigators assigned the name â€œbenign myalgic encephalomyelitisâ€ to the observed clinical entity. Some of the controversy over the term has focused on whether those with the illness actually experience â€œencephalomyelitisâ€â€”that is, inflammation of the brain and central nervous system. (Such inflammation could perhaps explain much of the reported symptomology of the illness, but evidence for its presence remains inconclusive.)
In 1970, the British Medical Journal (now The BMJ) published a paper from a leading psychiatrist and his junior colleague that reinterpreted the entire phenomenon as an episode of â€œepidemic hysteria.â€ In other words, they questioned whether a viral outbreak occurred at allâ€”not just whether some patients had neurological complications or long-term sequelae. They likened the outbreak to a reported episode of â€œhysterical over-breathingâ€ among schoolgirls. The first piece of evidence they cited to support this theory was that the majority of those reporting symptoms were women. This paper helped lay the groundwork for the successful efforts 20 years later to divert the field away from biomedical examination and toward psycho-behavioral interventions.
Given that sixty-five years have passed since the Royal Free outbreak, general awareness of it has receded from view, although for many in the patient and advocacy communities the event has attained almost mythic status. It will never be possible to fully reconstruct or determine what went onâ€”and what caused whatever went on. But a recently published paper in the journal Medicina provides some interesting details and fresh insights based on first-hand testimony from informants present during the 1955 events. The authors, Rosemary Underhill and Rosemarie Baillod, were themselves both medical students at the Royal Free at the time of the epidemic.
(Also, since last summer, a twitter account has been posting a steady drip of documents about the Royal Free outbreak from what appears to be a voluminous collection of news articles, internal reports and other archival material. The intrepid archive-spelunkers who scavenged these documents have pulled together a treasure trove of original source material. I look forward to reporting on this archive more fully; I wish I’d had more time before now to look into this history.)
In their paper, Underhill and Baillod explain that their goal is to shed light on the ongoing dispute over the nature of the Royal Free outbreak:
â€œMyalgic encephalomyelitis was named to describe an outbreak affecting the lymphatic, muscular, and nervous systems that closed the Royal Free hospital for three months in 1955. Fifteen years later, two psychiatrists concluded that epidemic hysteria was the likely cause. ME/CFS research studies show multiple pathophysiological differences between patients and controls and a possible etiological role for infectious organisms, but the belief that ME/CFS is psychosomatic is widespread and has been specifically supported by the epidemic hysteria hypothesis for the Royal Free outbreak. Our objective was to obtain accounts from ex-Royal Free hospital staff who personally experienced the 1955 outbreak and evaluate evidence for it being an infectious illness versus epidemic hysteria.â€
Through appeals disseminated in Royal Free-related publications, the authors sought interviews with people who were present during the outbreak, whether or not they got sick. In the end, they interviewed 27 people; all but one were women. They included nine doctors, five nurses, one physiotherapist, and 12 medical students. Six of the 27 were themselves diagnosed with Royal Free disease. The authors compare these accounts against the arguments mounted by McEvedy and Beard and dismiss the theory that the events could be attributed to epidemic hysteria.
I love medical history, so I find this paper valuable and enlightening. Unfortunately, we will almost certainly never have conclusive proof of a causative agent. Nor will we ever be able to fully deconstruct what happened during those chaotic months in 1955. But eyewitness accounts, even though filtered through decades of time, add texture and nuance to our understanding of what people experienced at the time.
In an important side observation, the authors note the current pandemic and the widespread reports of persistent symptoms after an acute bout of illness. They appropriately highlight the similarities between ME/CFS and the post-viral symptoms experienced by many Covid-19 survivors:
â€œRecent reports show that some patients infected with SARS CoV 2 have developed post-viral symptoms characteristic of ME/CFS. Given the growing recognition of similarities between ME/CFS and post-viral SARS CoV 2, we hope that these patients are not regarded as having a psychosomatic illness. We also hope that future studies investigating features of both diseases may lead to new treatments that could potentially be of benefit for both groups of chronically ill patients.â€
I share this hope.