The History of ME

Brief History of ME Handout

Below are some downloadable adobe pdf files with a brief historical synopsis of ME including some of the more well-known outbreaks like at the Royal Free Hospital in 1955, and Lake Tahoe in 1984.  

Wordcloud for History of ME

ME – Understanding Diagnosis (inclds History) 2020 (13:15)

ME – Understanding Diagnosis (inclds History) 2020 (20:36)

More History Links

ME Outbreaks

“Following is a list taken from The Clinical and Scientific Basis of Myalgic Encephalomyelitis – Chronic Fatigue Syndrome, Byron Hyde, ed. This is one of the best books ever published on ME/CFS. Although it was published more than 20 years ago, it contains a wealth of information that is still relevant today.” ~ AMMES website

De la neurastenia a la enfermedad postesfuerzo: evolución de los criterios diagnósticos del CFS/ME
From neurasthenia to post-exertional disease: evolution of the diagnostic criteria for chronic fatigue syndrome/myalgic encephalomyelitis (English)
by Íñigo Murga and José-Vicente Lafuente – Spain (Basque) 02 Jun 2019
Within this report is a brief history of benign ME and CFS.

​The Hummingbirds’ Foundation for ME (HFME)
What is ME?
by Jodi Bassett

​The Nightingale Research Foundation
Understanding ME

​​​Hillary Johnson tells the history of ME and tells it all; the good, the bad, and the ugly.
​The Banality of Medical Evil
Part One Trigger warning: Red on black in header
Part Two Trigger warning: Red on black in header

Hillary Johnson’s book/website Osler’s Web

7/28/17 Audio Interview by Charles Ortleb (55:11)
Charles Ortleb, the publisher of New York Native and author of Truth to Power talks to Hillary Johnson, the author of Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. They discuss the politics and science of an out-of-control contagious epidemic that the Centers for Disease Control and the National Institutes of Health have been hiding from the public for three decades.

The Why – The Historic ME/CFS Call to Arms
By Hillary Johnson
“If you have acquired Myalgic Encephalomyelitis (a.k.a. “chronic fatigue syndrome”) in recent years, you may have wondered why the U.S. government has done so little to promote research or understanding of this life-destroying disease. If you are looking for answers, The Why was written for you.
Scientific bias, doctors behaving badly, and misappropriation of federal ME research dollars all have played a role in the controversy. In The Why, I unravel deception by the Centers for Disease Control during the first 25 years of the ME epidemic that have fueled all the above.”

A Brief History of Myalgic Encephalomyelitis
by Byron M. Hyde, M.D. (October 2021)
​Within Nightingale’s October 2021 Newsletter, Dr. Hyde discusses “A Brief History of M.E.”, along with “Years of USA Health Centers Bureaucratic Incompetence”.

ME – The New Plague 2
By Jane Colby
This book will be a new version of her first book, ME-The New Plague. She is offering her chapters for free and now has 5 chapters that are available to read. Here is a portion of the last chapter where it relates ME to Polio. A very interesting read.
Ep.1 – In a BBC TV Studio : An introduction
Ep.2 – Tonight with Adam Boulton : Sky TV 22 May 1997
Ep3. – If, Imagine, Definitely
Ep.4 – Consider The Evidence
Is ME New Variant Polio?

Before The Truth Can Get Its Boots On
by Lorelei Hatpinwoman – 21 September 2022
“This essay is brought about by a story that keeps being mistold. As stories go, it is rather an old one. It is about a medical scandal and people with M.E.”

United States

May12.org Ten Year History
Here is a link to 10 years of blogs covering the advocacy work done in the U.S. by MEadvocacy and May12.org from 2012 to 2022. Topics include articles about the NIH (including the intramural study), CDC, CFS advisory committee, Severe ME, IOM/NAM report (SEID), and much more.

Dr. Paul Cheney’s Latest Observations, Research, Treatments, and Thoughts on ME/CFS
by MD with ME Blog (US)
Videos of an April 2013 presentation, given by Dr. Cheney, include the history of the Lake Tahoe outbreak.
Dr. Cheney, who treated patients during the outbreak, passed away on 10 June 2021.
Also, see this 1996 PrimeTime Live video (12:46) which includes an interview with Hillary Johnson author of Osler’s Web, Lake Tahoe outbreak, Dr. Cheney describing the outbreak, Dr. David Bell, researcher DeFrietas and more. This news story shows the lack of recognition by the CDC of the seriousness of the illness of these patients.

United Kingdom

The Royal Free 1955 Twitter account regularly posts historical materials from the Royal Free Hospital outbreak of ME.

Photo of the Royal Free Hospital, located in London, England.

Spotlight on ME/CFS: Who is lobbying whom?
by Jo Hunt – 03 October 2022
This article chronicles the 1993 communication exchanges between M. Aylward, R. Grahame,S. Wessely, and P. White.
“The above exchanges suggest that, if indeed a ‘ME lobby’ exists, it is not a lobby of patients but rather consists of psychiatrists keen to peddle their academic wares to the UK government for professional and financial gain. Other academics have been involved in persuading the government to buy into the psychosocial story of ‘CFS’; the second part of this blogpost series will explore that a little further.”

