The objectives 1909
At onset in 1909 four activities are apparent.
- An attempt to get a clear picture of the epidemiology of epilepsy.
Some speakers at the meeting discussing the objectives would be
satisfied with an account of hospitalized patients and those dwelling
in colonies, others stress the importance to have insight in the
numbers of fresh cases and patients living in the community. Some
speakers would like to engage governments in the registration
of people with epilepsy, others feel that the ILAE should first
obtain information from their members in order to be better prepared
to argue governments to set up a registration. One of the objectives
of this activity seems to be the notion that this will help characterize
the hereditary epilepsies and thus assist "diese unerwünschten
Varietäten auszumerzen"45 (to sift out, to
do away with these undesirable varieties).
- To uplift the person with epilepsy and increase awareness that
these persons suffer from a chronic disease, which chronicity
may be prevented by early intervention by specialized health care
personnel and institutions.
- To collect scientific information about the pathology of epilepsy,
its treatment and the social and legal aspects in order to publish
and disseminate this through the official organ of the ILAE Epilepsia.
- To promote the establishment of national organizations concerned
with the execution of the aforementioned activities. At the third
congress in Zurich the secretaries lament that in the list of
nations with an ILAE chapter the names of several important civilized
nations are missing (Doch vermissen wir noch immer in dieser Reihe
viele der wichtigsten Kulturvölker46).
The objectives 1935
When thirty-two doctors representing 14 countries meet in England
in 1935 to revive the ILAE, which had only subliminally subsisted
through the secretary L.J.J. Muskens (Amsterdam) it was decided
that the immediate efforts should be directed towards improvement
of the social condition and the institutional care of persons with
epilepsy. To this end it was agreed that there should be a publication,
issued annually or oftener, acquainting readers with facilities
and with remedial efforts carried on in various countries47.
In the first volume of the second series of Epilepsia Muskens
presents "...the outlines of the scheme for the treatment
of epileptics on national lines as conceived by the International
League."48
In the same volume Lennox gives a vivid picture of the problem:
"In the US there are some 500,000 persons subject to epilepsy.
This is approximately the same number as have diabetes or active
tuberculosis. In Roman days a seizure in the forum caused its dissolution;
now a seizure in a classroom means dismissal of the offending student.
In the US we have only the extremes of care in the home, or in largely
publicly supported institutions into which the dregs of patients
have settled. From the practical point of view, patients with epilepsy
are an unusually valuable group for human experimentation. They
are numerous, and are available to the research staff of the general
hospital; they can usually give intelligent co-operation; they are
pathetically anxious to be experimented upon; they have abrupt and
unmistakable changes from normal to abnormal states. Epilepsy comparatively
speaking has been a neglected field. To the epileptic writhing on
the road of medicine, the investigator has perhaps given a cup of
cold water, but then has passed by to succour those with illnesses
which seemed more likely to reward his efforts. From the humanitarian
point of view, epileptics are peculiarly in need of help."
In this paper49 Lennox also presents "A program
for work in epilepsy".
It is difficult to tweeze apart independent individual contributions
from those inspired or encouraged by the ILAE. Promoting knowledge
about pharmacotherapy of the epilepsies has been a major activity
of the ILAE materializing in 1970 in a Pharmacological Advisory
Committee (renamed Commission on Antiepileptic Drugs). The publication
of "Experimental determination of anticonvulsive activity
of chemical compounds" by H. Houston Merritt and Tracy
J. Putnam certainly fits in with that concern of the ILAE. These
authors present the results of testing 700 chemical compounds by
measuring the amount of current required to produce a convulsive
seizure in cats50.
This brings to mind a comparison with the highly successful Anticonvulsant
Screening Project established in 1975 by the Epilepsy Branch of
the Neurological Disorders Program National Institutes of Health
USA and the University of Utah Colleges of Pharmacy and Medicine51.
Head of the Epilepsy Branch was J. Kiffin Penry (secretary-general
of ILAE 1973-1977 and president 1977-1981).
