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 “benign myalgic encephalomyelitis” to the observed clinical entity. Some of the controversy over the term has focused on whether those with the illness actually experience “encephalomyelitis”—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 “epidemic hysteria.” In other words, they questioned whether a viral outbreak occurred at all—not just whether some patients had neurological complications or long-term sequelae. They likened the outbreak to a reported episode of “hysterical over-breathing” 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 on—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:
“Myalgic 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.”
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:
“Recent 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.”
I share this hope.
Comments
7 responses to “New Study Reports First-Hand Accounts of 1955 Hospital Outbreak”
Thanks David.
You write “Although no pathogen was ever identified, key investigators at the time believed it was possibly or likely an enterovirus.” and “Unfortunately, we will almost certainly never have conclusive proof of a causative agent.” but I hope you’ve seen the articles posted by @RFH1955 (whom you mention, thanks !) which reported that enteroviral testing was done on some of these patients and was positive. EV testing was also done on pwme in the UK and Canada during the 80s, and records were kept by the Infectious Disease dep’t in Ontario Canada’s Ministry of Health, as reported by Dr. Hyde and others.
So, while it’s certainly greatly appreciated that these eyewitness nurses confirm that it was “not hysteria”, this is a bare minimum. There is more evidence available that supports an EV outbreak specifically (as opposed to glandular fever [mononucleosis], caused by EBV). EBV is still a popular theory because of viral onset symptoms similar to EV, but as pointed out by Hyde and others, the incubation period for EBV is too long to cause outbreaks, and a positive EBV test occurs in well over 90% of the adult population. It can definitely cause a disabling long-term M.E-like condition, but we must strive to separate these conditions/diagnoses based on their causes, not on their symptoms.
This is one of the main reasons we M.E. [per Ramsay/Hyde/ICC] advocates find ourselves in 2020/21 having to repeatedly point out that post-viral SARS CoV-2 does not “equal” or “convert to” M.E., as is over-enthusiastically claimed by some groups, but rather that many viruses can have long-term sequelae… and that similar symptoms do not mean the same illness or the same treatment.
I say “one of the main reasons” because the other reason is of course the fact that EV research was shut down and M.E. was left behind, as psychiatry & “fatigue” happily took over the narrative and the funding. The parallel to this past year’s events is obvious : funding & publicity will go to those who claim to study SARS CoV-2, even when they include so-called ‘ME/CFS’, and this inaccurate conflation will bury M.E. yet again.
Thanks for your continued work on sorting out the facts.
So great that this work is coming to light – thanks
Thanks for the summary. Interesting history.
Allison, could you like the article(s) stating enterovirus was found please?
I love the term “intrepid archive-spelunkers” for the document hunters.
I think 1955 man-splaining this outbreak primarily affecting women as “hysteria” was typical of the time.
Please refer to: A.Melvin-Ramsay. MA. MD . Honorary Consultant Physician in Infectious Diseases, Royal Free Hospital, . London. “Myalgic Encephalomyelitis & Post Viral States. The Saga of the Royal Free Disease” 2nd edition. (First Edition: 1986). ISBN 0 906923 99 9. 104 References. Produced by Gower Medical Publishing, london for the Myalgic Encephalomyelitis Association.
This information is not new to those who have ME as per Ramsay or Hyde.
Growing or even recovering Polio causing Enteroviruses or other enteroviruses in 1955 during the Royal Free Hospitals Epidemics was not the easy matter suggested by McEvedy and Beard in their thesis. Until 1950 or even later physicians were unable to recover enteroviruses in the UK except in experimental research centres with access to monkeys. Royal Free Hospital did not have such a viral research centre. Until the late 1950s almost no polio enteroviruses were ever recovered from living paralytic polio victims.
McEvedy and Beard attacked the female nurses by calling them hysterics because a bigger percentage of women fell ill with M.E. These M.E./Polio patients were primarily bedridden. Many, unable to walk or get to the toilets passed their stools in a bed pan, while in bed. Only female nurses cleaned up & emptied bedpans because men didn’t do such dirty work. It was almost entirely the women who were exposed to these enteroviruses, and who were thus continually infection
Yet it is junk science such as this that neurologists are still using to diagnose hysteria and take paralyzed children, or children with M.E. injured muscles, away from their parents for psychiatric treatment. It is junk science like this that has allowed North American physicians to snicker at M.E. patients behind their backs and prescribe alarming amounts of anti-psychotic medications to patients who have been injured by the same family of viruses that cause paralytic Polio or kill patients.
It is junk science that patients with ME/Polio have been & continue to be ignored or even worse considered the same as CFS all because of political and insurance companies dictating how ME patients are to be treated.
For more information: Dr Byron Hyde’s Publications https://www.facebook.com/Dr-Byron-Hydes-Publications-100209395280161
So glad you’re exploring the historical evidence of ME. I’m not well enough to recount a synopsis of Osler’s Web by Hillary Johnson but it is an invaluable resource in understanding the mismanagement by the CDC in the US outbreaks. Important to read this tome.