Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (33 page)

For descriptions of the 1939 World’s Fair, I studied old photos available through a number of historical collections, as well as relying upon Silver’s book, page 259, and Andrew Wood’s
New York’s 1939—1940 World’s Fair
(2004). The
New York Times
also published details about various exhibits at the fair in the article “World’s Fair of ’39 Revisited” (June 20, 1980).

The full letter that Neal wrote to the patients who took part in the vaccine trials is held in the Matheson archives at Columbia’s Health Sciences Library.

The pleas to keep the program open for the sake of the patients was made by Matheson Committee member Hubert S. Howe in a letter dated June 14, 1939. Kroker’s quote was taken from his article “Epidemic Encephalitis and American Neurology, 1919-1940.”

The letter requesting cab fare for Neal (dated October 14, 1940) was found in the Matheson files and archives. Neal retired one year later.

Details about Neal’s life and death came from her obituary,
New York Times
(March 20, 1955).

Details about Tilney’s death and final years came from his obituaries in the
New York Times
and the
New York Post,
both August 8, 1938.

The final division between neurology and psychiatry was described by Jack Pressman in his book
Last Resort
(1998), page 39.

Details about Jelliffe’s later years came from Burnham’s biography of him, page 100. Charles Burlingame published an article, “The Jelliffe Library,”
Science
(April 18, 1941), about the collection of books Jelliffe left. Information about psychosurgery came from Pressman’s book, as well as Shorter’s, pages 227—29. Shorter also described the famous lobotomy cases, like Tennessee Williams’s sister, and I verified information with Tennessee Williams biographies and Kennedy biographical material.

The use of neuroleptics was described by Shorter, page 254, as well as in Whitaker’s book, pages 151-53. Whitaker remarked upon the similarity between the “chemical lobotomies” and the symptoms of encephalitis lethargica.

The quote from Alfred Crosby’s book
America’s Forgotten Pandemic
appears in the afterword, page 325.

The death of William O’Dwyer’s wife during his term as mayor of New York was published in the
New York Times
(October 13, 1946), and her death was reported as cardiac failure resulting from complications, including “Parkinson’s disease condition and post-encephalitis lethargica.”

Neal’s book
Encephalitis,
page 326, quoted Jelliffe: “In the monumental strides made by psychiatry during the past ten years no single advance has approached in importance that made by the study of epidemic encephalitis.” Neal went on to write, “This disease has thereby assumed a role of some significance in providing a means of bridging the known gaps between neurology and psychiatry.”

The neurologist who remarked that no other disease affected so large a portion of its victims for so long a time was C. E. Gibbs. And the 1986 article calling encephalitis lethargica a “disease of momentous importance for three decades” was written by Christopher Ward, “Encephalitis Lethargica and the Development of Neuropsychiatry,”
Psychiatric Clinicians of North America
9, no. 2 (1986).

Von Economo’s quote came from his book
Encephalitis Lethargica
(1931).

Oliver Sacks’s quote was taken from
Awakenings,
the foreword to the 1990 edition. As one patient said to Sacks, “Tell our story, or it will never be known” (BBC documentary and interview with Sacks).

CASE HISTORY SEVEN

Chapter 23: Philip

Philip Leather’s story was part of the BBC documentary “Medical Mysteries: The Forgotten Plague,” which aired in England in 2004.

His physician G. A. Auden (the poet’s father) was one of the close observers of the epidemic in England. He wrote an article, “Encephalitis Lethargica: Its Psychological Implications,”
Journal of Mental Science
71 (October 1925), in which he described not only mental defects caused by the illness, but also the reverse—bright thinking, creativity, and intelligence.

Chapter 24: Gray Matter

Anyone interested in the 1918 influenza pandemic is lucky enough to have three excellent choices on the subject: Alfred Crosby’s
America’s Forgotten Pandemic
(1990); Gina Kolata’s
Flu
(2001); and John M. Barry’s
The Great Influenza
(2004). They are not only factual and thorough accounts of the pandemic but also engrossing narratives.

