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The History of ME
(updated 01/04/21)

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Brief History of ME Handout
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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
 


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. 


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."


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."


Chronic Fatigue Syndrome and ME (1:25:13)
by  Douglas, Hoult and Atherton (posted on 26 June 2020)

​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


​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
Part Two


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.


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

Ep.5 - Is ME New Variant Polio?



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  • Home
    • Current Newsletter
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  • Criteria
    • Severe ME
    • FAQs about ME
    • The History of ME
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    • Primer/Cheat Sheets >
      • Emergency Room Info for ME Patients
    • Patient Resources >
      • Do I Have ME?
      • Pain
      • PENE
      • Sleep Problems
      • Disability
      • Coping with Symptoms while waiting for a Cure
    • Exercise Dangers
    • Medical Specialties
    • Published ME-ICC Studies
  • Orgs
    • International ME-ICC Orgs
    • Australian ME-ICC Orgs
    • Canadian ME-ICC Orgs
    • E.U. ME-ICC Orgs
    • German ME-ICC Orgs
    • Irish ME-ICC Orgs
    • Japanese ME-ICC Orgs
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