What we don’t know

Being let down by portions of medical science does not give us the right to supplant medical fact with our own opinions.

In 2011, during an appearance on Real Time with Bill Maher, Neil deGrasse Tyson said, “The good thing about science is that it’s true whether or not you believe in it.” It’s the kind of droll remark we expect from one of the most popular scientists in the world. But more than simply being a witty comeback to evolution-deniers, it was a comment that held a lot of truth.

Ignoring science based on a few, albeit dangerous, examples of bad science is not only irresponsible, it’s dangerous.

I doubt there’s a chronic sufferer who hasn’t felt let down or betrayed by the medical establishment. Not only is science playing catch-up with us, it also allows doctors invested in their own misplaced ego and ignorance to neglect and abuse us. We have every right to feel jaded. But it’s also important we direct our anger in the right direction and don’t let belief get in the way of knowledge. It can be easy to bundle medical research in the same category as “big pharma” and the insurance companies that take advantage of our illnesses, but that would be unfair.

While there have been many issues with research into chronic illness — whether it be the fraudulent 2011 PACE trial or the recent, and deeply flawed, Harvard University study into the correlation between weather and pain — that is down to human error (to put it kindly) rather than the general integrity of science. It’s important that we can make the distinction between individual biases and sincere study. Fifty years ago, we put men on the moon, now’s not the time to regress to the Middle Ages and declare science corrupt and unreliable based on a few, albeit damaging, examples.

One need only look at online discussion groups to see how misinformation and personal belief runs wild in our community, spreading from person to person. As informed as we might have to be in order to tackle our doctors’ prejudice, we don’t know enough to force diagnoses of “leaky gut” and “gluten insensitivity” on others based on a few inquiring sentences posted on a message board. In doing so, we’re little better than the doctors who have labelled us crazy.

We don’t hold all the answers. No one does. As such, it’s important not to dismiss the importance or validity of medical research, falling back instead on our own assumptions and pseudo-science. The Pace Study alone proved that bad science is easy to spot. So why, if we disagree with a finding, do we denounce it despite abundant evidence to the contrary?

“Facts do not cease to exist because they are ignored.”
— Aldous Huxley

There’s no doubt many sufferers find comfort in therapies like homoeopathy, and that’s great. But it’s important to remember that “alternative therapies” have been studied extensively and beneficial elements have been assimilated into mainstream medicine. The problem comes when those who find relief start touting them as treatments to desperate peers. It can be tempting to turn to these alternative therapies, especially when conventional medicine has fallen short — heck, even I’ve tried homoeopathy and hypnotism for migraines and fatigue — but doing so and, in turn, making them into contagious treatments is representative of the trumping of belief over real science.

One such therapy is the idea that removing gluten from our diets will help relieve our symptoms. For those with coeliac disease, this is an obvious course of action. But there’s little evidence that going gluten-free has any effect on non-coeliacs.

Before I followed through with my 2018 resolution to leave various Facebook chronic illness discussion groups — groups that held no value for me and were overall toxic — I responded to a post asking for advice on the benefits of a gluten-free diet. My response was simple: “If you’re concerned about the effects of gluten on your symptoms, you should consult your doctor. However, studies have demonstrated that gluten does not incite negative effects in non-coeliac people, and that issues often arise from an expectation that gluten has a negative effect on us and even FODMAPS which are often present in foods that include gluten.” To support this, I cited two pages detailing the relevant study of the matter (1 2).

The information I provided was scientifically correct and verifiable. Yet, I was immediately assailed by those denouncing the science behind the absence of gluten sensitivity in non-coeliac patients, based not on dissenting research or findings, but their own ideas. I received a personal message stating, “Geoffrey, the things you are posting on Facebook are inappropriate, please take them down.” Perhaps the most worrying thing, in 2018 I wasn’t surprised that some people online find science to be inappropriate.

“It seems to be a ‘nocebo’ effect — the self-diagnosed gluten sensitive patients expected to feel worse on the study diets, so they did. They were also likely more attentive to their intestinal distress, since they had to monitor it for the study.
On top of that, these other potential dietary triggers — specifically the FODMAPS — could be causing what people have wrongly interpreted as gluten sensitivity. FODMAPS are frequently found in the same foods as gluten. That still doesn’t explain why people in the study negatively reacted to diets that were free of all dietary triggers.” — Jennifer Welsh on the findings of Peter Gibson.

In this case, personal experience and belief were preferred to scientific inquiry. While we often give our personal testimony precedence, it is usually in the absence of demonstrable science — for instance, when battling our doctors’ problematic opinions. But when we put more stock in ignorant testimony than peer-reviewed research, we’re only exacerbating our own problems.

Peter Gibson’s study into gluten sensitivity is one of the best pieces of science I’ve seen in my life. Having discovered a tentative link between gluten and reported coeliac symptoms in those without the disease and then recognising flaws in the study, he repeated the study in a more in-depth way and found that he was wrong. Not only this, but he then published a paper denouncing his previous findings. The article that reports it calls it “one of the best examples of science working” and that’s exactly what it is.

We have a responsibility to collaborate and stop the spread of misinformation, not only among the medical community, but in our own community. But we can’t do that if we keep giving precedence to personal opinion over meaningful research.

But if Andrew Wakefield’s fraudulent claim of a link between autism and the MMR vaccine shows us anything, it’s that people will ignore sources that dissent with their own views. Science isn’t a whim. Our knowledge is based on hundreds of thousands of peer-reviewed papers. Experts have devoted their lives to the study of their particular field. We know so much about how our world and universe works, and there is much we don’t know. But not knowing everything doesn’t mean that what we do know is wrong. Despite what people might tell you, the earth really is round and orbits the sun. Yet when we speak of science closer to home — i.e. science that affects out illnesses — our convictions become more important than critical study; once we settle into a story about our condition, we can become reluctant to challenge it.

Our suffering isn’t belief-based, no matter how many doctors want us to think so. In rejecting meaningful science based on the occasions we’ve been burned before, we’re only fulfilling the roles those doctors place upon us. We have a responsibility to ourselves and our community to make sure the information we share is valid — and also to police ignorance out of our community. One need only look at the anti-vaccination movement — how stupid and damaging it is — to see what can happen when people reject science. The last thing we need to be doing as we lose our herd immunity is rejecting the truths that contradict our opinions.

“You are not entitled to your opinion. You are entitled to your informed opinion. No one is entitled to be ignorant.”
— Harlan Ellison

Most people will believe that the days get shorter in the winter and longer in the summer. But when we observe that the first day of summer — the summer solstice — is the longest day of the year, the statement makes no sense. Yet, thanks to being often repeated, the belief remains. While things may enter the common vernacular if repeated enough, this doesn’t make them true. Unhappily, the vernacular of chronic illness is replete with false, unsupported, and fundamentally dangerous information that the desperate latch on to in the hope of turning things around.

It is all too simple to become bitter about the way medicine often treats us. But when that bitterness enables ignorance, it becomes dangerous. Researchers are working to find the answers to what causes the vast array of chronic illnesses that afflict us and by preferring distrust and misinformation, we can only hinder those efforts. While we should examine the resulting research and question it, when scientific inquiry produces answers contrary to our beliefs we have to demonstrate a willingness to accept that, rather than waste our energy perpetuating incorrect information.