All Known Health Frauds are, in Fact, Valid

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.

Gluten

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.

This superior CAPS LOCK OF JUSTICE was supplied by mystery man and new favorite person, Bret! Thank you!

This vastly superior CAPS LOCK OF JUSTICE was supplied by mystery man and new favorite person, Bret! Thank you, Bret!

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.

chance3

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.

* Probably.

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.

clip_image001

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!

And finally:

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?

 

Yours,

–K2

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.

Wanna comment?

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.

About K2

I'm a social systems / data geek. I'm fascinated by big, gnarly problems. Also, I hold the scandalous and controversial opinion that public discourse works better when both sides actually talk to each other.
This entry was posted in Uncategorized. Bookmark the permalink.

128 Responses to All Known Health Frauds are, in Fact, Valid

  1. Pingback: Are You Ready For Father’s Day? | Gluten Free Specialty Grocery Market

  2. Mijan says:

    I would have more respect for “naturopathic” doctors and other alternative medicine folks if they would also admit when something doesn’t work. When a technique or remedy has been tested over and over and over again, and shows no greater efficacy than a placebo, it’s time to admit it doesn’t work. Homeopathy and acupuncture are at the top of that list. There are tons of things that ARE effective. I’ve been using herbal remedies to supplement regular medicine for years, and I’ve found it effective. Herbals have been studied extensively, and while some have proven to be ineffective, many have measurable effects on human physiology and can be quite useful.

    For “alternative” medicine to gain any respect, it needs to acknowledge its limitations and accept the results of scientific testing.

  3. Bret says:

    So I don’t have too much time on my hands or anything… But here’s a more politically correct (and just altogether awesomer) CAPS LOCK OF JUSTICE pic I made, for an easy swap out. (if desired!)

    • kimsted says:

      I am STILL LAUGHING. Hahahahahahahahaha.

      Bret, you are my new favorite person ever. You win everything. I’m going to my desk now to swap out the picture. If you have a blog, or, like, a last name, give it to me and I’ll link to you.

      You’ve inspired me that the CAPS LOCK OF JUSTICE needs a different background every time.

      SERIOUSLY, man, thank you. So good.

  4. IHGreenman says:

    I consider both complementary and allopathic medicines to be extremely valuable tools in the tool chest for health. Doing without one or the other can be (literally) detrimental to one’s health.

    There are some really good courses of study in the US for naturopathic practitioners, for example Bastyr University in Seattle. The course of study there is as intense and rigorous as that for MDs. I’ve worked with people who have trained (and taught!) there, and by and large they qualify as “evidence based complementary medicine”.

    While I no longer live in Washington — I now live in sunny Florida — both my wife and I still consult with our naturopath in WA. She (our naturopath) keeps up on the research better than most of the MDs that I’ve known. She is perfectly happy to work with allopathically trained doctors, and one of the litmus tests that I use is to see how willing other doctors are to work with her. Some have passed, some have failed.

    As a concrete “for instance” of why I am so loyal to her, when I started working with her, I was extremely overweight, heading towards diabetes, was having trouble with malnourishment. I wasn’t eating in a way to cause any of those issues. After a bunch of work and a bunch of testing, we found out that I am celiac. I cut out gluten, lost 45 pounds in 6 weeks (which did not come back), and my fasting glucose dropped literally in half. These days, if I get even a tiny amount of gluten I am violently — and painfully — sick for days.

    This was before the Gluten Free fad; it was pretty hard giving up everything with gluten. I do admit that I like the Gluten Free fad, as it makes my life easier. 🙂

    • kimsted says:

      Wow, what a great anecdote! You’ve given a fantastic concrete example of how to create change. What would happen if we started saying, to both types of practitioners: we only want to work with doctors who are willing to talk to our doctors from the other side of the fence?? Not even agree, just talk, at all! We could all take a lesson from this.

      “She is perfectly happy to work with allopathically trained doctors, and one of the litmus tests that I use is to see how willing other doctors are to work with her. Some have passed, some have failed.”

