Author’s Note (6/10/14): Huh! Looks like we’re at 9k FB likes. That’s 8,996 more than I expected! So, that’s a win. Apparently a lot of people think the system is broken. Ok. Now, what do we do about it it? I’ve added a new bit at the end.
::::::::::: RANT ALERT :::::::::::
Remember how six months ago, everybody had a gluten allergy? Remember how, as of last week, nobody has a gluten allergy? Remember, she said as a casual aside, my last post about social systems and pendulums?
I walked into a meeting yesterday where four people who know nothing about medicine, were confirming to one another that gluten allergies have finally been proven a hoax. My boss, a super-intelligent biologist, handed me the links cited below as proof that there are no gluten allergies in anyone ever.
I have issues. For starters:
One: Both links (same article), actually say in the abstract they found some evidence of gluten sensitivity. Just, not as much as people have been saying there is.
“Recent randomized controlled re-challenge trials have suggested that gluten may worsen gastrointestinal symptoms, but failed to confirm patients with self-perceived NCGS have specific gluten sensitivity.” Article (Absract 1)
“Gluten-specific effects were observed in only 8% of participants” Article (Abstract 2)
Two: the gluten conversation resembles all broken conversations between the alternative medical community, the conventional medical community (known here as The ‘“Damn That Hippie Medicine” People’), and humans. It is a social system with a broken feedback loop.
To say that gluten allergies don’t exist and/or cause anyone serious symptoms, is not only not factual, but it’s not even indicated. The new “DOES NOT EXIST” gluten mantra is hyperbole, driven by a knee-jerk reaction to the preceding hyperbole, which is “EVERYONE HAS IT.”
It is time to shut up about gluten
At this point, pretty much everyone talking about gluten, is making things worse. Here is what is happening.
I call particular attention to the little dude in the middle left panel, who actually does have a problem with gluten. Most people don’t. That little stick dude, does. The hype helped him figure that out, which is great! But because it was hype, it got tons of people on board who in fact did not have the problem, and when they realized that, it was mad embarrassing. Because who wants to look like a dupe, right? So they deal with it by shaming the crap out of the one dude who has finally figured out that gluten is what has been making him sick. Now he can’t have gluten, OR respect. Awesome.
That is what is happening with gluten. It is also what ALWAYS happens, with EVERYTHING. I have been watching this medical hoedown up close for 20 odd years (also, 20-odd years), and I have been rendered incapable of writing about it without invoking THE CAPS LOCK OF JUSTICE. SO HERE IT IS.
A Letter to All Parties:
In the following open letter to all people who use medicine everywhere, I will attempt to drain the abscess of communication between alternative and conventional medical communities. I do so not merely about gluten, but also every other medical medical fad in the last, and next, ten years (Let’s play Med Libs: St. John’s Wort, heavy metals poisoning, Atkins, whatever.)
[Internet feedback: A: Several wonderful medical practitioners on both sides have reminded me that we are seeing advances in these two communities sharing ideas and techniques. This is true and awesome.
B: But there are not nearly enough of them. I’ve been watching this (tbf, very ranty) article bring a LOT of the pent up tension between the groups to the surface. This tension is exactly what we need to defuse if we’re going to turn A into most of reality.]
Dear “Damn That Hippie Medicine” Doctors:
Hi there. Thanks for occasionally saving my life with your crazy robot chemistry ninja magic. Also, please stop debunking everything you don’t understand.
We are not talking about whether [insert medical phenomenon here] exists for all people, or no people. Edge cases exist. I call to the witness stand: math.
By definition, 3 out of every thousand people are an edge case in some damn thing, and there are a lot of “damn things”, so that makes most of us an edge case in something.* I, personally, have had at least four edge-case medical conditions, that my doctor had never seen before!** (I’m fine now, thanks for asking.) In fact I’d say that 25% of my friends have at least one super-rare condition!
True Thing: Each rare condition is rare,
but having a rare condition, is not.
You may have noticed that there are a bunch of people floating around who seem to be dying for no reason. There actually is a reason, which is that they are an edge case that science hasn’t figured out. You, “Damn That Hippie Medicine” Doctors, are mostly focusing on the causality chain of the 80% of average things, instead of the 20% of complicated things, and therefore, you have not figured out some complicated things! Which is fine, but then at least have the common decency to shut up about it!