The four years between 1935 and 1939 did not allow much impact
of ILAE. As Lennox writes:
"The congress that followed (the revival in 1935) in 1939
was in the lovely city of Copenhagen. An all-day outing was held
at Filadelfia, the interesting epilepsy colony. In the midst of
this congress the German forces began their Blitz-Krieg. The banquet
was a tragic affair. There were brave speeches for freedom but silence
on the part of German colleagues. Delegates who were neighbours
of Germany began leaving for whatever fate might meet them. The
responsibility for the yearly issue of Epilepsia was left
on our door-step, where it remained for 10 years, supported by the
American branch (but then the trunk) of the League. Contents of Epilepsia were limited to abstracts of the world literature
and scattered notes of happenings in other countries."52
Influential and trend-setting publications
The first volume of the third series of Epilepsia is prepared
by the Publications Committee of the American League Against Epilepsy
and contributions are all from North America, except for brief reports
from the Argentine, British, Dutch, French and Scandinavian branches
and the Japanese branch in statu nascendi. The first paper is on
the Classification of the Epilepsies by Francis McNaughton (president
ILAE 1961-1965). In 1969 Henri Gastaut (member of the ILAE Executive
since 1953, secretary-general from 1957-1969 and subsequently president
and past-president till 1977) organized a meeting in Marseilles
attended by 120 members of several European branches of the ILAE53 and a preliminary classification was presented to a Commission on
Terminology consisting of representatives of the American and European
branches of the ILAE.
The General Assembly in New York (1969) accepted the first "Clinical
and electroencephalographic classification of epileptic seizures"54.
In 1981 the General Assembly in Kyoto accepted the proposal for
a "Revised clinical and electroencephalographic classification
of epileptic seizures"55.
In Hamburg (1985) a "Proposal for classification of epilepsy
and epileptic syndromes"56, according to the
minutes of the General Assembly "...was accepted as a provisional
interim document, which after further refinement should be presented
again to the General Assembly."
This refinement was published in Epilepsia57 and accepted by the General Assembly in New Delhi (1989).
Up to this date (1999) the ILAE is involved in the adaptation and
refinement of nomenclature and classification. The 1997 Executive
Committee established for this purpose a "Classification
Task Force" with several working groups.
In the first issue of the third series also proceedings of a symposium
on Seizure Mechanisms, chaired by A. Earl Walker (president 1953-1957
and 1957-1961), are reported. Furthermore, a "Survey of
Research in Epilepsy" from the committee on research of
the American branch of the ILAE. From the introduction58 it is evident how much influence members of the ILAE chapters have
exercised in national developments improving knowledge about the
epilepsies and care for people with epilepsy.
Workshops, special symposia and consensus meetings
The relationship between special meetings, symposia on specific
topics or workshops and the ILAE may not always be clear except
for the presence amongst the organizers of a member of the ILAE
Executive. However, increasingly the Executive Committee establishes
commissions (or committees; the nomenclature of Roberts Rules of
Order is not always strictly adhered to). These commissions often
achieve fulfillment of their charge by organizing workshops, which
may result in publication of a monograph or a supplement to Epilepsia.
Even so the relation with ILAE may not be immediately obvious. For
example, the Workshops on Determination of Antiepileptic Drugs in
Bodyfluids (WODADIBOF I-IV) were inspired by problems raised in
the first Commission on Antiepileptic Drugs of which one of the
organizers (Meinardi) was a member. One of the participants in the
first WODADIBOF, Paolo L. Morselli, later was one of the initiators
of the highly successful series of Workshops on Neurotransmitters
in Epilepsy (WONIEP), and other examples can be found but exceed
the scope of this outline. Sometimes a local initiative like the
work of Dieter Janz on pregnancy in women with epilepsy has led
to the establishment of a commission, in casu the Commission on
Epilepsy, Pregnancy and the Child, which in the course of the years
saw its brief shifted to the problems of genetics. Occasionally
the work of a commission will result in guidelines which are published
in Epilepsia, e.g., for the Care of Women of Childbearing
Age with Epilepsy59; for Therapeutic Monitoring of Antiepileptic
Drugs60; for Epidemiologic Studies on Epilepsy61; for
Antiepileptic Drug Trials in Children62; for Neuroimaging Evaluation
of Patients with Uncontrolled Epilepsy considered for Surgery63.
