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ME & CFS Epidemiology & Epidemics

"We can rest assured that this serious disability can arise (like polio) from an initially trivial infection which has epidemic and pandemic potential...."
-Dr. E.G. Dowsett-
A Rose By Any Other Name

Who gets ME/CFS?
Is ME/CFS contagious?
Epidemiological Research Articles
M.E. Epidemics

Who gets ME/CFS?
Anyone.  Most frequently stricken are middle aged adults, though adolescents and even children can get ME/CFS.  Due to flaws in the current research definition and differing study methods or settings, worldwide prevalence estimates have varied widely.  But recent research has the number closing in on a million Americans, with similar statistics in other countries in proportion to their population.  The strike rate is higher for women, but approximately 30% of ME/CFS victims are male.  Historic reports of epidemics include the number of children afflicted - usually with equal gender distribution - but few studies have been done on ME/CFS prevalence in children.  ME/CFS affects more Americans than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, and most recent estimates place economic impact of ME/CFS in the U.S. at $18 to $24 billion annually.  More importantly, nearly 90% of patients have not been properly diagnosed. Recovery rate is poor, estimated between 5% and 10% of patients attaining total remission.  Patients
can be as functionally impaired as those suffering from diabetes, heart failure and kidney disease, and are often as severely disabled as those with heart failure, late-stage AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive pulmonary disease).  The UK reports 25% of ME patients are severely disabled, housebound and/or bedbound.  The rate of mortality may be low, but the degree of patient suffering and cost to society is high, as patients remain disabled for years and even decades.  See below for several recent articles on ME/CFS epidemiology, and see the DePaul Univ/Jason Research page for a summary of some recent epidemiological studies.

Is ME/CFS contagious?
With a long history of epidemics, one would think the simple answer is "Yes."  Controversy rages about the transmissibility of ME/CFS, and whether it is one organism or any of several organisms or environmental factors/toxins that trigger the  disease and perpetuate it to chronicity.  But the epidemic history strongly supports a contagious factor, at least in the acute phase of sudden onset ME/CFS.  Why some patients recover from the acute infection and others never do, or remit and relapse, are severely disabled or able to function albeit at a reduced level is not known.  One study reports high prevalence of ME/CFS in family members living in the same household, interestingly the highest prevalence between non-genetically related contacts, such as spouses.  The Immunology Research page, Dowsett, Ramsay, Historic, Pediatric and Hyde Definitions pages of this website all touch upon the viral and contagion aspect of ME/CFS.

Below is a summary list of 63 recorded similarly described epidemics around the world, as well as reports of sporadic cases of the same disease we've come to know as ME/CFS.  The original complete list was compiled primarily by British physician Dr. J. Gordon Parish, based on bibliographies published by Acheson, Henderson and Shelokov.  Dr. Byron Hyde added the more recent epidemics.  The complete list including citations can be found in Dr. Hyde's textbook.

   

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Epidemiology


"Itís amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives."
-Dr. Judy Mikovitz-


"One universally accepted case definition, both for diagnostic and research purposes, would help uncover the face of CFS."
-Dr. Leonard Jason-


"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!"
-Dr. Marc Loveless-
who testified under oath before Congress in 1995.


"In my experience, [ME/CFS] is one of the most disabling disease that I care for, far exceeding HIV disease except for the terminal stages."
-Dr. Daniel Peterson-


Note:  CFS research by the U.S. government is conducted at the Centers for Disease Control by the Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases.


Online Medical Dictionary


 

Background image:
artist renderings of
Coxsackievirus & Echovirus

 
         
 

Epidemiological Research Articles

The Economic Impact of ME/CFS: Individual and Societal Costs
Jason LA, Benton MC, Valentine L, Johnson A, Torres-Harding S. (2008)
"... the direct and indirect cost of ME/CFS to society was estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the tertiary sample."

Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients Journal: Journal of Chronic Fatigue Syndrome, Volume: 13 Issue: 1, Page Range: 3-13 Authors and affiliations: Rosemary A. Underhill MB, BS, MRCOG, FRCSE, Consultant, New Jersey CFS Association, Upper Saddle River, NJ, 07458, Ruth L. O'Gorman, Clinical Physicist, Department of Neuroimaging, King's College Hospital, London, UK "The prevalence of CFS was higher in genetically unrelated household contacts and in nonresident genetic relatives than in the community, indicating that both household contact and genetic relationship are risk factors for CFS."  (See a summary of the full article at Immune Support. com)

A community-based study of chronic fatigue syndrome. Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M., Plioplys, A.V., Taylor, R., et al. (1999). Archives of Internal Medicine. 159, 2129-2137.  "The highest levels of CFS were consistently found among women, minority groups, and persons with lower levels of education and occupational status.  Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings."

Estimating rates of Chronic Fatigue Syndrome from a community based sample: A pilot study. (Abstract) Jason, L.A., Taylor, R.R., Wagner, L., Holden, J., Ferrari, J.R., Plioplys, A.V., Plioplys, S., Lipkin, D., & Papernik, M. (1995). American Journal of Community Psychology, 23, 557-568. "Different definitions of CFS were employed, and higher rates (0.2%) of CFS were found than in previous studies."

   
 

M.E. Epidemics
The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Edited by Byron Hyde, M.D.

Pages 176-186 summarized by L. Ventura

1934
1.  Los Angeles City and California State, USA
Epidemic among personnel at L.A. County Hospital, Ruth Protection Home and throughout California, paralleling poliomyelitis, often diagnosed as atypical poliomyelitis, sometimes including arthropathy.

1936
2.  Fond-du-Lac, Wisconsin, USA

An outbreak of "encephalitis" in St. Agnes Convent.

1937
3.  Erstfeld, Switzerland
Outbreak described as "Abortive Poliomyelitis."

4.  St. Gallen, Switzerland
Outbreak in Frohburg Hospital described as "Abortive Poliomyelitis."

1939
5.  Middlesex, England
Outbreak at Harefield Sanatorium - "Persitent myalgia following sore throat."

6.  Degersheim, St. Gallen, Switzerland
Outbreak described as "Abortive Poliomyelitis."

1945
7.  University Hospital of Pennsylvania, USA
Epidemic described as "pleurodynia with  prominent neurological symptoms and no demonstrable cause."

1946-47
8.  Iceland

"Mixed epidemics of poliomyelitis and a disease resembling poliomyelitis with the character of the Akureyri Disease."

1948-49
9.  North Coast Towns, Iceland

"A disease epidemic in Iceland simulating Poliomyelitis" in three separate towns during this time.

1949-51
10.  Adelaide, South Australia

Outbreak of a disease resembling poliomyelitis.

1950
11.  Louisville, Kentucky, USA

Outbreak in the Nurse's Training School of St. Joseph Infirmary, later described as "epidemic neuromyasthenia."

12.  Upper New York State
Outbreak described as resembling the "Iceland Disease...simulating Acute Anterior Poliomyelitis."

1952
13.  London, England

Outbreak at Middlesex Hospital Nurses' Home described as "Encephalomyelitis associated with Poliomyelitis Virus."

14.  Copenhagen, Denmark
Outbreak described as "epidemic myositis."

15.  Lakeland, Florida, USA
Outbreak described as epidemic neuromyasthenia.

1953
16.  Coventry and Coventry District, England

"An illness resembling Poliomyelitis observed in nurses."

17.  Rockville, Maryland, USA
Chestnut Lodge Hospital student nurses described with poliomyelitis-like epidemic neuromyasthenia.

18.  Jutland, Denmark
Outbreak of "Epidemic encephalitis with vertigo."

1954
19.  Tallahassee, Florida, USA

Bond JO.  A new clinical entity?  Lancet 1956; 2:256.

