Alopecia Areata and the Battle Against Bad Information

In 2020, you don’t have to look far to find bad health advice and uninformed medical opinions. But for people with Alopecia Areata, Dr Google and Professor Facebook are nothing new.

If you’ve had alopecia for a while, you know who I mean. The snake oil salesmen, the old wives with their tales, the dangerous diet influencers.

“Have you tried rubbing an onion on your head?”
“Guaranteed results in just two weeks!”
“My cousin tried this and it worked for them so it will definitely cure you!”

I’ve been living with AA for over 20 years, and can confirm that these voices have always been around. People have been selling quick-fix schemes and promoting cures without evidence for as long as people have been losing hair. However, in the era of fake news and alt-facts, I worry they’re getting better hiding their biases and passing as real science.

To an informed reader, bold claims of instant cures are fairly obvious spin and hot air. When you see the onion cures and anecdotal evidence in the above statements, I’m sure you feel the same scepticism as I do.

But what about these?

“Studies have shown…”
“Certified and accredited!”
“Do your own research.”

These all sound a lot more reasonable, right? Studies are good science. Accreditation is usually a good sign of reliable information. And who could argue against doing your own research to get more informed.

Yet these turns of phrase have all been weaponized at one time or another in the war against science.

Consider this: how many studies? Where they high quality, and using representative samples? Were the results statistically significant with an actually meaningful effect size? Were the studies peer-reviewed and published in a journal of good standing?

And about this certification – certified by who? Accredited by what? Is it a formal registration process? Can just anyone become certified if they pay for it, or is there a review process?

“Do your own research” sounds like a reasonable suggestion to find information and make your own view. Yet, somehow, it’s become the catch cry of conspiracy theorists and anti-science propaganda.

Many actual scientists worry that members of the public “doing their own research” can be dangerous, even deadly.
Scientists usually have access to a wealth of data and information that members of the public simply don’t. Misunderstanding or misinterpreting data, or making assumptions due to a lack of experience, can cause “doing your own research” to result in seriously incorrect conclusions. Not to mention that research itself can be misleading – even to those who do know what to look for.

 

So how do we, as members of the public and people with Alopecia Areata, find quality information? How do we know who and what to trust?

The following questions can help you determine if you think a piece of information is credible to you.

• Who is saying it?

Are they trained in the area they’re talking about? Are they a representative of a peak body or organisation of good reputation?

• Why are they saying it?

Does the person saying this benefit financially or personally from this information or from others believing this information?

• Where are they getting their information from?

Do they provide sources for their information? Is the source based on strong evidence? Does the source actually say what they claim it does?

• Do other people who I feel are credible agree with them?

Do other experts say the same or similar things? Is there a consensus from a peak body/bodies or a professional organisation?

 

This can all be a lot to think about all at once. A simpler rule of thumb is a phrase that is one of the foundations of the scientific method: Extraordinary claims require extraordinary evidence.

And for me, saying I need to wrap my head in oniony plastic wrap for several weeks is quite an extraordinary claim.

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This article is an opinion piece written by AAAF Secretary Georgia, and may not reflect the opinions and views of AAAF as a whole or other representatives of AAAF. It is a personal statement from the writer only.