9781405189552_4_C01.qxd 11/5/09 10:46 Page 1 International League Against Epilepsy – 1 the first period: 1909–1952 Simon Shorvon and Giselle Weiss For many years, time shrouded the detail of the origins of early as 1845, and by 1909 every major European country the International League Against Epilepsy (ILAE). Recent had a national psychiatric society. Another important research, however, has revealed much about the incep- element was the opportunity afforded by the large tion and early development of the organisation. In fact international medical congresses for like-minded indi- the picture is now relatively complete, although certain viduals to meet and discuss international cooperation. details are still missing. For instance, we do not really These congresses became a vehicle for such networking understand the motivations of the League’s founders or and a breeding ground for various initiatives, including the financial basis of the organisation or the extent of the launch of the ILAE. the initial connection between the League and Epilepsia. Epilepsy was then a much more stigmatised condition Moreover, for important periods in the later history, than now, linked in the minds of many with madness and significant source documentation has been lost. This is associated with degeneration and in part with criminality. perhaps hardly surprising, but it makes it all the more The iniquity of this reactionary attitude was recognised by important to collate what information exists, for know- many physicians, and the foundation of the League was in ledge of the history of any major organisation is vital for part a response to it. Chronic epilepsy was treated both by its health and wise future development. The purpose of psychiatrists and neurologists – the two specialties were this chapter is to piece together an account of the League anyway closely aligned especially in Central and Eastern through the years, to document what is known and to Europe – and especially by those working in asylums (known try and infer what is not. as alienist physicians). Indeed, the physicians involved The ILAE did not start in a vacuum. In the early 20th in the early epilepsy organisations almost all had largely century, national associations of professionals interested asylum-based practices. in epilepsy were being formed in a number of different It was in this context and setting that, for the first time, countries. Such epilepsy associations were known to have an international professional organisation was established been set up in the United States, Brazil, Holland and in the field of epilepsy. It was known from the outset as Sweden, and were usually loosely linked to larger neuro- the International League Against Epilepsy (or sometimes logical or psychiatric associations which had been in then as the Ligue Internationale contre l’Epilepsie or existence for longer. Epilepsy seems to have led the way Internationale Liga gegen Epilepsie; or more recently among the neurological subspecialties in this regard, simply as the ILAE). and then as now, there was a notable impatience, a feel- ing that epilepsy itself deserved separate representation. In addition to these national associations, other inter- The International Institute for the Study national organisations existed in the fields of general of the Causes and Prevention of Insanity: medicine and in psychiatry. The psychiatric organisations the precedent for the ILAE in particular were well established and driven both by professional and medical social concerns. The American The ILAE had a precursor, the International Institute Psychiatric Association existed in rudimentary form as for the Study of the Causes and Prevention of Insanity 1 9781405189552_4_C01.qxd 11/5/09 10:46 Page 2 9781405189552_4_C01.qxd 11/5/09 10:46 Page 3 Chapter 1 The First Period: 1909–1952 3 (or variations on this name).1 Its aims, statutes and ILAE: 1909–1914 organisational structure were the prototype for the structure and aims of the ILAE, and key personnel The founding of the League at the 16th involved in the planning of the institute (e.g. Augusto International Medical Congress in Budapest Tamburini and J. van Deventer) were also instrumental The League came into being in Budapest at the 16th in establishing the ILAE. This institute was first pro- International Medical Congress, held on 29 August– posed publicly at the 1906 International Congress on the 4 September 1909. It should be no surprise that Budapest Care and Treatment of the Insane in Milan, by Ludwig was the chosen venue, for in this period it was a leading Frank, a neurologist from Zurich (see e.g. Tamburini scientific centre and at the heart of affairs in Europe. It was 1906; Ferrari 1907). Tamburini was appointed president a time of massive change – in the course of a few decades, of a commission to establish the new institute and Frank imperial rule was followed by a republic, parliamentarian- its secretary-general. The idea had much momentum, ism by dictatorship, feudalism by industrial revolution and