HISTORY OF ME/CFS
MYALGIC ENCEPAHLOMYLITIS/CHRONIC FATIGUE SYNDROME IN HISTORICAL CONTEXT
Like many other diseases, the symptoms of ME/CFS have been around for centuries but known by different names. Accounts of people with ME/CFS type symptoms have been recorded as far back as 1681 when the British physician Thomas Sydenham described “muscular rheumatism”. Though Dr Sydenham didn't have the condition, others had obvious symptoms. The most distinguished of these was that of Florence Nightingale and Charles Darwin. Nightingale - the pioneering British nurse developed symptoms that were identical to those of ME/CFS after a suspected case of brucellosis in May 1855 while tending to soldiers and civilians in the Crimean War. Like many of her current ME/CFS contemporaries, she was often incapacitated and accomplished much of her advocacy from her bed off and on through the rest of her life. It is by no accident Florence Nightingale Day, May 12, is commemorated as International ME/CFS Day. Charles Darwin began experiencing ever-worsening and debilitating bouts of incapacitation starting in 1831, including extreme exhaustion, heart palpitations, anxiety, sweating, gastrointestinal issues, depressed mood, vertigo, and tinnitus among others. They continued until he died in 1882. The symptoms exhibited by Nightingale and Darwin were given a name in 1869. According to Merriam-Webster, a psychiatrist by the name of EH Van Deusen borrowed the term, neurasthenia, that had been coined in Italy 50 years prior to describe muscle paralysis associated with tetanus. Van Deusen applied this term to muscle pain and nervous exhaustion in the paper "Observations on a form of nervous prostration, (neurasthenia,) culminating in insanity” published in the American Journal of Insanity in April 1869. (vol. 45, pp. 445-61). This was followed almost simultaneously by an article written by neurologist George Miller Beard in the Boston Medical and Surgical Journal, dated April 29, 1869, pp. 217-21, denoting its use in practice. As written in Neurasthenia in Women – Beard stated:
“The condition was thought to be "a disease of the nervous system...characterized by enfeeblement of the nervous force..." Young women appear to have been particularly susceptible to it and its onset was frequently 'triggered' by an infection. Other quotes describe neurasthenia as a "...condition of nervous exhaustion, characterised by undue fatigue on [the] slightest exertion, both physical and mental... the chief symptoms are headache, gastrointestinal disturbances, and subjective sensations of all kinds". Although the term was used very broadly, chronic fatigue was seen as the “primary or essential symptom" with "its cardinal characteristics being an inordinate sense of physical or mental fatigue". The term 'Neurasthenia' began to be used to encompass a range of non-specific symptoms and consequently the usage of the term began to wane. Interestingly, in a similar manner to recent medical debate, the medical profession became deeply divided and polarised on the issue, with there being those who strongly felt it was a physical illness and others who disputed its validity. (https://www.mesupport.co.uk/index.php?page=a-short-history-of-m-e).
After World War I a number of diseases started being distinguished from each other. Neurasthenia fell out of favor but was soon replaced with something else.
