Our opinion...

People smiled a lot at that and we got clear messages many times that we were talking rubbish.

Now it looks like the debate has turned around. A survey of the American home pages of the five producers of triptans for the Danish market shows that four of the five have a page where external triggers are discussed in detail and food is no. 1, no. 3 twice and no. 5 on the lists of triggers on these home pages.

Maybe it´s just ´the times´ that are now with us. Maybe completely different factors have entered the game. We´ll never know. But it´s nice to think that it may have been the Danish Migraine Association´s efforts that have made the world realise that we don´t just have to accept that ´we have migraine´. We can help ourselves to get a little better if we know one or more of our trigger factors.

If an American migraineur can show in court that information has been kept from him or her that he/she could have done something to feel better, even though it was well-known, it can cost the industry large amounts of money. The development is moving in the direction where producers of e.g. food could be sued for a destroyed life if it can be shown that a product has given a lot of migraine attacks. So the pharmaceutical companies´ information about e.g. food may be an attempt to avoid such a complaint.

Regardless of the motives behind the information, the Danish Migraine Association is satisfied that food is now a recognised trigger of migraine.

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1) have your activities been affected by headache during one or more days in the last 3 months?

2) do you have nausea or do you vomit when you have a headache?

3) are you bothered by light when you have a headache?

If you answer yes to two of these questions, it is very probable that you have migraine. That was the conclusion of a paper in the journal Neurology in August 2003. This simple diagnosis could make life easy for GPs who need no longer remember the whole of the official definition of migraine.

GlaxoSmihtKline are now attempting to get permission to market Imigran on the basis that patients who answer the three simple questions at a pharmacy get a ´fast diagnosis´ and therebye have the possibility of buying prescription medicine.

But the questions don´t show if we

a) have high blood pressure, have arteriosclerosis or have had blood clots

b) use anti-depressives or ergotamine-based preparations

c) are pregnant or breast-feed.

As long as the pharmacy has no duty to ensure that the patient is ´suitable´ to use triptans, it is very risky for patients to accept the ´fast diagnosis´ and the triptan tablets. On the other hand, it can be very handy for patients who have already been prescribed triptans to be able to avoid having to talk to the receptionist as the GP often doesn´t even look at us.

Pharmacies (in Denmark) already know if a patient has already been prescribed a particular medicine and could easily supply triptans to migraineurs who, within e.g. the previous half year, have had triptans prescribed.

In the past we have criticised doctors who just renew prescriptions for triptans for very long periods without looking at their patients. We go through many changes in 10 years, in e.g. blood pressure, and triptans could be risky for us.

It is therefore important the we don´t go for very long between being looked at to see if we still have a reasonable blood pressure and haven´t developed other conditions that affect how triptans work.

We must therefore insist that triptans should only be taken after an agreement with a doctor. But the pharmacy could easily administer part of the supply and save us all from a little bother.

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The (Danish) government’s prevention plan has nothing to do with migraine

It sounds fine to direct efforts so that our doctors will be better prepared to convince us all that a healthy life-style is for everyone´s benefit. Heart disease, cancer, depression, asthma, smoker´s lungs, osteo-arthritis and osteoporosis can all be helped to some extent from a sensible life-style with more exercise, healthy food and less smoking etc.

A healthy life-style is important, both for the total expenditure on health care and for the individual. Probably many billions could be saved from the health budget if we all ate a littly more healthily, left the ciggies on the shelf and exercised a bit more.

The 8 diseases are obvious ´great´ diseases of the population. But it looks as if those 8 will swallow the whole of the government´s effort in the field of disease prevention. As always, when things are focussed in this way, other areas are left out, so there will be no public information about what doctors can do to help us migraineurs, apart from the prescription pad.

Migraine will, therefore, get no part of the available money, even though it is a sickness that leads to large expenditures and that can, to some extent, be avoided with small changes in life-style (especially: look carefully at your hormone pills and eat food that doesn´t contain biogene amines).

As often before, the ball lies at the feet of the patient associations. It´s still us who have to ensure that doctors become more conscious that migraine can be minimised in many migraineurs through a life-style that takes account of our tendency to get migraine. Not a little task for a little society.

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Migraine has lost its innocence

Migraine has lost its innocence. An attack is not just a few hours of discomfort. It is an accumulative disease - one that causes more damage or risk of damage with every attack; and the damages don´t disappear afterwards.

The brain damage can be (tiny) lesions in the white brain tissue, apparently because the blood supply is reduced during an attack, so part of the brain dies. The lesions are ´sub-clinical´ - which means that we aren´t visibly affected. We can still think, speak and move around. Further our sight is reduced because the visual cortex (at the back of the brain) doesn´t work optimally. The individual migraineur may not be aware of any problem, because it develops slowly and we can still see pretty well.

