Lundbeck Foundation researchers are using public education in an attempt to spread the real facts about migraine. This battle poses a number of challenges.
Maude was the wife of bank manager Hans Christian Varnæs in the iconic Danish historical drama Matador, and poor Maude often had a rather tormented existence. For many years, she took to her bed whenever her life was at its lowest ebb. There have been many theories about the cause of Maude’s torment. Could it be unrequited love? One explanation, in particular, seems to have gained purchase: Maude’s recurrent malaise must be due to migraine.
As a result, Maude has become the stereotypical migraine patient in the minds of many Danes. However, according to Jakob Møller Hansen, the reality is not that simple:
‘First of all, Maude doesn’t have typical symptoms of migraine. These can be so painful that sufferers find it necessary to cut out all light and sound by shutting themselves away in a completely dark room. Secondly, migraine doesn’t only affect pale, thin, middle-aged women like Maude. Migraines, which belong to the headache category, affect a broad spectrum of the population – people of all types and ages. At a global level, one in ten people suffer occasional migraine attacks, and the WHO has provided evidence that migraine is the most common cause of ill health in 18–50-year-olds – so, people in the productive period of their lives.’
Jakob Møller Hansen is a specialist in neurology at the Danish Headache Centre at Rigshospitalet, Copenhagen University Hospital, and head of the Danish Headache Research Centre – all in all, a headache man to the core. In recent months, he and colleagues from the Danish Headache Centre and universities in the USA and Georgia have published three scientific articles on so-called popular representations of migraine patients and the many migraine therapies of variable quality available on the internet.
And it really is a mixed bag, as the scientific articles published in Cephalalgia and Headache show. The two journals are issued by the International Headache Society and the American Headache Society respectively. The Lundbeck Foundation contributed to funding of the research described in the articles.
The image of Maude in the minds of the Danish public as the stereotypical migraine patient has an international equivalent. Jakob Møller Hansen and his colleagues realised this when they were analysing the 300 drawings and stock photos of ‘migraine patients’ they found in two internet-based image databases: Shutterstock and Google Images.
Both printed and electronic media use images from these databases if they need a picture of an anonymous ‘migraine patient’. As Jakob Møller Hansen explains, it’s a well-known fact that these types of photograph usually show models who do not actually suffer from the disease in question, whether this be alcohol addiction, migraine or something else altogether:
‘The problem here was that almost all of the images – 82% – depicted adult women. Women predominate in the statistics for migraine – it’s estimated that three quarters of patients are women – but 82% is far too high. Furthermore, 64% of the models were white and Caucasian. Only 11% were black, 10% Asian and 3% Latin-American in appearance.’
On top of the many cases of incorrect ‘styling’ – where, for instance, models are seen pressing a palm to each temple to indicate intense pain, both in the drawings and in the photographs – this paints a distorted picture of the real ravages of migraine. Because, as Jakob Møller Hansen says:
‘The disease affects children, adolescents, the middle-aged and the elderly alike. Nor does it differentiate between skin colour. And when a migraine attack occurs, it will usually ‘only’ affect one side of the head or the shoulder and neck region.’
The general understanding of what a migraine patient can do to keep the disease in check is also impeded by information that is by no means always accurate. According to Jakob Møller Hansen, in some cases, it can be downright misleading:
‘In one of our recent studies, we looked into the information available on migraine on YouTube. We watched 351 videos, and 90% of them were made by people with no medical background. And when we conducted a large-scale text search on Google, we unearthed all kinds of websites – a lot of them clearly very commercial – recommending everything from transcranial electric stimulation to essential oils, marijuana-based products and Botox or beta blocker injections. It’s a jungle for migraine patients, yet there are still lots of sufferers who choose to treat themselves using solutions they find on the internet – unfortunately, often before they’ve visited a doctor specialising in headaches.’
In Jakob Møller Hansen’s opinion, this huge variety of ‘cures’ available on the internet should encourage evidence-based headache research to increase awareness of the extremely effective and well-documented therapies that are out there today:
‘A bit of leg work is required to educate the public, because with the new therapies now on offer we can actually help more migraine patients than we could only a few years ago. This is one of the messages we hope to get across in the information material we’ve prepared at the Danish Headache Research Centre.’