In 1934, a polio outbreak filled a Los Angeles hospital with patients. Within several weeks the hospital staff came down with symptoms that resembled ME/CFS. Because these symptoms, especially muscle pain and inability to move and use the legs so closely resembled that of polio, it was called atypical poliomyelitis. This was the beginning of a prolonged series of outbreaks in the United States, Iceland, The UK, Europe, Australia, and South Africa over the next two decades that affected over 1000 people. The outbreaks assumed as many differing names as localities in which they occurred: Iceland Disease, Akureyri Disease, Royal Free Disease, Ramsay’s Disease, The English Disease, benign myalgic encephalomyelitis, and epidemic neuromyrasthenia. Encephalomyelitis and neuromyrasthenia were both coined in 1956 and 1957, respectively, during the Royal Free Hospital Outbreaks in London (1955 to 1958). At this hospital there worked an infectious disease specialist named Dr A Melvin Ramsay, and an epidemiologist, Dr E.D. (Ernest Donald) Acheson. Both men were pioneers not only in first coining myalgic encephalomyelitis (muscle pain related to spinal inflammation) but in identifying the distinguishing symptoms that characterize the disease. Ramsay is usually credited with first use of the term “benign myalgic encephalomyelitis” in a May 26, 1956 article in the UK Lancet medical journal; however, a thorough review of the literature available reveals encephalomyelitis as a condition was first identified by Dr Acheson in a November 20, 1954 article in the Lancet detailing the case study of a small outbreak occurring alongside Polio that involved 14 nurses in the Middlesex Hospital (London) in late summer 1952, where he appeared to be a deputy medical officer at the time - (please see – Encephalomyelitis Associated With Poliomyelitis https://www.sciencedirect.com/sdfe/pdf/download/eid/1-s2.0-S0140673654906054/first-page-pdf- also below). Doctor Ramsey also used the term encephalomyelitis in the May 26, 1956 article where he described characteristics of the Royal Free Hospital outbreak, a much larger one that afflicted 300 people. In that article, Encephalomyelitis Simulating Poliomyelitis, Dr Ramsey, which he also co-authored with Dr M.D. Aberd, and Dr E. O’Sullivan, made the observation encephalomyelitis had been mimicking poliomyelitis all the way back to the 1934 Los Angeles outbreak https://www.sciencedirect.com/science/article/abs/pii/S014067365691234X. The full term “benign myalgic encephalomyelitis” was never used in the Lancet until April 13, 1957 in an article by Dr JF Galpine and Colm Brady of the Infectious Disease Department of Whitley Hospital in Coventry, UK (see https://www.sciencedirect.com/science/article/abs/pii/S0140673657910243-also below). The benign part was dropped several years later.
Doctor Ramsey has a special place in history as the physician who defined myalgic encephalomyelitis and its set of primary and accompanying symptoms, and the first to document its hallmark symptom of post-exertional malaise. His descriptions and findings were adopted by neurologist Lord Bain in the 1962 6th Edition compendium Diseases of the Nervous System (https://silo.tips/download/what-is-me-what-is-cfs). His discoveries and collaborations were, in large part, the impetus behind the World Health Organization’s groundbreaking 1969 declaration of ME as a neurological illness. The outbreak clusters, incidentally, have been as mysterious as the disease itself. For example, including those Dr Ramsay studied, there have been 76 documented cluster outbreaks around the world since 1934, the last one in Norway in 2004. Starting in 2020, with the onset and proliferation of the pandemic, there has been a percentage of people who have developed COVID-19 experiencing post-viral symptoms that resemble ME/CFS. It is quite possible that various contagious and or infectious disease manifestations can at times cause pockets of outbreaks that quickly spread among people who live and work in close quarters as it overwhelms their immune systems.
Despite Ramsey and colleagues hard work and the WHO recognition of ME as a neurological disease, 1970 proved to be an ominous turning point in the history of ME/CFS. Two UK psychiatrists, Collin McEvedy and AW Beard, (no relation to George Miller Beard) studied 15 outbreaks. On January 3rd, the two released a report in which they concluded the main drivers behind ME, “were psychosocial phenomena caused by one of two mechanisms, either mass hysteria on the part of the patients or altered medical perception of the community.” Doctor Ramsey vociferously objected, attempting to counter them. Unfortunately, this was the answer the medical community and governments were looking for and widely accepted McEvedy and Beard’s report, ignoring the WHO, and sweeping ME under the carpet. It was easy. There was no need for anybody to waste time and money on a fleeting disease that could be easily forgotten, and the perfectly rational excuse to ignore those in the shadows. Doctor Ramsay, nonetheless soldiered on, continuing his hard work, studying and refining ME and post-exertional malaise until his death in 1990. He remains one of the world’s earliest authoritative experts on the disease and was the only beacon for decades as the cluster outbreaks continued, the majority of these after 1970 generally ignored by the medical community and summarily dismissed an emerging illness, banishing millions of people to a darkness of torture and suffering.