20.  Seward, Alaska
Outbreak described as "Benign Myalgic Encephalomyelitis (Iceland Disease)."

21.  Berlin, Germany
Among the British Army, a "further outbreak of a disease resembling poliomyelitis."

22.  Liverpool, England
Outbreak among medical and nursing staff in a Liverpool Hospital.

1955
23.  Dalston, Cumbria, England

"...an unusual disease seen in epidemic and sporadic form in general practice in 1955 and subsequent years."

24.  London, England
Famous outbreak of benign myalgic encephalomyelitis among Royal Free Hospital staff.

25.  Perth, Western Australia
"Virus epidemic in recurrent waves."

26.  Gilfach Goch, Wales
Outbreak of Benign encephalomyelitis.

27.  Durban and Durban City, South Africa
Outbreak among nurses at Addington Hospital called "The Durban Mystery Disease" describing neuromuscular dysfunction, and epidemic myalgic encephalomyelopathy, including sporadic cases in Johannesburg of a outbreak resembling poliomyelitis.

1955-56
28.  Segbwema, Sierra Leone
An outbreak of encephalomyelitis.

29.  Patreksfordur and Thorshofn, Iceland
Unusual response to poliomyelitis vaccination.

30.  North West London, England
Outbreak of acute infective encephalomyelitis simulating poliomyelitis among a residential home for nurses.

1956
31.  Ridgefield, Connecticut, USA
 An epidemic of neuromyasthenia.

32.  Punta Gorda, Florida, USA
An outbreak of epidemic neuromyasthenia.

33.  Newton-le-Willows, Lancashire, England
Outbreak described as "lymphocytic meningo-encephalitis with myalgia and rash," "An outbreak of a disease believed to have been cause by Echo 9 virus," with other varying descriptions.

34.  Pittsfield, Williamstown, Massachusetts, USA
Outbreak of "epidemic neuromyasthenia" later described as benign myalgic encephalomyelitis.  (Included in this summary are sporadic cases in Hygiea, Sweden, with descriptions of encephalitis, meningitis or poliomyelitis; Coxsackie B and Echo Virus infections; benign myalgic encephalomyelitis.)

1956-57
35.  Coventry, England

Outbreak described as epidemic malaise and benign myalgic encephalomyelitis.

1957
36.  Brighton, South Australia

Outbreak described as "Coxsackie, Echo Virus meningitis and mylagic encephalomyelitis", "Epidemic myalgic encephalomyelitis," and "Benign myalgic encephalomyelitis."

1958
37.  Athens, Greece

An outbreak of benign myalgic encephalomyelitis in a nurse's school, "periostitis and arthropathy noted."  (Included in this summary is an outbreak of benign myalgic encephalomyelitis in Switzerland.)

1958-59
S.W. London, England

Reports of sporadic cases of myalgic encephalomyelitis.

1959
38.  Newcastle upon Tyne, England

Outbreak of benign myalgic encephalomylitis.

N.W. London, England
Reports of sporadic cases of influenza-like illness

England
Article describing sporadic cases and "The psychiatric sequelae of Benign Myalgic Encephalomyelitis."

1961
Basel, Switzerland

Sporadic case of benign myalgic encephalomyelitis described.

1961-62
39.  New York State, USA

Outbreak described as epidemic neuromyasthenia in a convent in New York State.

1964-66
40.  N.W. London, England

Outbreak described as epidemic malaise and epidemic neuromyasthenia.

41.  Franklin, Kentucky, USA
Outbreak of "neurmyasthenia" in a Kentucky factory, possibly due to mercury exposure.

1965-66
42.  Galveston County, Texas, USA

Outbreak described as "Epidemic Neuromyasthenia Variant?" and "Epidemic Diencephalomyelitis," the latter describing neuropsychiatric, cardiovascular and endocrine disorders.

1967-70
Edinburgh, Scotland

Sporadic cases resembling benign myalgic encephalomyelitis.

1968
43.  Fraidek, Lebanon

Report on an epidemic of benign myalgic encephalomyelitis.

1969
44.  State University of New York, USA

Medical Centre - report of epidemic Neuromyasthenia and "unidentified symptom complex."