I get that your job demands that you act like infallible gods. It’s a broken system putting you in a tough position and I’m sure it sucks. But just don’t forget it’s an act. Don’t believe your own damn marketing. When you do, it can kill people.
* Defined as 3 standard deviations from the mean. I use another definition in the next paragraph. Shrug.
** Two of which are still not recognized by the regular medical community as real things. But guess what, “Damn That Hippie Medicine” Doctors! Remember how I used to be dying? Well now I’m doing crossfit. </me nods encouragingly at you.> There are a bunch of me. You should be taking notes.
Dear Alternative Medicine Doctors:
OH. MY GOD. I love you people, and you saved my life. But WHEN YOU DISCOVER A NEW IMPORTANT CAUSALITY VECTOR. WOULD YOU PLEASE. STOP TELLING. EVERYONE. THAT THEY HAVE IT.
News about important edge case solutions, is not currently being targeted to people who might have it. It is currently broadcast everywhere, all at once, in an information dissemination pattern similar to that used by hormones (which flood the whole body until the right organ hears them), radio (which does that same thing to the air), or TV advertising (which does it to your brain). This is the method society is currently using to distribute this information to the 3 in a thousand people for whom it actually makes a difference. This is a terrible method of communication and wastes everyone’s energy and time.* It is also and massively discrediting.
* mutter mutter creates oscillation in systems mutter mutter
To The “Damn That Hippie Medicine” People:
Guess what? When the alternative medicine IS paired appropriately with your actual illness, it actually works! For example, herbs that lower blood sugar, work! So it would be awesome, if you didn’t, for example, act with reprehensible irresponsibly and take 10x the dosage because you think it doesn’t do anything, and then die, and then rise from the grave in the form of a grossly-misspelled forum rant, crucifying the whole of alternative medicine! That shit is on you.
To The Alternative Medicine People:
I once went to a naturopathic store to buy, on the recommendation of a real doctor, some raw adrenal gland extract. I asked the woman behind the counter, how much should I take? She literally said the following:
“I mean, consult your intuition. Your body knows.”
Sooo…. by the way? THAT SHIT CAN KILL YOU.*
Alternative Medicine People, do not say “trust your intuition,” or your angels, or your energies! Ever! Use data! And science! Please! And please publicly discredit the ones in your midst who do not! Because of many facts, like the following:
One: People’s instincts say lots of unreliable and conflicting things, and therefore, people following said intuitions will do ridiculous things until they kill themselves, and then they will blame you.
And two: Alternative medicine is not a cosmology. Quit slipping spiritual riders into the bill of edge-case medicine. You wanna hand out cosmic leaflets, do it on your own time.
That said, I have had some great alterna-docs tell me: “The tests don’t prove X, but everyone like you who I put on thing Y, gets better. ::Shrug:: Want to try it?” That is great. You are acknowledging that we don’t yet know, or have the ability to collect data on, all the things in the world that are important. Which statement is patently, obviously true. So, great! Now keep records, and look for objective criteria to validate your hypotheses. With science ‘n shit.
To The “Damn That Hippie Medicine” Doctors:*
Will you PLEASE, FOR THE LOVE OF GOD, stop shaming people who are out there solving their own edge case medical problems, on their own steam, using actual data? Christ almighty, do you realize what you sound like? You might as well spit on us. Yes, I understand there are a lot of ridiculous Alternative-Medicine Patient hacks currently knitting natural fiber dreadlock tams in your waiting room.
Seated next to them, if I may point out, are the “Damn That Hippie Medicine” People who would rather have you give them four bottles of medication than choose to eat fewer than four Buffalo Ranch McChicken sandwiches a day, and who then whine at you about it.
The differentiator you are searching for isn’t “allopathic medicine people” VS “alternative medicine people.” It is “people who don’t give a fuck,” VS “people who do.” So when you talk to a smart person, treat them like a smart person.
* And also, everyone!
To The Marketing People who Capitalize on Health Fads:
You guys are dicks.
In closing flourish, I hereby revoke the name “Alternative Medicine.” You are not an alternative. You are complementary. You are now called Edge-Case-Medicine, working arm-in-arm with Standard-Case-Medicine. And as long as you work from data, create data, and do science, you are officially valid.