  5. kimsted says:

    Hey I just want to say to you guys, I appreciate you. The hardest part of life is wrestling with contradiction and ambiguity. Living dynamically between two disciplines of medicine, is a grey area, and it takes a certain strength of character. You guys have it. Thanks.

  6. Chandra says:

    Reblogged this on Painting the Grey Area and commented:
    Can I get a HELL YEAH. This is pretty much the exact post I would have written about this topic, ifIeverhadtimetobloganymore and if someone else (a.k.a. blogger Kim at But Seriously, a smart and funny human whose words you should read) hadn’t got there first. READ IT. And then let’s all shut up about gluten.

  7. kimsted says:

    Hey I added a note below the CAPS LOCK OF JUSTICE, about the background image. Thanks for pointing it out. I will fix it when I get a chance.

  8. Kathy says:

    Yes, the people who capitalize on fads are dicks. But I am truly thankful for the fad. It has given me a LOT more options at the grocery store. I hope they keep making the stuff after the fad fades…as the one stick figure on the left, I really appreciate it. 😉

    • kimsted says:

      Yeah I totally hear you on that one. Also, it gave a lot of us practice at just eating fewer carbs, which, fad diet or no, is just plain better for you.

  9. [Moderator deleted]

    Moderator note: Sorry, Leisa! But having even one comment here about climate change seems to be too distracting for people. I prefer to have this thread focused on health stuff.

    And a note to the readers of the world: I was explicitly neutral about my opinion on this comment. Leisa was being nice, so I let her talk. That’s my whole deal. Letting people talk isn’t an implicit endorsement. It is, instead, the foundation of public discourse. So get used to it.

  10. Chandra says:

    Perfect. May I reblog this?

    • kimsted says:

      Oh thank you for asking! I’m new to this whole internetting business and don’t really know what reblogging is. But go for it. If you count page views to it that I don’t see, I’d love to trade stats later. It’s fun to watch.

      • Chandra says:

        Thanks! It just means that I’ll share a snippet of your post on my blog, with a link to the full article and credit to you. You should therefore see all page views (of those who want to read the whole thing) on your stats page.

        It’s kinda wild when a post goes unexpectedly viral, hey? Happened to me a while back too, and the attention took a bit of getting used to. Anyway, I love love love what I’ve read of your blog so far, and plan to spend some time soon perusing the rest of it, so keep writing!

  11. Sarah Rose says:

    Yes. That. What you said. Most people who have “something” that bothers them would just like to not have it, or have less of it, or not be as bothered by it. We don’t care who has the answer (or just something to try). Some people “believe in” only one side or the other, but most people would be willing to look at any reasonable chance at relief. By pitting one side against the other neither side gets a chance to make their case to the widest possible audience, and some people don’t get the help they need.

    • kimsted says:

      Full agreement. Thank you, it’s comments like this that help me feel like I am not only not crazy, I’m not alone in wanting this bull crap to change. 🙂

  12. Jenbot says:

    I’m the guy on the left who really has a gluten allergy. Even my skin cleared up after I stopped eating wheat, likely because my body is finally getting the nutrients from the food I eat now, and in part because I had eczema due to the food allergy. I reacted very strongly to the findings that people with IBS often have a lot more sensitivity than wheat gluten, and that they are often conflating a sensitivity to gluten with other foods that can cause inflammation. The FODMAP’s diet was brought up in that article, and I think they really have something worth investigating there! More than saying gluten sensitivity doesn’t exist (outside of having Celiac disease), I found that article to say that there is a lot more that you should be aware of possibly hurting your tummy, which was super useful information. The fact that all of the news outlets were saying “gluten sensitivity doesn’t exist” as a title REALLY PISSED ME OFF!!! Whoever came up with the “nocebo” description is a turkey wearing a chicken hat.

    I loved your article. We should be friends. /rant ❤

    • kimsted says:

      😀 thank you. Yeah, the method of communication is good in that it reaches the people like you who really need it. But by god, I hope we come up with a more efficient way to do it.