Information about Dr. John Oxford’s story was taken from Kolata’s book and the BBC documentary “Medical Mysteries: The Forgotten Plague,” aired in July 2004. Kolata’s book covers his groundbreaking work with the 1918 influenza virus, and the BBC documentary details Oxford’s work involving encephalitis lethargica. The BBC also included an article on its website, “Mystery of the Forgotten Plague,” on July 27, 2004 (
www.news.bbc.co.uk
).

Kolata interviewed Oxford in the course of researching her book, and the bulk of the story takes place in chapter 10. Her quote about encephalitis lethargica’s connection to the 1918 flu is on page 294. Information about the experience of Western Samoa and American Samoa was taken from pages 294—95.

Dr. Jeffrey Taubenberger was another physician searching for a connection between the flu and encephalitis lethargica. His group (A. H. Reid et al.) worked in the United States and published the article “Experimenting on the Past,”
journal of Neuropathology and Experimental Neurology
60, no. 7 (July 2001).

All information about Sophie Cameron came from the website dedicated to her:
www.thesophiecamerontrust.org.uk
. Sophie became ill in 1999 and spent nine months in the hospital. Her bout with encephalitis lethargica left her severely brain damaged and physically handicapped. Sophie died in 2006, at the age of twenty-four.

The BBC documentary also told the story of Becky, a modern-day patient who baffled British doctors with her strange symptoms. They tested her for everything from mumps to hepatitis, measles to arboviruses. Once they treated her with steroids, she began a slow recovery, but it took months for her to recover fully. Becky spent the next two years learning to walk and talk again.

I found the story about the high school student from Texas in an online publication by the University of Texas Health Science Center at Houston (July 10, 2007), under the title “Jarrod’s Story.”

Dr. Joel Vilensky’s article “The ‘Spanish’ Influenza Epidemic of 1918 and Encephalitis Lethargica,” available on
www.thesophiecamerontrust.org.uk
, provided details about the relationship between the flu and encephalitis lethargica. The book published in Britain that suggests a definite link between influenza and encephalitis lethargica is Niall Johnson’s
Influenza Pandemic,
published in 2006.

Dr. Russell Dale’s early work with encephalitis lethargica was covered in the BBC documentary on the subject. His original studies linking the disease to strep were conducted with Dr. Andrew Church in London. I also interviewed Dr. Dale in the course of my research, and all details about his work since he left London for the University of Sydney were taken from that interview.

Further information was taken from articles published by Dale and his colleagues: “Encephalitis Lethargica Syndrome,”
Brain: AJournal
of
Neurology
127 (January 2004) and “Contemporary Encephalitis Lethargica Presenting with Agitated Catatonia, Stereotypy, and Dystonia-Parkinsonism,”
Movement Disorders
(November 2007).

Frederick Tilney also refers to von Economo’s research, as well as that of von Wiesner, in isolating gram-positive diplostreptococcus in a case in 1917. Tilney said that the tissue reaction to this infection was inflammation (Tilney and Howe,
Epidemic Encephalitis,
1920).

The article referring to the streptococci from St. Elizabeth’s Hospital was “The Germ of Sleeping Sickness,” Science 78, no. 2018 (September 1933).

Chapter 25: Past or Prologue?

The 2008 study about pandemic flu and the number of deaths resulting from pneumonia came from John Brundage and G. Dennis Shanks’s “Deaths from Bacterial Pneumonia during 1918-19 Influenza Pandemic,” Centers for Disease Control,
Emerging Infectious Diseases,
vol. 14, no. 8 (August 2008). I also consulted a publication by the CDC,
A Commentary on the JAMA Study’s Interpretation of the Influenza Experience in New York City and Chicago, 1918—19
(2008), and an article by David M. Morens and colleagues: “Predominant Role of Bacterial Pneumonia as a Cause of Death in Pandemic Influenza,”
Journal of Infectious Diseases
(2008).

The War Information Office published
The Medical Clinics of North America,
U.S. Army, vol. 2, no. 2 (September 1918), which charted the number of strep and staph infections rampant among soldiers.

The number of scarlet fever deaths came from New York health department records: Arthur Cosby’s
New Code of Ordinances of the City of New York,
adopted June 20, 1916, with all amendments to January 1, 1922.

The reference to “satellite infections” appeared in A. J. Hall’s book
Epidemic Encephalitis
(1924).

