The International Headache Society: The history of its founding

Background

The history of the birth of an international headache forum is rather protracted. However, it is probably even more turbulent than it is protracted.

Generally, it is a challenge to try to get at the inner nature – the ‘core’ – of a story, to give it the right dimensions and to place it into the right context. Then, if one is personally engaged, the matters of objectivity and keeping a correct distance from the item also come into the picture. As far as the International Headache Society (IHS) is concerned, the present author has a background of being a Nordic headache researcher who, from the beginning, witnessed its development as an attentive and interested person. He soon became convinced of the importance of having an IHS, and in the later phase, he served as an active and devoted worker for this cause.

This story concerns the stepwise development leading to the founding of the IHS, seen through the eyes of the author. The background of the present communication – and of the timing of it – is that, internationally and in recent times, there have been some misconceptions concerning the early stages of IHS. Because the IHS’s international development was followed so closely, the following account ought not to deviate substantially from the essence of the real story.

The sources of this narrative have been: participation in ‘all’ international events pertaining to this matter; the minutes from the Florence 1980 conference by F Sicuteri’s secretary, Rosalynd Pio; a circular by Edgard Raffaelli Jr, from approximately 2002; a couple of rather brief articles by the author concerning the early stages of the IHS; early correspondence regarding the matter and personal notes covering this whole period; and, above all, memories of the specific events.

The North Americans were the pioneers of national headache work: they formed the American Association for the Study of Headache (AASHA) in 1959, which held annual meetings. From 1961, the Americans had their own headache journal – Headache – the first such journal in the world. The Americans apparently had seen the light. One ought to follow them in every respect.

The Scandinavians followed the American example. In the mid to late 1960s, headache interest exploded in the Nordic countries. The Scandinavians founded the Scandinavian Migraine Society in 1968. This society consisted of separate countries’ societies: the Danish, Norwegian and Swedish Migraine Societies. Somewhat later, a Finnish branch was founded. The Scandinavians held annual conferences on a rotating basis. They even had a small journal, with reports from these conferences: Proceedings of the Annual Meetings of the Scandinavian Migraine Society. Young researchers were invited from both sides of the Atlantic for the annual meetings, and one began to realise the usefulness of such meetings for the exchange of ideas.

In several countries, such as the UK and Australia, high-level headache work was being carried out. In other countries, such as Italy, headache work was well underway. As such, there was rapidly growing, multinational headache interest. However, a genuine international headache forum in the true sense of the term would add another dimension.

The first extra-Scandinavian forum in which the idea of an international headache organisation was vented (and in which the author was involved) was the X International Congress of Neurology, held in Barcelona in 1973. In a couple of small groups, during coffee breaks, an international headache forum was hinted at, just to see how the land lay. Responses were diverse: partly enthusiastic, partly neutral, but also – somewhat unexpectedly – partly cautious: it was advised that one must not offend ‘the establishment’. The overall advice was: ‘We do not want another body. Work within already established fora!’ The climate for further activity did not seem right. Nevertheless, some preparatory steps were made, although in a loose and unstructured way and at a snail’s pace.

The first Florence Headache Meeting, 1976

The Italian–Scandinavian headache meeting in Florence in 1976 was a significant step. There were representatives from several other countries attending. At a special session, Poul Gertz Andersson, a neurologist from Århus with a major headache interest, proposed an international headache organisation. The atmosphere around this proposition did not seem to be entirely enthusiastic. Andersson stood against Macdonald Critchley, who chaired the meeting; he also represented the establishment. He obviously was against an international society. Critchley apparently considered Andersson to be his junior, and his resistance was strong during the greater part of the session. Nevertheless, he seemingly reluctantly yielded in the end and ‘permitted’ that a committee of four be formed under Andersson in order to explore prospects in the field. Andersson’s initiative seemed to be a wholehearted one, and it deserved a positive outcome. To many of us, therefore, it was a disappointment when Andersson eventually announced that he had given up. According to one of the committee members, Professor P. Saxena, there were no committee meetings, no initiatives – conservatism seemed to have gained the upper hand.

