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
“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."
"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
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)
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.
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 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.
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."
An in depth movie/documentary on the worldwide history of ME from Florence Nightingale to 2016. Includes connection to polio, the XMRV story, and inadequate response to outbreaks. The video does not mention the creation of the International Consensus Criteria. (The closed captioning is computer generated and is often not accurate.)
The Hummingbirds’ Foundation for ME (HFME) What is ME? by Jodi Bassett
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.
