Two migraine “experts” debunked…

Sharing of information is a wonderful thing.  And after all, that’s why this website is here.

But that spreading of information always has its downfalls.  Of course, there’s the danger of spreading bad information.  Or incomplete information.  And no one is free from those kinds of dangers.

There’s also the danger of misunderstanding the information you get – misinterpreting, seeing it in the wrong way.

When it comes to the study of the human body, the dangers are many.

There are two types of "experts" I want to talk about briefly today.  First, there’s the person who sees the news about migraine, and sees holes in the research.

This person keeps seeing the fact that we don’t really understand how migraine treatments actually work.  We don’t really understand why some people get migraine, and others don’t.  This person starts to think that holes in the information signify that every scientific theory about migraine is completely worthless.

In other words, migraine is all in your head.  The whole migraine treatments thing is a racket.  You’re spending money on more and more things that only harm your body, when the real answer is… well, then they suggest whatever they think might be the answer – your state of mind, perhaps.

But there are problems with this migraine expert.  First, ironically enough, they themselves often lack solid evidence for their own solution.  But also, they fail to realize that holes in our understanding of migraine do not mean that we know nothing.  We’ve learnt a lot, especially over the past 20-30 years.  Just because we don’t have the big picture, doesn’t mean we don’t have any picture at all.

The other "expert" is someone who perhaps has migraine themselves.  They constantly hear about the great strides that are being taken in science – especially in genetics.  Now we understand how migraine is connected to your DNA.  Now we understand what happens biologically in your body during a migraine.  We understand what’s broken.

So then, why ain’t I fixed?

This so-called expert is on the other end of the spectrum.  They overestimate how much we know about migraine, and are constantly baffled by the fact that so many people aren’t cured.  If they have migraine, they ask why they haven’t been cured yet.  If they don’t have migraine, they assume that the migraineur simply needs to see a better doctor, or hear about this most recent discovery.

The study of genetics isn’t what it used to be.  Or maybe it never was what it used to be.  It’s been very easy to over-simplify genetics, just like we over-simplify life in general.

It seems like many people think of the DNA as a computer program – 0s and 1s – that are put in a sequence to give complete instructions on how to build a person.  If you find a gene related to migraine, for example, you simply change the programming and you’ve solved the problem.  We just need a human version 1.1, then maybe a version 1.2 to fix the bugs.

But then the research starts to confuse us.  What if a decision you made when you were 13 could shorten the life of your kids and grandkids?  What if a flea had more genes than a human?  What if two creatures with almost the same genetic information developed in drastically different ways?  More and more questions begin to arise that the computer program model, or building block model, just don’t seem to explain.

In his recent article Getting Over the Code Delusion, Steve Talbott addresses some of these issues, though he’s not specifically talking about migraine.

But he does use the example of the cystic fibrosis gene.  This was a marvellous discovery early on – and yet, more than 20 years later, the miraculous cure has not materialized.

Why?  Because it just isn’t as simple as a lot of people would like to believe.  If you read his article from beginning to end, you’ll learn not about a complex computer program, but a complex dance – moving parts on moving parts, changing in ways that we’re only starting to understand, interacting in ways we can’t yet even imagine.

He writes:

Achieving logical and mathematical certainty within a limited sphere can seem more rigorously scientific than giving attention to the metamorphoses of form and rhythms of movement so intimately associated with life. These latter require a more aesthetically informed approach, and they put us at greater risk of having to acknowledge the evident expressive and highly concerted organization of living processes. When you encounter the meaningful, directed, and well-shaped movements of a dance, it’s hard to ignore the active principle — some would say the agency or being — coordinating the movements.

It’s attractive for a scientist to limit herself to simple mathematic formulas, but in the end we’re talking about life.  Life that is complex and that interacts and changes and grows and develops.

So what do I want to say to our two experts?

To the first, let’s put it this way.  Our discoveries continue to confirm that migraine is a complex disease.  There are many ways to understand diseases – and because we’re talking about life here, it’s never going to be simple.

After all, if you cut your arm, it may seem like an obvious injury with an obvious cause and obvious solutions.  But do we really understand the impact that has on the body as a whole, and how exactly the healing process works?  No.  Just because it looks simple, doesn’t mean it is simple.

To the person waiting for a cure, let’s put it this way.

Don’t be discouraged.  Our research and discoveries are leading us to better treatments.  But this is life we’re talking about – it’s complex.  Don’t hold your breath waiting for that one silver bullet.  Instead, keep trying different treatments in different combinations, and make sure you have a doctor that isn’t going to give up on you.

The incredible discoveries and advances that we’ve made in the past 20 years can be deceptive.  They can make us think that we’re just around the corner from having it all figured out.  But nothing could be farther from the truth.

Do we have a better understanding of migraine than we did 20 year ago?  Of course.  Do we have better treatments?  I believe we do.

But are we about to discover the simple codes that can cure all our diseases?  No.

Should we give up?  No – we should keep studying, keep improving treatments, keep fighting.  There’s a whole lot of hope – perhaps more than ever before.  But we can’t be impatient, quick to judge, or in a hurry to over-simplify.

Talbott ends his article with a great illustration that might help us all better understand how genetics – and all of our discoveries of life – really work.

There is a frequently retold story about a little old lady who claims, after hearing a scientific lecture, that the world is a flat plate resting on the back of a giant tortoise.  When asked what the turtle is standing on, she invokes a second turtle.  And when the inevitable follow-up question comes, she replies, "You’re very clever, young man, but you can’t fool me.  It’s turtles all the way down."

As a metaphor for the scientific understanding of biology, the story is marvelously truthful.  In the study of organisms, "It’s life all the way down."

The best way we can fight migraine is to help patients – realizing that they’re not simple machines, but people – life.