The official complacency with the unsettled issue of IHS at the following international meetings was probably only apparent. Underlying this, there was dissatisfaction. However, the years went by. There were no new moves, but there still was a lingering hope, as a ‘plan B’ started growing in the author’s mind: if the resistance towards an IHS would be tough even in the future, then make a forceful move – if necessary, alone!

The Florence Headache Meeting, March 1980

For its time, this was a good-sized meeting, with broad international participation, and it proved to be an important meeting. Just before the meeting, some rumours were circulating concerning an initiative by Professor Sicuteri, the essence of which being the construction of an international headache forum. The author chaired one of the sessions and was handed a note, probably from Sicuteri, with the message: could this note, with the actual names, be read to the audience at the first opportunity – a special meeting, with 28 participants, was scheduled for 7p.m., March 18. ‘Others directly and really interested’ were also encouraged to join the meeting, the aim of which was the foundation of an IHS. Before the meeting, many of the original 28 names had dropped out: some apparently were researchers who were not primarily interested in headache. Some new names had been added. The following list contains 23 names (i.e. the names of all those who actually partook in the meeting):

Adler, Charles

Friedman, A.P.

Olesen, Jes

Barolin, Gerhard

Graham, John F.

Poch, Gustavo

Bruyn, G. W.

Heyck, Hartwig

Raffaelli, Edgard Jr.

Carroll, Desmond

Kudrow, Lee

Saxena, Pramod

Critchley, Macdonald

Kunkel, Robert

Sicuteri, Federigo

Diamond, Seymour

Lance, James W.

Sjaastad, Ottar

Edmeads, John

Lundberg, Per-Olov

Spierings, Egilius

Espadaler, José

Nick, J.

(Pio’s original list contained 21 names. The names of Barolin and Heyck have been added by the author, since both virtually spoke at the meeting.)

At the meeting, Sicuteri gave some introductory remarks, but then called upon Critchley to chair the meeting. At the first Florence meeting in 1976, Critchley had apparently characterised a putative international body as a foolish concept, but now, Critchley started out in an extraordinary, rather martial way, calling upon Professor Pramod Saxena, from Rotterdam, a neuropharmacologist dedicated to headache, in approximately the following words: ‘Whenever there is a conspiracy, there always is a ring-leader. And I think that in this case it is you, Dr. Saxena!’ Saxena responded that there was no conspiracy at all, only a desire to unite headache-interested physicians around the world. Critchley then, still in a rather martial way, ordered Saxena to stand up, come to the rostrum and sit down. Saxena afterwards said that he had been treated like a little schoolboy, and that he had felt humiliated. It should be emphasised that this section largely follows Raffaelli’s circular, but is also in conformity with my own recollection of these events. However, this part has been markedly toned in Pio’s minutes. Saxena and the other participants who later were called upon by Critchley were asked why they wanted an IHS. A total of 16 participants uttered their opinion, some clearly, some in a more vague way. Some were largely against an IHS (i.e. 4 of the 16). The majority seemed to be in favour of an IHS. All in all, the impression was that the Europeans were for, while the North Americans generally seemed to be more sceptical towards – or even against – an IHS. What were they sceptical about? Economy! How was this new organisation going to survive? Although it was not expressed directly, the underlying suspicion may have been that an IHS might be a potent competitor for pharmaceutical industry contributions. Some participants were concerned about putative collisions of international meetings, with potential loss of participants. A further concern was that an IHS could interfere with national societies. Germans feared that an IHS could dissociate headache from general neurology. The mood in the whole group seemed to sway a little back and forth during the meeting. In the end, a ‘subcommittee’ that should prepare the ground for an upcoming IHS was on the lips of several speakers, after having been proposed by Graham. Lundberg stated that the author should be the Scandinavian representative. Finally, Raffaelli provided a forceful contribution from Brazil and was wholly in favour of an IHS. Critchley finally took some steps backwards and named the five subcommittee members: Sicuteri, Kunkel, Sjaastad, Carroll, and Raffaelli. Raffaelli mentions in his circular that Critchley was about to discontinue the meeting as being non-productive in the end. Maybe Raffaelli’s interference helped with turning the tide. In the Pio minutes, however, there is no hint that Critchley wavered.