  13. Lauren says:

    I like! I’m on both sides of the “argument” and would love to see it become more of a discussion, a collaboration, a compliment/ complement, a conversation : ) Thank you!

  14. MaryHS says:

    I have one more category of stick figure for you. We’re the missing stick figures hiding behind the drawing — those of us whose doctors agreed we might have the condition, so we suffered through the diet, suffered through invasive testing that showed it was NOT the condition, and now we suffer people sagely informing us that we fell for a fad diet. AND we still have the original symptoms.

    I’ll be sharing your “edge-case” terminology with my primary care physician.

    Incidentally, my PCP’s practice focuses on a couple of edge-case syndromes — in this case, fibromyalgia and chronic fatigue — and they’re open to other conditions that may fly under the radar. But I must admit I’m amused that for them, they have a hammer and everything is a nail — they wanted to test me for fibro. And, well, that just was not my symptom set….

    • kimsted says:

      Ugh man, that’s a good point. Although from my personal experience, when you’ve got a weird set of symptoms that nobody can figure out, there’s really nothing for it but serially trying every weirdo diet and cure until something works. I want it to be easier than that, but in an absence of models that fit your problem, the next best thing is statistics. :/ It’s hardly efficient, I’ll say that for sure. Took me like 15 years to figure my own shit out.

  15. kimsted says:

    Hey folks! If I haven’t approved your comment yet, it’s (probably) not because I don’t love you. Just a lot to keep track of here. If your comment made me think a lot, I’ll take longer to post it.

    Also, if your comment was just plain pissy, I’m not going to publish it. If I figure out how to reply to you without posting the comment, I will.

  16. kimsted says:

    ———- [Change control] ———- 

     [6/10/2014]

    Took out you can’t prove a negative. There’s a debate around that.  
    Thanks to the person who pointed out I was making one article look like two different articles.

  17. Dyrewulf says:

    TOTALLY swiping the Caps Lock of Justice!

  18. Heather says:

    Yes, complementary. Yes, to pretty much everything.

    Wouldn’t it be a great world if everyone, “Damn That Hippie Medicine” Doctors and Complementary Medicine people, understood that very little in this wide, diverse and beautiful world is really dichotomous? Less than most people think, anyhow. More than fifty shades of grey out there.

    Everyone is not an edge case. Just like everyone is not a standard case. Not everyone who thinks that they are above average is, by definition, above average. Hence Garrison Keillor’s humor.

    Thank you for pointing out to your readers, that True Thing: Each rare condition is rare, but having a rare condition, is not. GlobalGenes.org reminds us that “If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country”. Rare being something affecting fewer than one person in 2 000 or thereabouts. There are approximately 7 to 8 000 estimated rare conditions out there. The best “Damn That Hippie Medicine” Doctors can learn to be a bit humble. Or specialize in some rare conditions, or do both.

    Sell your expertise and you have a limited repertoire. Sell your ignorance and you have an unlimited repertoire. (http://www.jonathanfields.com/selling-ignorance/) Unfortunately, there are lots of ignorant people out there who set themselves up as experts. This gives both them and the actual experts, a bad rap.

    If you are a bad salesperson, like myself, you can just OWN your ignorance and become a scientist. Never trust a know-it-all, for that arrogance can kill you.

  19. Kim, I (and many people too I guess) need to thank YOU for this healthy and cathartic rant. And this comes from a (supposedly) trained scientist, who has learnt over 25 years of experience that any single thing you hold true about the ways of the world around you may be shattered the very next day by a guy with a microscope, a telescope or just his brain, pencil and paper and lots of equations, who suddenly discovers/proves that reality was not what you used to believe. In other words, this is a long and winding way of saying that years of experience in science can only teach you ONE THING: humility about what IS, and what IS NOT.

    Let us hope that your article succeeds in being more than cathartic, and a real eye-opener to those borderline doctors who, although they have good intentions, are still to afraid of shattering the dogmas they were taught.

    Now, if only medical doctors had a SERIOUS training in statistics, a whole lot of such issues would never come up in the first place.

    Once again, THANK YOU.