The moral to our story, is that edge cases exist. Some people do have gluten allergies. You are probably not one of them. But you might be. To find out, try science.
</me puts away the CAPS-LOCK OF JUSTICE>
This topic makes people (like me) super mad. I mean, why shouldn’t it? It is literally a life and death issue for some of us. Of course we’re mad. But if we want it to change, we need to do more than just tell each other how mad we are. Here’s what I, personally, want to see happen.
Discussion about this topic, between people who don’t already agree.
By “discussion,” I mean “good old-fashioned meeting-of-the-minds”, as distinct from, as a random example, “the rabid, screaming invective of torch-bearing mobs.” Shouting at the other guy is not useful at all. Shouting’s what got us into this in the first place.
We’re bored with this blood feud. We want the best of both worlds. To get that, we need both worlds talking to each other. Meaning:
People respectfully telling the medical community what they want.
Let’s start by openly asking our doctors to do things differently. I don’t know if it’ll help, but let’s try it. If you do, I recommend assuming they are good people who genuinely want to help you.
The medical community responding with what they need in order to make it possible.
There are forces acting on you that we don’t know about. Constraints and incentives. What makes it hard to do what we’re asking for, and how can we fix it?
P.S. The title of this article is hyperbole. Some things are frauds.
P.P.S. I release articles first on fb, where I follow any feedback I can see. It makes me better informed, and I appreciate it, even when it is full of fire, brimstone and flecks of monitor spittle. But the weirdest responses I’ve seen to this one, is conventional medicine people, furious that I’m validating all of alternative medicine; and, in the same thread, alternative medicine people, furious that I’m trying to debunk their real and serious medical problems. That’s just the point, guys: I’m saying the opposite.
Each community here has a big beef with the other. Each one is partly justified. But, not entirely. And the turf war between them is driving the tension through the roof. Which makes us defensive. It makes us choose sides. And react explosively. Instead of listening.
Here’s the comment policy on this blog. Short version: don’t be a dick to people! Listen, add value, no shouting. For this article, I’m most inclined towards comments about why you think the system is broken, and what we might do about it.
Hi! I’m at work surfing around your blog from my new iphone!
Just wanted to say I love reading through your blog and look forward to all your posts!
Carry on the outstanding work!
😀 Thank you. What a delightful comment to get on an otherwise dull wednesday. I will do as you suggest. 🙂
Fantastic stuff. Brilliant really. You just put some very clear cutting words on a pulse that is indeed brewing very strange animosity between all parties…the marketers are indeed the pot-stirrers though. Thank you for this. A breath of intelligent, sane, fresh air.
Flattery will get you everywhere. Thank you back.
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🙂 thank you!
Thank you for replacing the image of Caps Lock. The background of the previous one was really unsuited for any humorous purpose.
Yeah, again, my apologies to everybody, and my thanks to the folks who pointed it out to me.
I have the solution. It is about edge mobility. We were programmed by biology to psychologically look to the edge from the center, whether that is with a tribe, alone, city, planet . We look for unique from the over-grazed, every time in order to survive. These people are the outliers, not the like us silent majoritysheep like the bell-curve suggests us 80% really are. Thats okay, even sheep get their turn on the leading edge as the pack recycles in on each other like a cyclonic herring ball/feeding frenzy. We safe and smart sheep just wait and watch for the outlier with consistent longevity. Just let the radicals trailblaze, please share your notes, but it isn’t necessary, for it is a numbers over time game.
No seriously, want to chat offline? I have your email address. Another very clever systems thinker has reached out to me and I want to see what happens if we all talk. My turnaround right now is measured in weeks, FYI.
This is so refreshing. I was getting less and less tense section by section as for once (hyperbole…for rarely really) someone was taking a balanced look at something. Yay!
hahahaha…. that’s a very evocative description. I know exactly what you mean. 😀 thank you.
Thank you for this. After 6 years of trying to figure it out and now 8 years without Gluten I know I have a sensitivity and everyone is telling me now, all of a sudden I’m wrong? Even though I feel good now and if I drink a beer or eat a bagel I feel horrible? Hmmm thanks for your input, I will be shoving this in the faces of the haters!
I suggest shoving it nicely. You might get more traction than you expect to. 🙂 Good luck.