There was no formal voting at the meeting. A vote would have shown a rather clear majority in favour of an IHS. In Sicuteri’s note, he phrased the aim as being the ‘foundation of an International Headache Society.’ So, although this specific aim was not reiterated at the end of the Pio notes, the words of Sicuteri must be considered steadfast.

‘Subcommittee’ probably meant that the meeting’s participants, without further ado, had assumed a role as seniors, or as permanent supervisors, and the chairman, who had only chaired a meeting, would have a more or less permanent function.

What the subcommittee members actually had obtained seemed to be an assignment. In spite of some limitations, the future seemed to look promising. If the subcommittee had not been nominated, plan B would have been activated.

Period from Florence to London meetings (1980–1982)

The next day subcommittee meeting was to be the only one. The meeting was premature. Several items had first to be thought over and be discussed with national societies, and this would take time. Should the national societies exist as hitherto? Who, then, should be members of an IHS: national societies, or should there be individual membership? Who should we actually report to? International representatives! Should the results of our deliberations be given to them in bits, or as a complete plan? The five subcommittee members lived far apart, and physical meetings would be most difficult to arrange. There was no financial basis for such enterprises. Most of our activity would probably have to be done by correspondence.

There were initiatives and there were plans, but unfortunately, nothing could be agreed upon to the extent that it could be sent back to the ‘international representatives’ or to the ‘leader’. Would he then decide alone whether the proposals were satisfactory? The lack of leadership in the committee was apparent. Within the committee, there obviously was a competitive atmosphere, and that seemed to have a noticeable, negative influence on group moral. With time, the internal disagreement escalated. Finally, it appeared to be of no use coming up with any proposal, because one knew that it would be torn to pieces. Instead of optimism, inertia and hopelessness came to prevail. Sicuteri, a subcommittee member and the one who had taken the initiative to the Florence 1980 meeting, complained – and had good reason to complain. The subcommittee had received an assignment that it could not fulfil. Should we openly talk of our lack of progress? Plan B, which had been appeared after Gertz Andersson’s misfortune, reappeared in the author’s mind.

One day, the following information came along from an American source: we ought to go for a European and not for an international headache society, as the Americans already had their own society! We could not continue like this. There was a growing conviction: if insurmountable obstacles arose, an IHS should be created anyhow. At the Florence meeting, there was a convincing majority in favour of an IHS. This was the moral basis on which we acted. So, one day, approximately a year and a half after the Florence 1980 meeting, the author took the reins into his own hands and thereupon ruled in an autocratic way – a usurpation. There exist no documents that tell of the exact date of this. Any meaningful contact with the rest of the subcommittee was, in practice, broken off, without any formal information provided to the members. As such, they were ignorant about what was happening. No one could overrule the plans any more. The fair way to communicate with the other committee members would have been to inform them completely from the beginning and to tell them that, from then on, they would be sleeping partners. However, the author felt strongly that this was not a viable approach: if they had been properly informed, there was more than a theoretical possibility that the whole plan would have been ruined, just like previous suggestions within the committee. The main question was, which was the more important issue: to maintain the contact with the subcommittee members, or to try to ensure that an IHS was formed?

At this time, the view on our task probably changed: was it a task, an assignment? The aim should be an IHS, an undertaking that we would have to fulfill. This sounds more like a mandate. It would be a considerable extension of the assignment, and there would be no reporting to the senior colleagues from the Florence meeting.

Only the author knows what happened with the IHS story from then until after the London meeting in September 1982, which was planned to be a crucial meeting. Nothing unexpected was to be allowed to interrupt the straight path to that goal. If a dictatorship was necessary – and it seemingly was – it does, in hindsight, hopefully not seem illogical that the one with the widest network was to be the coordinator during this relatively short period. It must be absolutely clear: the usurpation was to end at the start of an IHS. A comprehensive network had already been created in connection with the starting up of the journal Cephalalgia. The first issue of Cephalalgia appeared in March 1981 (i.e. more than 2 years ahead of the first IHS congress). It was always the intention that when an IHS had been founded, Cephalalgia should be the official journal of the society. The merger of the two actually took place in 1988. The author contacted a few persons from this network and asked them to be ready to help if some type of trouble should occur. They accepted the plans. In addition, the future president, Dieter Soyka, belonged to this group. During a meeting in Kiel, Professor Soyka gave his advice and moral support. John Graham, a close friend, for some reason or other did not want to take part in this work, but gave his moral support. This was particularly appreciated, since he had partaken in the 1980 Florence meeting, and had possibly been slightly sceptical about an IHS. On the whole, the most important thing was to keep as quiet as possible, to leave few traces and to let time do the work. Questions about the near future were answered in a cryptic and stereotyped way: ‘You will soon see!’ As the London meeting approached, the author became a little more communicative about the plans, but still kept this information within a close circle.