    Pierre

    • kimsted says:

      OMG, what a wonderful comment! You made me feel *awesome* this morning. This is exactly what I’m talking about. I love hearing from ‘experts’ who know they aren’t, and are just trying to keep it real so we can keep learning. And, I love the way you validate that the doctors involved are mostly awesome folks who are stuck in a system, too.

      Love this whole thing. Thank you.

  20. mamielle says:

    Hi- the study you cited was testing for gastrointestinal problems related to gluten consumption . Yet most people I know who have quit eating gluten (including my 17 year old son) did so for a variety of entirely different somatic complaints such as head ache, joint pain, and brain fog. Also, the study had under 40 participants who self identified as having gluten problems and yet volunteered to eat it. Trust me, no one will volunteer for such a study if they have really gluten related problems. The study is deeply flawed.

    • kimsted says:

      “Trust me, no one will volunteer for such a study if they have really gluten related problems.”

      😀 That made me laugh. Yeah, that may well be true. It makes sense that the folks with the most severe symptoms would be more likely to self-select out of (or, just not into) this study.

      “a variety of entirely different somatic complaints such as head ache, joint pain, and brain fog.”

      Another good & interesting point.

      As for the quality of the study, I’m not touchin’ that hot potato. 🙂

  21. katie h. says:

    as a person who has had several of your aptly named “edge case illnesses”, and who has thus had to deal w/and weed through both traditional and alternative medicine, i thoroughly enjoyed your article. valid points, well-written and hilarious. made me laugh many times….good job hitting the nail on the head.
    -kt

  22. SJK222 says:

    As someone with ITP (loosely translated as Idiots with Too few Platelets), and as someone who has kept her spleen by keeping away from gluten, I appreciate this rant. And the reason I stopped gluten was my MD whose been working with naturopaths for 30 years. So these “both world” docs are out there. Problem has been I’m now in a super standard integrated insurance/medical care system. It took forever to find a doc who didn’t sneer when I mentioned oregano oil. THANKS!

  23. Another one for both the standard case and edge case practitioners: STOP FAKING RESULTS. When you do that you undermine everyone’s trust in the system and cause real deaths ( see vaccine fakery on both sides). Vaccine-Autism links are one of the best examples of this scenario. But when vaccine makers say stuff like, “there is probably nothing wrong with injecting mercury directly into your bodies, but we are going to slowly phase it out anyway”, people are going to be alarmed and stay away. And as the article says, you shouldn’t shame those people for being afraid to inject their children with mercury during the period of time when the science is unsettled. Even XKCD is guilty of this.

    • kimsted says:

      I publish this comment with props and respect. Also I, personally, am going to stay waaaaay the hell away from the vaccines debate. I don’t know enough about it, and it could easily take over the whole conversation. FYI, any ongoing comment debate about vaccines, gwan git deleted.

  24. Nathan Whiteside says:

    This is awesome. Thank you so much for bringing clarity to such a murky topic. Sharing on Facebook.

    (Also, the grammar geek in me has to point out that you most likely meant to call it “Complementary Medicine,” not “Complimentary Medicine.” Unless you really meant that edge-case medicine is defined by how it says nice things to people.)

  25. ksparroww says:

    Pretty much YES to everything you wrote!
    But, um, 2 things:
    1) I not an oversensitive jerk troll. Really.
    Which is perhaps why I feel the need to make point 2) Your super CAPS LOCK image is made significantly less super because, if I’m not mistaken, the background picture is from 9/11.
    I’m gonna assume you plucked the image from the interwebs and possibly didn’t notice that part but I’m gonna say it is a bit (albeit likely unintentional on your part) kinda uncool to put something so wonderfully goofy onto something decidedly tragic.

    Ok. That’s all. Not trying to make you feel bad – just wanted to bring it to your attention. And as I said, the rest of your piece is great!

  26. Pingback: All Known Health Frauds are, in Fact, Valid | My Good Life Yoga

  27. ecurve says:

    >Alternative Medicine People, do not say “trust your intuition,” or your angels, or your energies! Ever! Use data! And science! Please!

    This. Oh lordy, this. I was at a hippie-crunchy festival a few years back, and happened to be in a hemp clothing stall when a pair of mundanes wandered in and asked of the proprietor what the deal was with hemp clothing. Did the proprietor say anything about hemp cloth being durable? About hemp being grown with fewer pesticides, fewer herbicides, and less labor on less land? She did not. She said that hemp “vibrated on a higher plane”. If she’d made the case for hemp clothing as a practical and eco-friendly choice, she may well have had a sale. Instead, the mundanes beat a retreat double-quick, and who could blame them?

  28. Brian says:

    Thank you but you are obviously too logical, too reasonable, too…… to be believed. (Sarcasm) My biggest problem is that “we” have been misled, lied to, taken advantage of, by so many for so long that it is difficult (extremely difficult) to know who to believe. Keep reading, keep being weird, keep questioning everything and treat causes not symptoms. Not just medicine, but what you say, as you say, applies to medicine, food, politics (poli- many, tic(k)s- blood sucking insects) and religion. Thanks again for a very well thought out, reasonable, and probably giving way too many people the benefit of way too much doubt, article

    • kimsted says:

      hahaha. Why thank you, Brian. I like to err on the side of giving people the benefit of the doubt. I find that people are generally likely to behave the way you expect them to. It’s a tricky approach for a timid or vulnerable person who doesn’t trust their instincts. But if you’re not… shrug. I think it encourages people to be the best side of themselves.

  29. johanna722 says:

    This wonderfully articulated, super cool article is certainly getting around, and was posted on Facebook by several people I know, many of whom are dealing with edge case illnesses or conditions. And as I was reading it, I kept thinking “Boy, this sounds like this really cool person I used to know, back at this former job I used to have when my own pain-in-the-ass standard case but poorly handled (mental) illness flared up in an incredibly career-limiting way.” Amazing, amazing work, you. I hope it gets to “Everyone”, as well as the edge case and standard case practitioners out there. I’d also say this applies as well to pretty much every conversation I’ve seen about diet and weight loss–i.e. this diet works for these people, so it works for everyone, wait but not everyone, this diet works for nobody, rinse and repeat.

  30. kimsted says:

    Hey folks. Going to take me a while to moderate all the comments coming in. Man, this thing is getting around. 🙂

    –K2

  31. Nzo Nelson says:

    well thought out .. following the ins and outs of secular thought in two directions, as well as the reactions inthe public and the aggresive media…

  32. Kendal says:

    I love this and thank you. I hope many many practitioners of things read this and think a little.

  33. This post is awesome. I have some sort of ‘edge’ condition that is as yet unknown by both traditional and alternative medicine, and I’ve had the gluten thing thrown at me from both angles, among other things. I’ve had advice from several sources on both sides ad nausem.

  34. I love this – trained in allopathic medicine many moons ago and took a course in Homeopathy after med school… used homeopathy to good effect on myself and my kids when we have an irritating self limiting problem that costs far more to bring to the allopath. (Colds, stomach ailments…etc.) {ftr the husband calls homeopathy phony-opathy.. but he rarely gets sick.} I will point out that diagnostic fads (gluten intolerance , lyme disease etc.) are one thing– herbals, vitamins, fungi, pseudo-pharmiceuticals are another. Iodine – liquid silver – kambutcha- eating earth… not to mention the quirky diet fads — one could go on for hours and would wear out several caps lock keys.
    The real crooks are the copy writing crooks who SELL the unique supplements …. yeah it is the wild west — and snake oil is really common —
    And while we are at it why are the “Damn that hippie medicine” docs becoming knee jerk prescribers?? Seriously, I had an internist that would push medicines one visit she recommended 8 different pharmaceuticals for me and I was not even sick — it drove me crazy.

    Speaking of fads —WHERE is the research into the effects of GMO foods? Just please point it out to me … I see the organic market and see the foodies — but I cannot find the credible evidence that supports their beliefs — is it out there? Please share it with me.. thanks.

    Thanks for the rant !!