rapid developments were made in its first few years and the imperial proclamation of war by a foreign army of (Smith 1910; Shorvon et al. 2009). At the second meet- occupation. Hungary was also a world centre of medicine, ing of the commission, at an international neurology and and particularly of psychiatry, with Ern˝o Moravcsik, psychiatry congress in Amsterdam in September 1907, a pioneer neurospychiatrist, the leading figure. Sándor Louis Muskens took the floor to ask whether, in view of Ferenczi was also taking an increasingly prominent role in Frank’s ‘eloquent appeal’ on behalf of mental diseases, it the International Psychoanalytic Association – he became might not also be time to set up a similar international president in 1918 when Budapest was the location of commission to study epilepsy. Thus was the embryonic idea the 5th Congress of the International Psychoanalytical of the League first delivered to a public audience (Bles Association – and was Freud’s closest friend on his secret 1907, 986–987).2 The reaction of the meeting to Muskens’ ‘Committee’. Rapid advances were also being made in other proposal is not recorded, but presumably it was favour- areas of medicine. In 1909, for instance, the discovery of able, for international developments in the field of epilepsy salvarsan as a cure for syphilis was announced by Paul began thereafter.3 Ironically, despite intense activity initially and many meetings, the institute never actually got under way, and the initiative was destroyed by personal enmities and political machinations (as so often in medical affairs). The ILAE, however, a small offshoot of this grander organism, flowered into an organisation which was longer-lasting and altogether more imposing. 1 For example, La Commission Internationale pour l’Etude des Maladies Mentales et leur Prophylaxie (and the equivalent in Italian; see Shorvon et al. 2009). 2 Muskens’s request did not come out of the blue. In his opening address, the congress president included epilepsy among the ‘nervous disorders’ that were the focus of the meeting. He also referred to the Dutch league against epilepsy, which Muskens had helped to found in 1902 (Marie and Ladame 1907). 3 Including the creation of Epilepsia (see Chapter 7). (Opposite) Portraits of ‘epileptics’ from Cesare Lombroso’s Louis Jacob Joseph Muskens, a leading figure in the early ILAE, L’homme criminel (Criminality), 1887. (© BIUM Paris) ca. 1909. 9781405189552_4_C01.qxd 11/5/09 10:46 Page 4 4 International League Against Epilepsy 1909–2009 A Centenary History cerned with institutional care.5 In any event, at a meeting on 30 August, in the Salle Donau of the Hotel Bristol, Rue Maria Valeria, 46 persons met to discuss the founding of an international epilepsy society that would become the International League Against Epilepsy.6 It is worth 4 ‘Ranschburg said the stupidest things’ (quoted in Freud and Ferenczi 1993, 86). Ferenczi was also critical of Robert Sommer and Adolf Friedländer, two of the original members of the ILAE. Ranschburg presented his paper at the congress session where the formation of the League was announced. 5 Otto Hebold, ‘Ueber Epileptikeranstalten’ (‘On Epilepsy Institutions’); and Auguste Marie, ‘Le Retour à la Terre et l’Assistance Curative des Epileptiques et Débiles Adultes’ (‘Rehabilitation and Treatment for Epileptics and Feebleminded Adults’). J. van Deventer touched on epilepsy in his talk on care of the mentally ill. Muskens, who addressed the neuropathology section on the subject of segmental sensory examination, and chaired a session there, also included epilepsy in his considerations (de Torday 1910, 11:xxiv). 6 The attendees of the first meeting of the League on 30 August 1909 were listed in Epilepsia as Anton, Balint, Bonebakker, Bourillon, Medal designed by Hungarian sculptor György Vastagh struck Cabred, Catsarca, Deenik, van Deventer, Donáth, Dubief, Erpstein, to commemorate the 1909 International Medical Congress in Eijkman, Ferarri, Fischer, Frank, Frankl-Hochwart, Friedländer, Budapest, and presented to all attendees at the conference, Fuchs, Giese, Graves, Greidenberg, Hajos, Hebold, Hollós, see pp. 217–219. (Source: Münz Zentrum Rheinland) v. Hovorka, Hudovernig, Juba, Kollarits, Ley, Macpherson, Marie, Medeiros, Meihuizen, Moreira, Obersteiner, Oppenheim, Pel, Ehrlich, the term ‘gene’ was coined by Wilhelm Johannsen, Roubinovitch, Rouley, Sachs, Sommer, Stichl, Szgetti, Tamburini DNA and RNA were discovered by Phoebus Levene, and and Wosinski. It seems to have been of the customs in those days to the secrets of radium were being uncovered by Marie provide only patronymics in the pages of Epilepsia, but we presume – based on subsequent publications and lists (notably the first list of Curie. Epilepsy, though, was rather in the doldrums, and ILAE members in 1911 (Communication 1911) – that these persons possibly one reason for the formation of the ILAE was are (and please note that in some cases this is uncertain supposition) to bolster interest in the neglected condition.