As migraineurs have a tendency to develop brain damage that doesn´t repair itself after the attack is finished, we should use every means possible to avoid attacks. Most of us can control our attacks using triptans, and have a reasonable time. That´s fine, but the new understanding shows that it is even more important to try to avoid attacks. Avoiding the attacks is the only way we can reduce the risk of developing brain damage.

We don´t know whether the brain damage is caused by the migraine or by the medicine. None of the studies has split migraineurs into users of triptans, users of analgesics, users of preventive medicine and ´naive´ migraineurs (doctor´s word for migraineurs who haven´t taken any particular type of medicine). So we don´t actually know what is caused by migraine and what is caused by medicicne. The Danish Migraine Association now hopes that from now on it will appear in flaming letters on the inside of every migraineur´s and migraine doctor´s eyelids that it is always better to avoid attacks than to treat them. We must have research into how we avoid attacks and migraineurs must be informed about what they can do themselves. That is the only way we can be sure not to subject ourselves to an increased risk of brain damage.

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We are hungry for knowledge

More information in the media is something we really would like. There are still millions of Danes who have only a little understanding of migraineurs´ problems and the media are the only way we have of telling them about our illness. There could also be an occasional GP who could be brought more up to date if there were greater interest in the media about our disease. It´s fine to read about our (or our friend´s) illness in newspapers and magazines, but it´s even better if a little real information is provided in the story too. Titillating stories may be entertaining but we can´t really use for anything important. On the other hand, we really need the media´s support to gain general acceptance that migraine is a disease that gives problems to individuals but that can be controlled so that we can live a normal life. Real migraineurs manage their life well, but don´t dare tell colleagues and other folk that now and again they just need a little peace and quiet for an hour while they are dealing with an attack. Migraine affects up to 25% of economically active women and around 6% of men of working age. It´s unbelievable, but in many places migraine is still a ´hidden´ disease; we need the media´s support to reverse this picture, so that migraine becomes something that can be talked about around the lunch table at work without that having adverse effects on your career.

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Sender creates the message

A net surfer who looks for information about migraine must be alert. It can be extremely difficult to identify the sender of the information. In the mall stream of valuable information it may be even more difficult to notice which information is not provided. The missing information may be kept from us quite deliberately – as it is clearly the sender who chooses what to present. And the reader is free to make his or her own judgement.

As a rule of thumb home pages with lots of glamour and graphics are made by someone who wants to sell something, while simple sites with no fancy stuff often are created by somebody who has a technical message to bring, but not much money for design. Sites made by universities and official institutions are often bland but rich in technical information. But like in all other ranks of life, there are also exceptions, and some official sites are visually pleasing and some sales promotions are bland.

The net is good for us as source of information – but only if we can discriminate between sales promotion and information. Surfing the intelligent way is not easy.

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Manipulation of research results

Up to 2001, four scientific papers have been published on the effect on migraine of these hot winds. Three were published by a doctor team from Canada (1), (2) and (4), and one (3) by a team from France (the same type of wind blows down from the Alps).

The Canadian doctors found in 1995 that there was no particular reason to believe that the chinook provokes migraine attacks (4). The same result was repeated in France in 1997 as it is always a good scientific principle to repeat a measurement to make sure it is valid. 304 migraine patients kept diaries for a whole year and recorded the wind as well as their migraines (2). The French and the Canadian scientists agreed - migraine and the warm winds did not have much relationship.

But then the Canadian researchers asked thirteen migraineurs in 1997 to keep records of their migraines during a spell of hot summer weather, and they found that there was a small tendency for these thirteen selected migraineurs to have slightly more attacks either just before the wind began, or while the wind blew (2). This story was then blown out of all proportions and reported in the local media and at scientific conferences, and soon everyone ´knew´ that the chinook gives migraine attacks!

In 1999 the same group of Canadian doctors repeated the project, this time with 75 patients. As was the case for the thirteen patients in the first project, there was a small increase in number of attacks while the hot wind blew, but it was very clear that the patients were convinced that they got attacks from the wind! (1) And that result was publicized in all the media, in the popular press and anywhere else we all find information about health. It strongly resembles Hans Christian Andersen´s story about one feather that became seven hens by the story being repeated a few times.

It is detrimental to all us ordinary migraineurs when a small set of data that is in disagreement with larger datasets, is blown up to unbelievable proportions in the media to represent the eternal truth. Lots of migraine patients around the world now ´know´ that they get their migraines from ´something to do with the weather´, and they cannot really do anything about it. In this case it is obvious to the critical reader that the story was a con, but even then the story now has a firm grip in many patient´s memory. And maybe other planted stories are not quite so transparent.

We put our lives into the hands of the researchers. And get hot air in return.

(1) L. J. Cooke, M. S. Rose and W. J. Becker, 2000. Chinook winds and migraine headache. Neurology 54, 302-7.