The relationship with the World Health Organization
The International League Against Epilepsy has been in official
relation with the World Health Organization since 1971. Th. Madsen,
honorary president of the League of Nations Health Committee, did
address the first Post-World War I congress in Copenhagen but there
is no indication of collaboration, times certainly were not propitious.
In the November 1955 issue of Epilepsia64 there
is a brief report of William Lennox about a WHO sponsored meeting.
WHO Research Study Group on Juvenile Epilepsy:
"Information and points of views were pooled, and plans designed
to improve the medical and social state of the epileptic in various
countries were discussed. This last item has especial significance
for members of the ILAE and affiliated lay groups."
The fruits of this conference were published as WHO Technical Report
Series no. 130 (1957).
At a joint meeting of the World Federation of Neurology and the
ILAE in Barcelona (1973) the WHO presented a Dictionary of Epilepsy
prepared by Prof H. Gastaut (president ILAE 1969-1973) in collaboration
with an international group of experts (among whom several former
members of the ILAE Executive Committees).
The commission on classification and terminology of ILAE was also
consulted (but not always followed) by WHO regarding the international
classification of diseases.
In an anonymous publication "Initiative of Support to People
with Epilepsy"65 which was prepared in close
collaboration with the ILAE Executive 1989-1993 and aimed in particular
at health workers in the developing world, a list of 15 publications
by WHO related to epilepsy, in the period 1955-1989 is presented.
The 1993-1997 Executive Committee of ILAE together with the Executive
Committee of IBE closed an agreement with WHO to start "Out
of the Shadows" -- a Global Campaign Against Epilepsy.66 This campaign was inaugurated in 1997 at the 22nd International
Epilepsy Congress in Dublin and is still on its way.
Chapter development
The leadership of the ILAE right from onset considered it of the
utmost importance to create national chapters endorsing the objectives
and promoting the aims of the ILAE. It was also expected that a
strong international support would help to get sufficient means
to finance the realization of the projects and at least to guarantee
the publication of Epilepsia. When Elsevier started to publish
the journal the sale became independent of membership of ILAE, although
the members of the American Epilepsy Society had a bulk subscription.
In fact in the long run, although the exact moment can not be retrieved
from the available archives, Epilepsia which up to the present
has always remained the property of the ILAE, started to contribute
to its income. The income from dues never provided the treasurer
much money-power. This was partly to blame on non-compliance by
the chapters which often only remembered to pay dues when a General
Assembly was near and the chapter wished to safe-guard its voting
rights. As the old archives have been lost it is also difficult
to know how the early Executive Committees dealt with this problem.
It can be surmised that at first the criteria for membership were
rather flexible.
The first constitution which was to be voted upon in the meeting
of September 1911 in Zurich, took the line that individuals would
become members of the ILAE:
"As member anyone can be elected who has been or will be engaged
in scientific or practical activity in this field."
However, "Next to the international Executive Committee there
should be a national Executive Committee in all civilized countries.
In the international Executive Committee only members of a national
Executive Committee can be elected. A person who wishes to become
member of the ILAE should inform the secretary of the national executive.
The latter will present the list of membership candidates to the
international executive. A final decision can be taken by the General
Assembly when 4/5 of the votes are in favour. Every member pays
10 Mark per annum. Each member will receive the journal Epilepsia."
The constitution voted upon in Copenhagen 1939 says:
"Membership and Dues. The primary consideration for membership
is an active interest in the objectives of the League. In countries
which contain a branch organization membership in this branch automatically
carries membership in the International League. Members who reside
in countries without a branch carry membership in the League directly.
Membership lapses automatically with non-payment of dues. The dues
shall be such as the members or the officers from time to time may
fix. In countries with an organized branch a portion of the membership
fees may be retained for the use of a branch. Non-medical persons
may be associate members of a branch or may form a separate Laymen's
League at the discretion of each branch."
The Lisbon 1953 constitution stipulated in article IV that:
"Membership in the League shall be by membership in national
organizations primarily devoted to the problems of epilepsy, which
shall be known as branches of the League and, in countries where
no such national organization exists, by direct application to the
League and approval by the majority of the General Assembly. The
national branches should be primarily medical organizations, which
may include in their membership laymen interested in the problems
of epilepsy. The national organizations shall be voted into the
League as branches upon approval of the Executive Committee and
a majority vote of approval of the General Assembly."
In the Lisbon 1953 constitution article IX concerned dues:
"Each branch shall pay to the International League one-third
of the sum collected from the dues of its members. Individual members
shall pay an annual due of $5.- direct to the treasurer of the League.
...The dues shall be used to further the objectives of the League
as authorized by the Committee."
In appendix II are the names presented of the countries from which
the membership of the ILAE was derived.
Awards
The pages of Epilepsia have always been open for the announcement
of prices and awards in the field of epilepsy. However, the ILAE
has also been instrumental in the creation of awards. Those where
by the esteem for the winner was expressed in currency depended
on support from donors. These donors were pharmaceutical companies,
sometimes a national division sometimes the international office.
Thus the Ciba-Geigy Award for the best controlled trial of antiepileptic
drugs was locally sponsored, while from 1993 onwards supported by
headquarters a prestigious ILAE-IBE-Ciba-Geigy Epileptology Prize
was presented. Sometimes the price was initiated by ILAE but awarded
by a different organization like the Warner Lambert/Parke-Davis
Prize for outstanding contribution to the pharmacology of antiepileptic
drugs which was taken care of by the American Society for Pharmacology
and Experimental Therapeutics (ASPET). Some prices were temporarily
(Syva Award) or ad hoc like the Young Investigators Awards negotiated
and granted by the Commission on Education in order to assist young
investigators and in particular promising investigators from the
developing world, to participate in the international congresses.
When IBE and ILAE intensified their cooperation a number of awards
were jointly conferred. These were the Ambassador for Epilepsy Award,
which permits the elected to wear a pin with the candle symbol;
the Social Achievement Award, which did carry a small financial
benefit (for many years donated by the Power of the Small, a Dutch
fundraising organization for epilepsy, founded 1898); and since
1995, however not biennially, a Lifetime Achievement Award is presented.
Epilogue
This booklet could not have been realized without the support of
many who contributed missing pieces (in particular photographs which
were often hard to come by) or corrected mistakes, in particular
the president, the secretary- general and his office manager Irene
Kujath of the present Executive Committee have assisted.
The production costs came from the treasury which is, fortunately,
kept solvent by those who sponsor the fight against epilepsy.
The base of this book was created in 1993/1994 when a young medical
student from Georgia wished to study in the Netherlands. Unfortunately,
about midterm the arrangement she had could not continue due to
changes in the department where she was a guest. As Georgia, and
her hometown Tbilisi in particular have a longstanding interest
in epileptology the present author was asked for help. However,
as patient care in epilepsy depends on communication and as amongst
the several languages this student mastered Dutch was not included,
it was decided to find a more theoretical subject. The, too ambitious,
study of the impact of the ILAE on progress in epileptology was
selected; from this work a first draft known as the Nathalie Goletiani
paper was produced. With my permission a Japanese translation of
this shorter version, edited by Yutaka Fukushima, was published
December 1998.
For those more visually oriented the history of the ILAE and its
journal has been captured in a 30 minutes video-film with comments
about the future by members of the 1997-2001 Executive67.
Those who wish to assist in achieving a more complete document
when the centennial will be celebrated are requested to send their
contribution to the secretary-genetal of the ILAE.
It will not be a surprise that preparing this book and meeting
deadlines would not have been possible without the technical and
moral support of Annemarie Harting.
The Hague, July 1999 Harry Meinardi, M.D., Ph.D. |
