Migraine and Headache in the Media: An Interview with Thien Phu Do

By Freda Kreier | April 8, 2024 | Posted in

“Let’s take YouTube. The 100 most viewed videos on migraine discussed non-pharmacological treatment options. But what was concerning was that most of these suggestions weren’t evidence based, and some were directly harmful to patients. And that’s where the issue of stigmatization comes in. If patients are stigmatized, they may not go to see a physician. They may not see their migraine as something serious that should be treated as a medical disorder. What they do instead is go online, search for information, and try to treat themselves. The problem is that those options may be directly harmful or just not helpful. Then their disorder gets worse until at some point, hopefully, they go see a medical doctor.” 

Thien Phu Do

Thien Phu Do, MD, is enrolled in the Graduate Program in Neuroscience at the University of Copenhagen, Denmark. He is doing research at the Department of Neurology, Danish Headache Center, Copenhagen University Hospital – Rigshospitalet, where he studies the role of media in shaping public perception of migraine, among many other research interests.

Do’s latest work revealed that the word “headache” is often used in news media metaphorically, much more so than “migraine” is, which he and his colleagues says trivializes headache and stigmatizes people living with headache disorders.

Do recently spoke via Zoom with Freda Kreier, a freelance science journalist, to discuss his latest paper and related research, and why so many patients are turning to the Internet for answers. The interview has been edited for clarity and length.

In addition to being a researcher, you are also a physician. How did you get interested in the information about migraine and headache available on the Internet?

It came from real-life experiences with patients. I’ve been working with headache patients for half a decade or so, and a common occurrence is that patients would ask me about something they read online. Most of the treatments they read about, in my experience, weren’t evidence based. So I’d usually say, “If this works for you, I suggest you keep doing it. But it’s not something I can or cannot recommend because I don’t know if it works.”

That’s pretty much what started this entire thing. I wanted to know: What is out there? And what kind of treatments can I expect patients to ask me about?

Thien Phu Do

Thien Phu Do

Your most recent study found that English-language articles in major publications from 1998 to 2017 often used the term “headache” metaphorically – 11 times more so than “migraine.” What led you to undertake this research?

A common anecdote I get from patients is that when they tell friends, family, or peers that they have a migraine or a headache, most people will suggest: “Oh, you should just have some water or a nap.” This trivializes the experience of having a migraine attack. So we wanted to dive into whether this trivialization is also reflected at a higher level in our language, in this case, the language appearing in news articles from major publications.

We looked through a random sample of 1,000 sentences with the word “headache.” We found that the word is usually used in a negative manner, which is not surprising, but the news articles we went through also used headache metaphorically, in a way that suggests it is merely a minor annoyance.

If headache is used in our language to convey that it is only a minor annoyance, this might also reflect how we perceive people with headache disorders. We know from other studies that stigmatizing words alienate patients and influence how medical professionals perceive their patients and how they treat them.

You’ve also looked at what information on migraine is available on social media and platforms like YouTube. Can you tell me about that?

The studies in general show that pharmacological approaches are not highly ranked; most of the information that was popular – the highest ranked on search engines – involved diet and sleep.

Let’s take YouTube. The 100 most-viewed videos on migraine discussed non-pharmacological treatment options. But what was concerning was that most of these suggestions weren’t evidence based, and some were directly harmful to patients. And that’s where the issue of stigmatization comes in. If patients are stigmatized, they may not go to see a physician. They may not see their migraine as something serious that should be treated as a medical disorder. What they do instead is go online, search for information, and try to treat themselves. The problem is that those options may be directly harmful or just not helpful. Then their disorder gets worse until at some point, hopefully, they go see a medical doctor.

Even in Denmark, where we have free healthcare, we found that many individuals with headache disorders never see a doctor. Even those who are most disabled and have at least one headache day per week – one-quarter of those individuals have never seen a doctor for their condition.

That was quite surprising. Even in a country where we have all these protections, we still have an issue with people seeking medical care for their headache disorders. I would assume that it has something to do with the social perception of headache disorders by people around you, but also by individuals themselves living with these disorders.

What was it like to watch all those YouTube videos on migraine?