(2) J. Piorecky, W. J. Becker and M. S. Rose, 1997. Effect of Chinook winds on the probability of migraine headache occurrence. Headache 37, 153-8.

(3) P. Larmande, B. Hubert, A. Sorabella, E. Montigny, C. Belin and D. Gourdon, 1996. [Influence of changes in climate and the calendar on the onset of a migraine crisis]. [Article in French] Rev Neurol (Paris) 152, 38-43.

(4) M. S. Rose, M. J. Verhoef and S. Ramcharan, 1995. The relationship between chinook conditions and women´s illness-related behaviours. Int J Biometeorol 38, 156-60.

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Science sponsored by industry

It´s no different among researchers who work with migraine and its causes. Some scientists claim to have proven that chocolate can trigger migraine, at least in some predisposed people. Others say that chocolate does not trigger migraine.

D.A. Marcus, L. Scharff and L.M. Gourley (report in the scientific journal ´Cephalalgia´ in December 1997) compared the reactions of 63 women with chronic daily headache to chocolate and carob (a sweet that can be prepared so that it tastes like chocolate). The women had either migraine (half of the group), tension headache (one third of the group) or a combination of tension headache and migraine (the rest). The people tested were asked to eat a special diet that should give as few migraine attacks as possible for two weeks. After that they were given ´chocolate´ that was either real or the fake made from carob that was supposed not to give migraine.

The results showed that around one quarter of the people tested had headache after eating chocolate (the real version) while slightly more had headache after eating the carob version (the fake chocolate). The scientists then concluded that chocolate does not trigger migraine in a mixed group of headache patients, and that they disagree with the conclusion drawn from earlier experiments.

However, if we look closer at the experiment we find some problems. Patients with chronic daily headache have (that is the definition of chronic daily headache) headache every other day or more. By choosing exactly these people test, the scientists have, in the early design of the study, given preference to people who are bound to produce the weakest and least conclusive results, because they have headache very often anyway. No distinctions were made between ´chocolate headache´ and all the other days with headache.

For the individual migraineur, who may or may not get migraine from chocolate, it is much more interesting if a test demonstrates that even just one migraineur consistently reacts to chocolate. It is not interesting to know that some do not react.

Maybe the most interesting information in the report is its last sentence, where the authors thank the people who funded the project The American Cocoa Research Institute - who are, of course, owned by the manufacturers of chocolate.

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Labeling of food and patient organizations

We regret that the 1997 health minister did not think that a contents declaration for patient organizations was important enough to be part of her legislative agenda. We have laws that state we must have a label with detailed information about the contents of every processed food item in our supermarkets, on electrical goods and feed for animals, as well as - of course - medicine. It is regarded as important that we know what we put into our mouths or into the plug on the wall.

Patients are consumers of information - they put it into their heads from articles in the member´s journal, from folders and pamphlets handed out at hospitals or at the GP´s. Those patient organizations that accept to produce and hand out information printed in collaboration with the companies that manufacture and sell their medicine are, in effect, working as lobby organizations (or maybe sales representatives) for the medical companies, and should be seen as such. We do not say that all information sponsored by the medical companies is bad. Many folders and information booklets from the companies contain a lot of important information. But the selection of information is bound to reflect the business of the sponsor, the sale of medicine. The independent patient organizations can speak freely, and may publish information that is not necessarily wanted by the industry. This may be about how to avoid getting sick in the first place, or how to reduce the amount of medicine you consume.

When it comes to how much information may be trusted, its origin is important. Maybe the free patient organizations have limited funds and publish information in cheap covers, but they have no reason to work as undercover sales representatives for the medicine industry.

It is unsatisfactory and difficult to understand that the health minister does not think patient organizations should be required to carry a ´contents label´, which would indicate whether they regurgitate the medical industry´s sales material, or whether they issue information which is - as far as possible - unbiased by the wish to sell. Obviously it is more important to label what we absorb through our mouths than what we absorb through our ears and eyes. But nonetheless we need to discriminate between advertisements and unbiased information.

We do not want censorship in any way. We want freedom of speech for everyone, the industry included. But we do want to be able to see the difference between so-called ´information´ which is in reality sales promotion, and unbiased health information. Just like we appreciate that adverts are labeled as such, so that they don´t masquerade as editorial text.

Since the health minister does not think it is part of her responsibility to demand clear information about patient organizations´ funding, the organizations themselves need take care of the problem, by calling themselves ´consumer interest organizations´ rather than patient organizations, if they feel that they are under the influence of the industry.

But it is still hard to understand that the trustworthiness of information sources for patients is less important than the contents of a jar of jam.

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Public resources for research

We have outstanding Danish migraine researchers who use large amounts of time to research for industry. They do excellent work and are cited by both Danish and foreign scientists. But they use far too much of their valuable time on studies that don´t lead to anything new. We need research that asks questions that may not have an instant answer but in the longer term will answer questions that the medical industry doesn´t want to sponsor: