1. Research aims and policy
According to our business plan, we aim to promote research into the causes and treatment of EL and to promote awareness of EL in the medical profession, as well as the general public. Given our limited resources, we hope to achieve this mainly by funding small-scale projects where success might subsequently attract larger-scale funding from other sources, or by supporting projects jointly funded together with other organizations from the outset. We also hope to encourage international collaboration as far as possible.
We have identified four key areas of research that we should support, namely causes of EL, diagnosis, currently available treatments, which are mostly palliative or supportive, and potential future treatments. So far, we have supported projects in the first three of those areas by scientists and doctors in the UK, the USA and Russia.
We are always willing to consider requests for funding of new research. However, in the interests of using our funds efficiently, our policy is to consider only projects where indirect or administrative costs will not exceed 15% of the total funding requested.
2. Literature survey
Our initial literature survey was successful in finding papers about EL that have already been published in academic and medical journals, and we found that about 50 cases have been reported since 1980. The results were summarized in a paper by Dr Richard Wharton in December 2003, and this is available on the SCT website.
3. Research at the Institute of Neurology, London
In April 2003, we provided funding to Russell Dale and Andrew Church, working under Dr Gavin Giovannoni at the Institute of Neurology, University College London, for a 3-year project to test their hypothesis that EL is an autoimmune disease. This work was designed to identify the brain proteins targeted by antibodies found in the blood of some EL patients.
Work on EL at the Institute of Neurology has been described in an article called “Encephalitis Lethargica syndrome: 20 new cases and evidence of basal ganglia autoimmunity”, published in the leading journal “Brain” (vol. 127, no. 1, p.21-33, 2004). Dr Giovannoni gave a presentation describing this work and other aspects of EL at our 2005 AGM.
4. Physiotherapy research at the Royce Clinic
In July 2003, we initiated funding of a 3-year programme at the Royce Clinic to evaluate the benefits of intensive physiotherapy for patients with severe brain injury. This important study was funded jointly with the Medlock Trust and the Brownsword Charitable Foundation, and has yielded valuable results.
5. Research at Indiana University School of Medicine, U.S.A.
In December 2005, we approved a grant to Professor Joel Vilensky of Indiana University School of Medicine for preliminary work to develop a database of Encephalitis lethargica signs and symptoms in a form that will be suitable for computerized statistical analysis. This work may lead to faster, more accurate diagnosis of EL.
The software has been developed, and during 2007-2008, the Trust will be supporting work to input data from historical cases of EL into the database and analyze them. Professor Vilensky hopes that careful study of data from the EL pandemic that followed the first world war will throw light on present day cases.
6. Research at Kazan State Medical University, Russia
In late 2006, the Trust approved a grant to Dr. Ravil Mukhamedzyanov of Kazan State Medical University, a leading medical school in Russia, to support him in translating Russian articles on encephalitis lethargica. EL in the Soviet Union had some unusual characteristics, the most significant of which was its persistence in epidemic form into the 1950s. Professor Vilensky and Dr. Mukhamedzyanov are collaborating to prepare an annotated bibliography in English of the Russian EL literature, most of which is not currently available in English. This is in addition to Professor Vilensky’s other EL-related research. A paper describing the results will be published soon under the title "Encephalitis Lethargica in the Soviet Union" (European Neurology in press).
7. Research at London Metropolitan University
In 2007, the Trust agreed to fund a study by Dr Robert Dourmashkin at the Institute for Health Research and Policy, London Metropolitan University, to identify virus particles that have been observed in the brains of some EL patients. This work will be carried out in collaboration with the Armed Forces Institute of Pathology in the US. An electron microscope will be moved to a new laboratory at the university and the Trust will purchase the necessary immunochemical reagents. Dr Dourmashkin has previously collaborated with the well-known virologist, Professor John Oxford.
8. Research at Queen Mary University London
Dr Giovannoni, who recently moved from the Institute of Neurology to become Professor of Neurology at the Institute of Cell and Molecular Science, Queen Mary University London, will shortly be starting a national surveillance programme for EL in the whole of the UK, with the help of the Association of British Neurologists and the British Neurological Surveillance Unit (ABN/BNSU). The Trust has been encouraging and supporting planning for this project for about 2 years, and will be playing a key role in funding part of the salary of the research manager who will administer it. The proposal recently received ethical approval from the UK's Medical Research Ethics Committee. The principal investigators will be Dr Anette Schrag (consultant neurologist at the Royal Free Hospital) and Dr Cheryl Hemmingway (paediatric consultant neurologist at Great Ormond Street Hospital).
In November 2007, we agreed to provide further funding for an extention of the work at The Institute of Neurology on brain antigens that may be related to EL. This work will be carried out by a group of researchers at the The Institute of Neurology and the Institute of Cell and Molecular Science, led by Professor Giavannoni. As described in an edited summary of their proposal, one of the main aims is to investigate whether anti-enolase autoantobodies, which may be associated with recent streptococcal infection, play a role in the pathogenesis of EL.
Return to Research Overview
Links
What is Encephalitis Lethargica, Anette Schrag & Gavin Giovannoni
The "Spanish" Influenza epedemic of 1918 and EL
SCT's Research Programme
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