How does the present text concur with the previous statements of the author concerning the origin of the IHS? The previous texts were strongly abbreviated versions. The present text is a rather detailed one. There is accordance between the 1990 (1) and the present text, but the previous text has to be read with a certain degree of empathy in order to be understood. The previous text expressed the problem as to who was at the steering wheel in a metaphorical way – ‘An active nucleolus soon segregated within the committee’ – a nucleolus being a metabolically active part of the cell, and then: ‘the Scandinavians were again given the cue’. Gertz Andersson explored the possibility for constructing an IHS after the 1976 Florence meeting. Who were the subcommittee ‘Scandinavians’? There was one representative from the UK, the US, Brazil and Italy each, and only one Scandinavian. Thus, it was possible to extract from these few lines who was at the helm indirectly, but nevertheless understandably.

When the London meeting drew near, the author selected certain colleagues, according to advice, and urged them to become involved in a special session in order to form an IHS. The committee members were not informed of these plans during the planning phase. It must have appeared as though it came out of the blue.

London meeting, September 1982

The following description of the London meeting itself, and partly also of its aftermath, is rather detailed, because of the importance the meeting turned out to have. It should be understood how narrow the escape actually was! Still, many details will not be attended to in this writing.

As September 1982 was approaching, mixed feelings crossed the mind of the author. On the one hand, the decisive phase was approaching, and for every day that passed, the prospects seemed brighter. On the other hand, assuming the whole responsibility alone was daunting! What if the attitude at the meeting itself would be entirely antagonistic? Many colleagues would then be disappointed. It was better to look upon the situation in a positive way. A rough plan for the meeting was worked out, but not for all possible scenarios!

Then, one afternoon, some colleagues gathered in a relatively small, semi-crowded room. Some were missing; some had apparently been replaced by other colleagues. As the time of the meeting approached, the author urged people to get inside and find a seat. Some were more or less unwilling; some came, but left. Thus, the composition of the group shifted more than just minimally, and this probably also occurred during the meeting itself. This made head-counting meaningless. Some of the participants were unknown, even to the author. Some should probably not have been there. This meant that one had to make do with an unknown factor. Little could be done about that. The total number of participants could have been around 20, perhaps 25. All subcommittee members, except one, were present. The meeting started rather belatedly, because of the foregoing commotion. Since the author virtually summoned the meeting personally, he took the floor. After a few introductory remarks emphasising that the main aim of the meeting was to create an IHS, the discussion began. The situation deteriorated fast, with discussions in smaller groups and loud voices. Generally, several participants spoke at a time. Some were standing; one man was sitting on the floor. There were high emotions. The situation was chaotic. The similarity to a Polish Parliament must have been considerable. This was not at all unexpected; it also demonstrated how hopeless international cooperation in the headache field could be at this time.

It was a play for high stakes. At one stage, the author wondered whether he had gone too far. Had he mastered the situation? However, he definitely felt that time worked for him.

