Publication of Dr Vilensky’s book on EL

Dr Vilensky’s book, which is expected to be called Encephalitis Lethargica: During and After the Epidemic, has been written - the chapters are Introduction, EL during the epidemic period, Epidemiology, Early history of EL, Post-1940 history of EL, Contagion, Chronic EL (post-encephalitic parkinsonism), Levodopa and EL ("Awakenings" patients), Etiology, Neuropathology, Self-Reports, and Conclusions. In addition, Dr. Oliver Sacks has written a Foreword, and the Prologue has been written by Mr. Richard Steele on behalf of SCT. The book is dedicated to Sophie. Coauthors of various chapters include Drs. Sid Gilman, Sherman McCall, Roger Duvoisin, Paul Foley and Keith Josephs. Mrs. Judith Cameron co-authored the Self-reports chapter.

The final review of the entire book has been completed, and the manuscript was sent to Oxford University Press early in March 2010. The tentative publication date is December 2010.
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SCT Encephalitis lethargica surveillance and research programme at BICMS/QMUL: 2009 update

EL Surveillance Programme: The EL surveillance program was set up in 2007, with the support of the Sophie Cameron Trust. The aim of this is to monitor all reported UK cases of EL, and to gain specific information on these cases. There are two arms to this study; the paediatric surveillance programme commenced in December 2007, and the adult surveillance programme commenced in April 2008.

As of November 2009, 4 adult cases and 6 paediatric cases have been confirmed following notifications received via the surveillance programme. We are also requesting information from consultants outside the UK, as this increases coverage and enhances our understanding of the condition.

To date, 8 EL cases have been included on the database, and a further 9 cases are to be included, pending informed consent from the patients or their representatives. It is anticipated that it may take several years of monitoring for the underlying pattern of occurrence to become clear.

Research Programme: A research programme to investigate the functional significance of anti-basal ganglia antibodies (ABGAs) has been supported by a grant from the Sophie Cameron Trust. This supported a laboratory project by Joseph Cohen, an intercalated MBBCh-BSc student. This study was continued via collaboration with Dr Jenny Pocock at University College London, who supervised a project by Kathrin Hoffman, a German MSc student. Further work to test the role of ABGAs will form a part of the PhD project funded by the Sophie Cameron Trust, which Priya Dua started in October 2008. Priya’s work is aiming to establish a working model to study encephalitis lethargica and related post-streptococcal movement disorders. In particular, this will test the role of streptococcal infections and the functional significance of anti-neuronal antibodies studied in the previous project. An outline of her work has been presented as a poster.

Priya will discuss this work at the SCT AGM on November 23rd.

David Holden
November 2009
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Previous News Items:

1. Some thoughts on Joel Vilensky’s upcoming book about encephalitis lethargica.
2. SCT Encephalitis lethargica surveillance and research programme: update
3. Seminar by Professor Vilensky