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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

The Trouble With Science

Let’s talk about wonder cures. We see them every day on Facebook and in well-meaning email forwards from our relatives and every time we seek out advice from Dr. Google.

Science has a pretty bad reputation in this country. Sometimes medical care is a matter of blindly trusting a doctor’s advice. And we know all-too-well that sometimes, doctors make mistakes, or that some medicine is later discovered to be unsafe. When coping with something rare, like ichthyosis, a lot of times even the doctors are still just guessing.

Medicine used to be almost all guesswork mixed in with religion and mysticism. But things began to change at the end of the 19th century. Becoming a doctor meant more rigorous study and passing licensing tests, and folk healers began to drop away. And a lot of the guesswork was eliminated as the doctors and scientists collectively tested things and learned more about the way things worked. Even so, snake-oil salesmen in traveling medicine shows and mystery cure-alls from the druggist remained popular, especially for immigrants and working class families. And despite over a century of medical discoveries and real understanding of how physiology and genetics and germs play a role in our lives, the old-time fraudsters still abound.

Modern-day scammers no longer sell miracle snake oil. Today’s fraudsters sell miracle plant oil and magic water and magic obscure fruit juice. They tell you that lemons cure cancer and that vaccines are ways for the government to control us. They tell vulnerable families who are coping with a newborn affected by a lifelong chronic disorder, like you and me with our children with ichthyosis, that there’s a cure out there if only you follow me. Because they have the answer that Big Pharma is keeping from you so they can make money off of you.

Paranoid, much?

But really, these scammers are making money – a lot of it! – off of you, if you’re gullible enough to fall for it. Several years ago, there was a Magic Pill called Ichnotab. Guaranteed to cure ichthyosis and 40 other diseases. Only $150 for a jar of 30 pills. Money back guarantee, we promise! A few people got sucked in. It didn’t work. And that money back guarantee? Heh. Those guys were long gone. Nowadays, our inboxes are spammed with Magic Penis Pills and Magic Weight Loss Pills. Magic Water at one company is $75 a gallon. Magic Fruit Juice is $72 for a two-liter soda bottle. But hey, become a distributor and you get a discount! Even the latest fad, coconut oil, ranges in price from $7 to $115 a jar, depending on where you get it. Wow, that $115 jar must have something special in it!

A lot of the time, using this stuff is harmless to drink, eat, or rub on your skin. In a vacuum, it’s harmless to everything but your pocketbook. But we don’t live in a vacuum. We live in an era of social communication via Facebook and Twitter and Blogspot, and in this reality, one scam leads to the next and on to the next.  Slowly, this anti-science mentality has taken over much of the dialog.

We hear people questioning whether vaccines are safe, and epidemics of measles are on the rise since Andrew Wakefield (who has been stripped of his medical degree for fraud) proclaimed that the MMR vaccine was the cause of autism. It’s hard — especially on the Internet — to tell the difference between accurate information and someone trying to sell us something. It’s all too easy to be swayed by faulty logic or lured by easy solutions. Sure, that Nigerian prince really needs our help and will give us millions of dollars if only we give out our bank account numbers. Sure, that guy will pay double for the couch we’re selling on Craigslist, so long we don’t sell it to someone else first. And sure, the scammer’s Magic Water will cure our cancer painlessly.

So let’s talk about magic physiology. The following is a screen capture of a web site that talks about how the body works to maintain homeostasis, and why changing to an alkaline diet has no effect on your health.

water scam discussion


What do you see? I see blabbity-blabbity-blah-blah. If I take the time to read it, it says everything I know to be true about the biology of the body, and it’s accurate, and written by an MD with a bunch of links about how to recognize a scam, so it’s probably a reliable source, and no one is trying to sell me something. But imagine seeing this in your Facebook feed. Most people would scroll right past it. Wouldn’t you?


Now compare against this:

 blood ph scam pic


Now what do you see? Clear as day, right? Acids make you sick, bases make you healthy. And if you couldn’t figure it out from the words, they even provide helpful pictures of a healthy baby and a sick old lady. Duuuuude! So simple! You don’t even have to read the blabbity-blah underneath. Like and Share!! (No…please don’t!)