Horizon – Believe Me Episode
by BBC – 27 June 1988 (50:11)
This video from the UK includes Dr. Ramsay, Sir Acheson, and Dr Weir. Discussion includes early findings of enterovirus.
“To be told ‘your illness is all in the mind’ or ‘pull yourself together’ is no help to people like Mollie Champion -14 years seeking a diagnosis and still not cured, or Michael Mayne. ‘Post-viral syndrome’ ‘Yuppie ‘flu’, ‘Royal Free disease’, or ‘myalgic encephalomyelitis’, has divided medical opinion for over 30 years. Now, thousands of patients are struggling for recognition of this distressing condition, while fighting the fundamental attitudes of doctors to diagnosis and disease. But as some patients suffer, others try a fresh approach: independently of their doctors ….”

ME/CFS: Past, Present and Future
by Wier & Speight (U.K.) (03 August 2021)
​“The history of human civilisation is littered with examples of natural phenomena, including human disease, initially explained by dogma. The dogma is initially created to fill a void in comprehension, but it is eventually replaced by rational scientific understanding. The creators of such dogma are often authoritarian, hierarchical figures who then ferociously defend their own creation. … All of these examples illustrate a tendency to assume that, if no pathological mechanism can be demonstrated, then, by default, psychological disorder must be the problem. Inherent in such an assumption is the arrogant belief that routine laboratory tests infallibly exclude physical disorder.”

“The story of ME/CFS is a prime example of such dogma. Due to the fact that routine laboratory tests for the diagnosis of this condition usually produce “normal” results, the problem must be with the psyche. … In some circumstances, the tendency of exponents to hold on to their dogma is reminiscent of the tenacious way conspiracy theorists are wedded to their particular false narrative. Sadly, the argument over the cause of ME/CFS would probably have remained academic but for one grim reality: treatment based on psychological dogma has damaged patients, some very severely.”

The 1956 Lancet Editorial First Proposing the Name “Benign Myalgic Encephalomyelitis”
A New Clinical Entity
by E.D. Acheson, D.M., M.R.C.P. (26 May 1956)
​”From the purely practical standpoint it would be useful to have a name for this syndrome. As the most helpful single feature in the recognition of this syndrome in the past has been the predominately normal cerebrospinal fluid, the names which have already been suggested, “Iceland disease” and “Akureyri disease,” are not really appropriate. The objections to any but a purely descriptive name for a disorder without a known cause or established pathology are obvious. For this reason, the term “benign myalgic encephalomyelitis” may be acceptable.”

An origin of Myalgic Encephalomyelitis
The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia
by E.D. Acheson, D.M., M.R.C.P. (1959)
​”It is concluded that the disease is recognizable in its epidemic form on clinical and epidemiologic grounds and therefore may properly be considered a clinical entity. In its sporadic form, which is now well documented, the diagnosis should be reserved at present for severe cases with definite neurological signs including paresis* and the characteristic fluctuating course. The disease is probably due to infection by an unknown agent or group of related agents.”
*Paresis: a condition of muscular weakness caused by nerve damage or disease; partial paralysis

From epidemic hysteria to a communicable disease
ME outbreaks can be modelled as an infectious disease: a mathematical reconsideration of the Royal Free Epidemic of 1955
by Water, McDonald, Banks and Waters – 22 July 2020 (U.K.)
Results: “Using the 1927 Susceptible Infected Recovered (SIR) model [Kermack WO, McKendrick AG. Contribution to the mathematical theory of epidemics. Proc Royal Soc London. 1927;772:701–721] for the transmission of disease, we show that the epidemic of a disease of an unknown aetiology at the Royal Free Hospital in 1955, and other similar twentieth-century outbreaks, have the characteristics of a communicable disease. The disease causing the Royal Free outbreak was given the name ‘Benign Myalgic Encephalomyelitis’ by Acheson [A new clinical entity? Lancet. 1956;1:789–790] in 1956, now identified as ME.”

Videos

The Tangled Story of ME/CFS (U.K.) lays out the history of ME and CFS quite well. Most of the time is dedicated to ME, so that would have been best used in the title. (Date unk, 1:11:35)

This Video by Michael VanElzakker presents a good and understandable history of myalgic encephalomyelitis, along with how the vegus nerve operates. (12 March 2020, 26:04)

Lake Tahoe Interview with Erik Johnson by ME/CFS Alert (01 April 2019, 13:09)

This Video by Mary Schweitzer, explains concerns about proposed Institute of Medicine contract that became the report “Beyond ME/CFS”.
This presentation covers a history of ME, including the role Stephen Straus played at the U.S. National Institute of Health that led to the burying of ME. (31 January 2014, 10:28)

The rise-fall-rise of ME activism and clinician availability
ME/CFS Alert: Llewellyn King Interviews Jan Montgomery (23:41)
posted 18 Sept 2020 (U.S.)
Janet “Jan” Montgomery is a disability activist who contracted ME in 1988. She goes through her journey and describes how ME has been downplayed over recent years. Reference is made to a 1993 video “Living Hell: The Real World of Chronic Fatigue Syndrome.”

Video: What About Me?
Directed by Susan Douglas (2018, 85 min)
Available on Amazon video (free to Prime members) and on Vimeo. In English with CC. This documentary covers the history of ME from Florence Nightingale to present day including XMRV and Ampligen.