As people with ME remained hidden from the world, outbreaks continued into the 1980s, seemingly dismissed by everyone except the victims themselves, but events in the year 1984 were finally enough to once again, start boiling the pot. It started in Tapanui, New Zealand, and originally was called the Tapanui flu, until the late Dr Peter Snow saw the similarities between it and the historical outbreaks of ME. There was a widespread outbreak throughout Quebec, Canada that involved over 500 people and in the United States, an outbreak that started in the fall of 1984 and lasted well into the summer of 1985 where a “mysterious illness” spread through the Incline Village and Truckee, California area near Lake Tahoe affecting 160 people. The illness presented with flu-like symptoms, as well as symptoms resembling Epstein Barr virus, and a sizable number of the 160 developed crippling exhaustion. Two local physicians in that area who treated the patients, Dr Peter Cheney and Dr Daniel Peterson, were astounded to find a large number of tests demonstrating a strong reactivity to the Epstein-Barr virus (EBV). They postulated that perhaps this outbreak of sickness was due to some form of infectious EBV. The outbreak was large enough to garner media attention and in the fall of 1985, the CDC sent two investigators who only examined the case summaries and patient charts before eloquently stating: “Currently available data neither prove nor disprove the hypothesis that EBV activity is responsible for chronic illness, but it is clear that the diagnosis of CEBV using current clinical and laboratory criteria in an individual patient is unreliable." Drs Cheney and Peterson strongly objected, believing that there was obviously something that needed to be further investigated. In New York, Dr David Bell saw many of the patients who were involved in the LyndonVille Outbreak. Doctor Bell (shockingly) saw the same types of issues present in his patients. The physicians continued their local investigations into 1987 and as the oddly persistent symptoms continued, and media coverage of the outbreaks drove unexpectedly high call traffic, the CDC finally convened a working group and released a report in 1988 concluding this was a loosely defined illness they named chronic fatigue syndrome. Outcry ensued, with patients and advocates alike calling it a demeaning and inaccurate term, especially in light of the fact skeptics had been calling it “yuppie flu” since media coverage of the outbreaks began.
Like Polio, a connection between CFS and EBV could never be found. By the early 1990s, the “yuppie flu” moniker had started to fade away and there was actually some building recognition in newspaper articles that the disease was real and a consensus among those who managed to take an interest, that the patterns of the disease seemed suggest an abnormal immunological component with the wealth of lab data showing reactive EBV antibodies perhaps signaling an unknown infectious agent or some kind of an abnormal immune response to normal EBV exposure that caused the immune system to become stuck in neutral. Stephen Straus, then head of the CDC even suggested such but as usual a commitment to more thoroughly and aggressively researching and studying the disease never materialized. Time went on and with only advocacy groups pushing for further studies, the concept of CFS begrudgingly became more narrowly defined with time but nowhere near matching its counterpart. It is not difficult to obtain Dr Ramsey's writings. It would not have taken a lot of effort for a government agency to observe the similarities between the already documented symptoms of ME and of those being experienced in the United States and in New Zealand outbreaks, as well as countless others experiencing similar symptoms and degree of illness. The advocacy groups in the United States took it upon themselves to fill the gap and create an alternative name. In 1992, the late Tom Hennessey came up with the acronym CFIDS (chronic fatigue immunodeficiency syndrome) to reflect the building belief the illness was one of an autoimmune origin, perhaps caused by some kind of an as-yet unknown pathogen. The name was popular among activists, until CFS researcher Dr Benjamin Natelson and two other associates wrote a paper published in Clinical Diagnostic Laboratory Immunology in 2002 that cited too few consistencies in laboratory data to conclude an autoimmune disorder. The name lost its luster and the use of CFS remained intact, much to the seething anger of the Advocacy Community. Other viruses were studied, none of them turned out to be a smoking gun. Fifteen years later, better tests revealed a strongly abnormal immune, but not necessarily autoimmune component.