But guess what? The colorful picture is NONSENSE.

Science, by its very nature, is grey. Scientists don’t like giving clear-cut answers, when under this situation or that circumstance, you might get a different result. Everything is couched in probability and chances that they are right and “under these conditions” and lots and lots of details. Reading a science article is a pain if you don’t know what a p value of <.01 means.

So up above, in his wall-of-text, Dr. Mirkin goes to great pains to explain why Mr. Rainbow’s Magic Health Solution won’t ever work. And Science Based Medicine does an excellent job, as well, at pointing out the same thing. But only if you’re okay with wall o’ text and don’t need the pretty pictures.

And science is also not afraid to admit when it’s wrong. But that willingness to back off when new evidence is discovered sometimes comes across as a weakness. How many times have you seen someone say “evolution is JUST A THEORY”? Or how a disagreement between global-warming scientists about the rate of sea level rise has been manipulated by politicians into debate about whether global warming even exists?

So here’s my call-out:

To our readers: Evaluate what you read. Before you click and mindlessly share, please check out your hoax and scam sites. QuackWatch. Hoax-Slayer. Science-Based Medicine. Even good old Wikipedia is worth a few minutes of your time.

To our researchers and scientists: You know your stuff. But you’re LOSING a large portion of the public to the scammers because they are masters of the art of the sale. You’re losing to the politicians because they only speak in black and white. You need to do a better job at leaving the ivory tower and coping with the masses. Our next generation depends on it.

2 comments to The Trouble With Science

  • I actually reported the scam I received to our comsumer watchdog government department. It was good to see that they took my call seriously.

    It’s scary that people will take advantage of the vulnerable.

    Great post 🙂

  • Keith

    There’s a huge difference between your blood PH and your urine and saliva PH. While it is true that your blood PH has a very narrow margin that it operates in and if it falls out of that range you will become very ill and possibly die it isn’t true that you can’t change your urine and especially your saliva PH. For some reason they don’t mention saliva PH in this article. I personally went on a regimen of high alkaline foods, water only, no extreme acidic meats like pork and shell fish, very little lean red meats, no coffee, dairy, breads, sugars etc. The purpose of this “diet” or lifestyle was to reduce arthritic pain and achieve greater overall health through a higher PH allegedly achieving homeostasis where your body is better able to metabolize and heal itself. I started out every morning measuring the PH of my saliva before eating or brushing your teeth and measuring the PH of your second urine of the day. When I started these measurements were extremely low in the acidic range around 3 or 4 on the PH scale. After starting the high alkaline regimen my PH started going up slowly but surely. By the time it reached 7, which took 6 months, there was a huge noticeable change. My arthritis pain wasn’t even half as severe, I slept much better, had tons more energy, lost 20 pounds. It did everything it claimed to. Now you can make what ever claim you want, that it was the “diet”, that it was this or that. Doesn’t matter, it worked, I felt much better and my urine and saliva PH was measurably much different. Coincidence? That article says you can’t change your urine PH, FALSE. Doesn’t mention saliva PH, which can be changed. Is Big Pharma out to make money off of you?? Of course they are just like the snake oil salesmen are. Do the snake oil salesmen sell you potentially harmful products, yes, does Big Pharma, hell yes they do. What do they have in common, they’re all out to make money off of you. None of them do this out of the goodness of their heart, it’s all about money. There are plenty of snake oil salesmen out there whose products do nothing for you or are potentially harmful. There are plenty of “legitimate” Big Pharma produced products that do the same. Watch one of the hundreds of new prescription drug commercials on the TV these days and listen to the disclaimer after an FDA approved product is advertised, the side effects are horrendous and the list is huge. There isn’t much difference between them, the natural products, diets and snake oil except that they have government approval. My worst experiences and side effects have always been with “legitimate” doctor prescribed prescription drugs. Use your head, don’t just take anything, natural, prescribed or otherwise, always do your research even if it is something given to you by a doctor.

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