It was concerning. Some of the videos were helpful enough, but it was really just a minority that provided information that was of relevance and evidence based. A lot of information was commercially driven, in one way or another.

Why are so many people turning to the Internet for answers about their migraine and headache disorders?

The social aspect is one of the major drivers. If you take the example of a fracture, most people will not hesitate to see a healthcare professional. But for some reason, we don’t see this with headache disorders. So there’s some kind of a social barrier that drives people to the Internet rather than seeking care.

Another aspect is that there may be an element of inadequacy of care. We know from several studies that headache care in much of the world is suboptimal. If a patient comes out of a consultation not having received the treatment that they feel is adequate for their disorder, then they start to seek out other alternatives.

Then there are financial issues. I’m lucky to work in a country where healthcare is relatively accessible. But in countries where you must pay yourself or argue with an employer to go to the doctor, we expect that may also be a major barrier to getting adequate care and push people to find other sources of information. And again, if a headache is referred to as a minor annoyance rather than as a medical disorder, then that may also be a major social barrier that could drive people to seek information available online.

What can be done to address misinformation on migraine and headache disorders?

It’s quite a difficult task. There’s no doubt that there was an infodemic during the COVID-19 pandemic. And I do not believe that we found a solution to handle that; we tried, but there was still a lot of misinformation being spread rapidly online.

What I hope we can do is make good, evidence-based information more readily available online. I know a lot of different professional societies, such as the American Headache Society and the European Headache Federation, have worked quite a bit on this. However, a lot of information on social media from professional societies is targeted at clinicians or researchers. We have to make this information more accessible to those who need it: people living with these disorders.

What would you like researchers and clinicians to keep in mind about migraine, headache, and media?

I hope that, in general, there will be a shift towards understanding that migraine and headache disorders are medical disorders. It’s not too long ago that migraine wasn’t seen as a biological disorder in Denmark. We’ve made some major leaps since then, but there still needs to be work done internationally. For instance, in some parts of India, migraine is still not considered a neurobiological disorder. This is a huge problem because people living with migraine can’t get reimbursed for treatments through health insurance.

When it comes to clinicians, information from the Internet is going to be a normal part of clinical consultations, regardless of the disorder, simply because there is so much information available. Clinicians should embrace this because it can make their work easier. For instance, by the time they get to us, patients at the Danish Headache Center already have a good idea of what treatment options are out there. So we may as well engage in dialogue about what may or may not work for them.

Freda Kreier is a freelance science journalist based out of Washington, DC.

Image credit: 123RF Stock Photo.

Additional Reading

Metaphorical use of “headache” and “migraine” in media: A longitudinal study of 1.3 million articles in major publications.
Zhang P, Ventrapragada A, Shapiro RE, Do TP.
Headache. 2024 Jan 18. Online ahead of print.

The increasing role of electronic media in headache.
Do TP, Andreou AP, de Oliveira AB, Shapiro RE, Lampl C, Amin FM.
BMC Neurol. 2023 May 17;23(1):194.

Cluster headache – The worst possible pain on YouTube.
Chaudhry BA, Do TP, Ashina H, Ashina M, Amin FM.
Headache. 2022 Oct;62(9):1222-1226.

Internet Search Interest for Over-the-Counter Analgesics During the COVID-19 Pandemic.
Do TP, Do HQ.
Pain Med. 2021 Oct 8;22(10):2407-2418.

Googling migraine: A study of Google as an information resource of migraine management.
Bojazar R, Do TP, Hansen JM, Dodick DW, Ashina M.
Cephalalgia. 2020 Dec;40(14):1633-1644.

The depiction of migraine visual aura on the internet.
Viana M, Hougaard A, Do TP.
Cephalalgia. 2020 Sep;40(10):1113-1118.

The Stereotypical Image of a Person With Migraine According to Mass Media.
Gvantseladze K, Do TP, Hansen JM, Shapiro RE, Ashina M.
Headache. 2020 Jul;60(7):1465-1471.

The migraine landscape on YouTube: A review of YouTube as a source of information on migraine.
Saffi H, Do TP, Hansen JM, Dodick DW, Ashina M.
Cephalalgia. 2020 Oct;40(12):1363-1369.

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