At long last, some of the participants stated that since the author had called the meeting and had given the introductory words, he ought to do something about the situation. It was late – some had evening appointments, which was another reason for irritation. There were no mobile phones at the time to make adjustments to schedules! Finally, and belatedly, the author took the floor. The first utterance in a chaotic situation like that must be crystal clear, so that it will be readily understood by everyone. It should be short and succinct, and it must relate to something that is on the tip of the tongue of everyone. It must allow only one answer: ‘yes’. The author chose to totally neglect the fuss and strife of the past and emphasised what probably united the participants, starting by saying approximately the following: ‘We came here to form an International Headache Society, didn’t we?’ ‘Yes!’ This response sounded almost like a bang – the nicest bang the author had ever heard! Next: ‘I am very glad for your support.’ Time had almost been standing still during these moments, and the excitement was palpable. Events of vital importance for the IHS were happening over the course of minutes, perhaps even seconds. Together with the positive attitude at the Florence meeting, this ‘yes’ constituted a ‘carte blanche’ for the IHS. Experience shows that the first ‘yes’ has a tendency to be followed by subsequent ‘yeses’, provided the phrasing of the utterances is similar to the first one. Of course, the author can no longer remember the exact wording of the items that followed, but it was probably something like this: We were going to use the magnificent ‘yes’ for all it was worth in our forthcoming work with the society, and that work would start soon. Something was probably said about preliminary statutes. There was obviously not enough time to elect a president at this meeting. That election would, therefore, have to be a postal affair. The author had been strongly advised, both orally and in writing, not to arrange an open election: some feared that the election then could be rigged. The author took this advice most seriously. Some names would be selected according to advice. It was strange to witness how afraid some colleagues were; they were afraid that the new society could break asunder, for which reason their names must not be mentioned in connection with it. Some trustworthy colleagues would then shortly draw up a list of only a few names, and they could deliberate in peace regarding who they wanted as interim president. The author would let the result be known. It was emphasised that the author would not be a candidate. Even though it was only an interim president we were going to elect, the selection of the right person was important. This person needed to be entirely trustworthy and uncontroversial and relatively fluent in English. The first congress would probably be next fall. It is uncertain whether the name of what was to be the venue – Munich – was mentioned. Did anyone have anything against this? Certainly! But if anyone had dared to prolong the meeting any more at this late hour, they would definitely have been in trouble, and everyone knew that. The unintended delaying of the start of the meeting had really been a blessing.

The society was afloat, and the date was 23 September 1982. There exist no lists of names of those who were present at the meeting, and no minutes.

The five-member, non-functioning subcommittee finally formally ceased to exist. In reality, it had not functioned at all during its 2.5-year-long existence, but nevertheless, it could still be seen as a functioning, active body, as it had not been disbanded. There even seemed to have been achievements within the group (e.g. the foundation of the IHS!). In 1983, the author had stated: ‘The IHS was the result of the work of a five-member international committee’ (2). This is how it was intended to be, but in reality, the progress took place outside of the committee. Why was this phrasing then used? It should be understood that it was conceived a rather short time prior to the Munich Congress. If the truth had been divulged then – for the first time – there could have been an upheaval (cf. the previous statements regarding the competitive atmosphere within the committee). The statement was, in other words, situational. The wording should have been rephrased, gravely. The author is very self-critical regarding this matter. A true version of the story, but still told in a symbolic way, was written in ‘News in headache’ (1). Solitary members of the committee would have had to admit that they did not have the faintest idea about the decision-making process ahead of the London meeting.

How would the transitory deviation from the straight path be perceived in the headache world? The wrongdoing, if any, would probably soon be forgotten by the ravages of time. Colleagues who were vaguely informed prior to the Munich Congress accepted the author’s actions and encouraged him to continue. When, at a much later stage, some close colleagues, including the subcommittee member Edgard Raffaelli, were informed about the author’s real role in the founding of the IHS, they responded like this: ‘Really? Can it be true? If this were true, why have we not heard about it?’ The author had believed that a sufficient number of colleagues, with time, would have been informed and so could tell the true story. The lack of recognition was not discovered by the author until many years after the Munich Congress.

En route to the Munich Congress, 1983

A 14-member ‘board’ with trustworthy colleagues was selected by the author (again on the basis of advice) and was proposed to act as a ‘guardian’, in case unforeseen difficulties should arise (2). After having experienced the atmosphere during the London meeting and during the subcommittee period, there was undoubtedly a suspicion that the development could go in various unwanted directions. The members of the board were: André Bes, Toulouse; Desmond Carroll, Guildford; José Espadaler, Barcelona; Eero Hokkanen, Oulu; Lee Kudrow, Los Angeles; Y Kuroiwa, Fukuoka; A Prusinski, Lodz; Volker Pfaffenrath, Munich; Frank Clifford Rose, London; Edgard Raffaelli Jr., Sao Paulo; Faustino Savoldi, Pavia; Federigo Sicuteri. Florence; Ottar Sjaastad, Tromdheim; and KMA Welch, Detroit. From which continent should the president stem?

It was felt that they preferably should be a European. Why? At the Florence 1980 meeting, there seemed to have been some disagreement among the Americans as to their attitude towards the IHS. An American might encounter some difficulties in defending their candidature and might even experience some opposition among their fellow Americans during their tenure. With time, this situation would ease, and there would certainly be American presidents – many of them! In the late fall of 1982, the author could congratulate Professor Dieter Soyka in Kiel as the interim president. In order to conduct the necessary routine work until the first congress, a troika was selected, consisting of Professor P-O Lundberg, Uppsala, Dr. Volker Pfaffenrath, a young, aspiring neurologist from Munich, and the author himself. Lundberg was chosen because he was a leading Scandinavian neurologist with an interest in headache. All three planned the scientific programme, and later edited the book of the proceedings from the Munich Congress (3). Pfaffenrath was a natural choice to take care of the local arrangements in Munich, the venue of the first congress, together with his people. Professor Dr. A Schrader, the Neurology Professor at Grosshadern, was the formal leader of the local organising committee.

Except for some minor difficulties after the London meeting, the journey to the Munich Congress was a smooth one. The burden on the president and on the ‘board’ members was therefore a minimal one, but clearly the president was needed as a figurehead in order to demonstrate that the IHS really was a society. Later on, some people in the field have claimed that IHS was founded in 1983 during the Munich Congress, and not in 1982. These were wild ideas. It is interesting in this connection to read the wording of the German Committee’s announcement of the ‘First International Headache Congress’ (4); in other words, half a year ahead of the congress: ‘The Congress will be held under the auspices of the HIS.’ Further evidence that the group was accepted as a society is that, during the remainder of 1982 and early 1983, the author received enquiries from colleagues in countries without a national headache society regarding prospective membership in IHS.

The Florence 1980 headache meeting was arranged by Professor Federigo Sicuteri, a pharmacologist, whose main interest was migraine/cluster headache. It was a separate meeting, not a link in a series of headache meetings. The putative creation of an international migraine forum was not mentioned in the programme. The London meeting was one in a series of headache (migraine) meetings organised by Frank Clifford Rose. The IHS foundation meeting was an absolutely independent event that was arranged by the author and not mentioned in the programme. The Munich Congress was not another one in a series of congresses. It was the first congress that was of the IHS, by the IHS and for the IHS.

The Munich Congress and thereafter

The Munich Congress apparently was a great success, with >200 participants and a high-quality programme. This congress, and this way of communicating in the headache field, probably served as an eye-opener for many of the participants. The German local arrangement committee did a flawless job.

In Munich, were there any harsh attitudes towards the author because of his dictatorship? Not at all. There were congratulations and there was benevolence. No misgivings reached the ears of the author; his own explanation of this is that, to a large extent, the ‘wrongdoings’ were not known/not understood.

The functions of the interim president and the guardians were discontinued. A new president was elected: Professor Eero Hokkanen from Finland. He started his work right away with the statutes, etc. At the proposal of the author, Volker Pfaffenrath, who in the meantime had proven himself to be an able administrator, was elected Secretary General.

For the author, an exciting and engaging period was over in September 1983. He had not precisely expected any thanks for his role in creating the IHS. Much later, on 13 June 1997, the IHS stated in the text accompanying the author’s IHS honorary membership (according to Tim Steiner, this was the first such membership): ‘For unique and meritorious service to IHS in its foundation and subsequently.’

A question that was repeatedly being asked was: why did the author not want to go for the presidency himself in 1982/1983? He invariably responded that he did not want it to be said that he had created offices for himself. He still wants to believe that he worked for the public benefit during that whole period, and only for that. When that period was over, it was natural to quit. And there were young people out there who were prepared to roll up their sleeves and start working.