Today, despite controversy, outcry, and division in the Advocacy and Patient Communities in the US, the name ME/CFS has managed to prevail. Thirty years passed between the Tahoe Outbreak and the National Academies of Medicine statement redefining the illness and definitively making post-exertional malaise as one of the symptom requirements (2015). The NAM publication Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness suggested scrapping the moniker ME/CFS and replacing it with the acronym SEID or systemic exertional intolerance disease: however, while the SEID definition makes up the backbone of the CDC diagnostic criteria, the name has yet to be officially put to use ( https://me-pedia.org/wiki/Systemic_Exertion_Intolerance_Disease ). The ME/CFS Community in the United States, who first resisted equating CFS with ME, has begrudgingly accepted it because the combo term currently provides the best description of the most widely recognized symptoms of the illness. What was once a hated title with a derisive connotation has now taken its place alongside ME and summarily equated itself with the pioneering work of Dr Melvin Ramsay, at least for now.
SUPPORTING EVIDENCE AND FURTHER READING:
SUMMARIZED TIMELINE:
https://www.massmecfs.org/more-resources-for-me-cfs/131-history-of-cfscfidsme?showall=1
https://www.mesupport.co.uk/index.php?page=a-short-history-of-m-e
THOMAS SYNDENHAM
https://www.the-scientist.com/opinion-old/scientific-medicine-and-chronic-fatigue-syndrome-55368
FLORENCE NIGHTINGALE
https://me-pedia.org/wiki/Florence_Nightingale#cite_note-5
https://blog.oup.com/2015/08/florence-nightingale-syphilis-death/
http://whchronicle.com/florence-nightingale-still-comforting-the-sick/
https://www.may12th.org/pdf/May12th-History.pdf
CHARLES DARWIN
https://www.americanscientist.org/article/darwins-enigmatic-health
https://www.darwinproject.ac.uk/letter/DCP-LETT-1234.xml
https://www.darwinproject.ac.uk/letter/DCP-LETT-1236.xml
https://academic.oup.com/biolinnean/article/121/2/458/3039471
NEURASTHENIA:
https://www.merriam-webster.com/dictionary/neurasthenia#h1
https://dsq-sds.org/article/view/3917/3642
http://exhibits.hsl.virginia.edu/nerves/
MELVIN RAMSAY/E.D. ACHESON:
https://www.sciencedirect.com/sdfe/pdf/download/eid/1-s2.0-S0140673654906054/first-page-pdf
https://me-pedia.org/wiki/1955_Royal_Free_Hospital_outbreak
https://www.sciencedirect.com/science/article/abs/pii/S014067365691234X
https://pubmed.ncbi.nlm.nih.gov/13637100/
https://www.hfme.org/wramsay.htm
https://pubmed.ncbi.nlm.nih.gov/13320871/
https://www.meresearch.org.uk/wp-content/uploads/2012/11/Acheson_AmJMed.pdf
https://www.sciencedirect.com/science/article/abs/pii/S0140673657909996
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/
MCEVEDY AND BEARD:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700895/
1980s:
https://me-pedia.org/wiki/1984_Incline_Village_chronic_fatigue_syndrome_outbreak
https://www.latimes.com/archives/la-xpm-1986-06-07-mn-9956-story.html
https://www.acpjournals.org/doi/10.7326/0003-4819-102-1-7
https://www.chicagotribune.com/news/ct-xpm-1987-05-13-8702050466-story.html
https://www.newsweek.com/chronic-fatigue-syndrome-205712
STEPHEN STRAUS:
https://www.rollingstone.com/culture/culture-news/journey-into-fear-part-two-97373/
TABLE OF OUTBREAKS:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6096969/table/Tab1/?report=objectonly
TOM HENNESSY
https://www.newswire.com/patients-around-the-world-mourn/240216
CFIDS AND DR NATELSON:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC120010/
ME/CFS AS UMBRELLA TERM:
https://www.ncbi.nlm.nih.gov/books/NBK284897/
DAVID TULLER, CHRONIC FATIGUE SYNDROME AND THE CDC: A LONG, TANGLED TALE
https://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
DR DAVID BELL: 25-YEAR-FOLLOW-UP OF LYNDONVILLE, NEW YORK OUTBREA:K
NATURE: Reboot For Chronic Fatigue Syndrome
https://www.nature.com/articles/d41586-017-08965-0
Copyright 2020 Scott Schneider Productions - all text written and maintained by Scott Schneider.
HELP SUSTAIN ME!!!
This donation will help ensure that I will be able to maintain Internet and pay for the domain that will keep this website running and continue this mission.