As suggested in the chapter, there is no medical evidence linking encephalitis lethargica to the multiple infectious diseases of the 1920s, nor to the vaccines and antitoxins. Those are my own opinions and theories about a disease that has provided so few answers. However, it is not necessarily a new idea. An article/chapter published in 1932 by Dr. Earl B. McKinley in a publication for the Association for Research in Nervous and Mental Disease asked the same question: “But is epidemic encephalitis always due to one cause? Or is this disease caused by a variety of agents?”

Estimates about the number of people afflicted by encephalitis lethargica during the pandemic vary greatly. At the time of the pandemic, most physicians believed that cases were
under
diagnosed because the symptoms were unclear, and an acute infection was not always obvious. Five million was the general estimate for decades. However, more recent work conducted by Joel Vilensky and his colleagues suggests the number of patients could be much lower because physicians of the time period used the disease as a catchall for a number of conditions.

It was A. J. Hall, in his book
Epidemic Encephalitis
(1924), who described an isolated case as early as 1903.

Neal’s book
Encephalitis
reported on the timeline of the epidemic, with earliest dates for the outbreak in Bucharest in 1915, France in 1916-17, and Vienna in 1917.

Epilogue: Virginia and the Forgotten Epidemic

W. H. Auden’s poem is entitled “Nothing to Save.” As he was the son of Dr. George Auden, who treated a number of British children with encephalitis lethargica, I was intrigued by the fact that his father’s work may have influenced some of his own poetry.

The quote from Sacks’s
Awakenings
appeared in the prologue, page 22, of the 1990 edition.

My grandmother, Virginia Thompson Brownlee, passed away in 1998 in Dallas, Texas. Her death was not related to her case of encephalitis lethargica or any complicating factors.

BIBLIOGRAPHY

HISTORICAL COLLECTIONS

AUGUSTUS C. LONG HEALTH SCIENCES LIBRARY, COLUMBIA UNIVERSITY

Archives of Neurological Institute

Matheson Commission Files

Melvin D. Yahr Personal Papers and Manuscripts

Walter Timme Papers

Henry Alsop Riley Papers

KINGS PARK HERITAGE MUSEUM COLLECTION

MUNICIPAL ARCHIVES OF THE CITY OF NEW YORK

Annual Report of the Department of Health of New York City for the Year 1914.

New York City Sanitary Code,
Sections 87, 89, 90.

NATIONAL LIBRARY OF MEDICINE, History of Medicine Division

Memorandum on Encephalitis Lethargica
(Great Britain, Ministry of Health, 1924).

Health, Disease and Integration: An Essay based on a Study of Certain Aspects of Encephalitis Lethargica (Henry Pratt Newsholme, 1929).

NEW YORK ACADEMY OF MEDICINE

Epidemic Encephalitis: Etiology, Epidemiology, Treatment, by the Matheson Commission (first report, 1929; second report, 1932; third report, 1939).

Charles Loomis Dana Papers, volume 4, case #62.

State Hospital Quarterly,
volumes 6—11, 1920—1930.

Minutes and Proceedings of the New York Neurological Society,
1918-1924, 1925-1934.

Committee on Public Health, Minutes, March 17, 1919.

NEW YORK PUBLIC LIBRARY, Humanities and Social Sciences Library

New York City Newspapers Collection

BOOKS

Acute Epidemic Encephalitis: An Investigation by the Association for Research in Nervous and Mental Diseases: Report of the Papers and Discussions at the Meeting of the Association, New York City, December 28th and 29th,
1920. New York: Association for Research in Nervous and Mental Disease, 1921.

Alexander, Franz, Samuel Eisenstein, Martin Grotjahn, eds.
Psychoanalytic Pioneers.
New York: Basic Books, 1996.

Allemann, Albert.
The Medical Interpreter: The Interpretation and Translation of the World’s Practical Medicine and Surgery.
Chicago: Pepin and Pridgen, 1921.

Altman, Lawrence.
Who Goes First? The Story of Self-Experimentation in Medicine.
1986. Berkeley: University of California Press, 1998.

Andrews, Roy Chapman.
Under a Lucky Star: A Lifetime of Adventure.
Speath Press, 2007.

Barry, John M.
The Great Influenza: The Epic Story of the Deadliest Plague in History.
New York: Viking, 2004.