1970
45.  Lackland Air Force Base, Texas, USA

Epidemic Neuromyasthenia reported.  "A syndrome or disease?"

1970-71
46.  London, England

An outbreak of "epidemic neuromyasthenia" among nurses a the Hospital for Sick Children, Great Oromond Street.

1975
47.  Sacramento, California, USA

"200 hospital staff in the [Mercy San Juan Hospital] fell ill in August September 1975.  The epidemic appears to have spread to the children of the hospital staff and from there to the children's teachers.  43 have been seriously disabled with chronic illness from 1975-1992" [at publication of this text].

1976
48.  Southwest Ireland

Reports on Mylagic Encephalomyelits and epidemic neuromyasthenia in this region.

1977
49.  Dallas-Fort Worth, Texas, USA

"Epidemic Neuromyasthenia" reported.

1978
[Ed. note: Dr. Hyde's text notes that the first major M.E./CFS Symposium was held at the Royal Society of Medicine in London in this year.  M.E. aka epidemic neuromyasthenia, viral relationships to this disease, biochemical abnormalities in patients and other subjects were discussed by experts such as Shelokov, Ramsay, Richardson, Behan, Parish and others.]

1979
50.  Southampton, England
Outbreak of M.E. in a girls' school.

1980-81
51.  West Kilbridge, Ayrshire, Scotland

M.E. epidemic reported in a rural medical practice.

1980-83
52.  Helensburgh, Scotland

Coxsackie B outbreak reported in a general practice.

1981-82
Stirlingshire, Scotland
Sporadic cases of M.E. reported.

1982-84
53.  West Otago, New Zealand

Outbreak first described and an "unexplained illness," later as M.E.  Included here are outbreaks in Dunedin and Hamilton New Zealand.

1984
"From 1984 until 1992 [at publication of this text] an endemic period occurred in which an usually large number of cluster and epidemics of M.E./CFS have been recognized in North America.  After an apparent initial increase in the morbidity in 1983 there seemed to have appeared in late summer of 1984 an unprecedented increase of sporadic and epidemic cases across North America.  Although certain geographical hot spots seen to have taken up much of the medical interest, this endemic situation probably represents an unusual and unremitting morbidity in all areas of the United States and Canada." -Dr. Byron Hyde-

54.  Incline Village, Lake Tahoe, Nevada, USA
"A chronic illness characterized by fatigue, neurlogic and immunologic disorders and active human herpesvirus type 6 infection."  "This community epidemic, apparently started in a girls' basketball team, then involved primarily teacher in at lest three high schools, and then large numbers of the community."

55.  Chapel Hill, North Carolina, USA
"Epidemic amongst members of The North Carolina Symphony Orchestra.  Low NKC [Natural Killer Cells] associated with high yield of lymphoma, astrocytoma, glioma."

56.  Montreal, Quebec-Ontario, Canada
"Over 500 cases of M.E./CFS documented during August-November 1984 period.  This endemic was active in all parts of Canada during this period and appears [to] have maintained its activity until the time of writing in 1991."

1984-85
57.  Truckee, California, USA
M.E. epidemic involving teachers and students.

1985
58.  Lyndonville, New York, USA
M.E. epidemic in a rural community involving children and adults.

59.  Yerington, Nevada, USA
"In the same area [not far from Truckee, California] an M.E./CFS-like epidemic reputedly occurred in a reservation of American Native people."

1986
60.  Placerville, California, USA
"Outbreak of chronic fatigue syndrome 'coincident with a heavy contamination of the local unfiltered water supply'."

1988
61.  Sonora, California, USA
"More than 35 children and adults were diagnosed with M.E. in the mountain country 100 miles from Lake Tahoe.  Many of these patients were associated in some way with Columbia Community College."

1989
62.  Roseville, California, USA
Rosedale Hopital reported 11 cases of M.E./CFS among staff.

1990
63.  Elk Grove, California, USA
M.E. epidemic among teachers and students.

   
 

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