    • Christina says:

      I appreciate the point of this article and found your comment insightful as well.

      however, I have a HUGE problem with homeopathy. shaking something and watering it down by measures of 100 just instinctually (hah!) strikes me as odd and ineffectual. but science and studies back this up-homeopathy has not proven itself effective in any double blind controlled study. and the excuse? it wasn’t the right match up of ailment. I believe that homeopathy gives a bad name to complementary medicine, as does chiropractors who claim they can line up your chakras and acupuncturists (which has been shown to help with pain management) who claim they can stop you from smoking.

      I drew a dark line in the sand when my dogs vet recommended homeopathic supplements for my dog. placebo effect only works if you have the cognitive ability to believe.

      another commenter put my feelings best: stay in your lane.

      • kimsted says:

        🙂 I hear ya. I’m not going to voice an opinion on homeopathy, but I’ve got my suspicions too. In fact, tell you what, homeopathic folks. If you can produce reliable, double-blind, scientific results, hey. I’m in.

  35. Shula says:

    I like a lot of what you are saying, however, your final breakdown of edge-case and standard-case doesn’t ring true for me. In some situations, yes, that could be the dichotomy between the naturopathic approach and the Western approach. However, in situations that I find myself in, it is more a dichotomy between preventative care and [attempted] curative care, both of which can be approached from either the so-called alternative side or the mainstream medical side, although in most cases it seems like the mainstream side is trying to clean up messes based on a handful of symptoms and the “alternative” side is trying to prevent messes based on the whole person. I try to make use of both techniques to both prevent messy situations in my body and address the ones that manage to break through. You touched on this with the comment about bottles of pills versus not eating McDonalds– but any sane mainstream doctor would tell a patient not to eat four McDonalds sandwiches a day, also.

    • kimsted says:

      Totally agree, Shula. That’s another big part of the complimentary. I do think “reactive medicine” has it’s place, and I see some improvements in allopathic medicine reaching farther into preventative care. But again, the full body system is complex, and requires a lot of focused attention to assess. A doctor who sees 60 patients a day, is just never going to have the headspace for that. Folks who want that level of medical insight, move (we hope) into alternative medicine, where doctors spend more time with them, track their symptoms & behaviors (not JUST their tests), and develop a lasting relationship.

      Conventional doctors used to do that too, back in the day when they worked in small towns. Now most of us live in cities, and doctor visits are faceless, rushed transactions based pretty much entirely on the results of some blood test turning into a pill bottle. I wonder what we could do to bring that system back into a more substantial, lasting relationship.

      Interesting to think what role insurance plays in that. How often have you had to switch docs because your insurance changed? Then, what factors contribute to having doctors be so rushed with patients – what’s going on on their end that forces that? Hospitals wanting profit?

      You’ve made a good point, and you’ve got me thinking about the next layer of systems dynamics that underlies these issues.

  36. rootietoot says:

    Well said! Now, I swear by ginger tea and mint popsicles for an upset stomach. I make my own salve from lanolin, beeswax, and lavender oil for chronic excema (which my Real Doctor says is as good as it gets, really), and horehound candy is great for a cough, BUT…if someone isn’t a board certified medical professional and goes by the non de plume of “Starlight”, I will not really trust them for treatment of the kidney diseased caused by taking too much medical professional-prescribed medication (I knew it was a risk, and was worth it, and Starlight’s suggestion of St John’s Wort was well intentioned) Also, people are scared of Science, of things they don’t understand, and the media has us believing that Big Pharma only exists to bilk us out of money. How much better is it to chew on a God-given twig than take a mysterious man-made Who Knows What…Much better! Trust me! I compost!

  37. Great article. My only critique is that those who sell natural medicine in a store cannot diagnose, prescribe (give dosage), claim to cure, or do anything an M.D. could specifically do. This is because they are not M.D.s. so that person behind the sales counter whom you asked for dosage info was in a tight spot. You got a bullshit answer on purpose, to avoid huge fines and not have her business shut down. Please don’t treat retail store staff like doctors, because were not and expecting that information from us is not only looking for info in the wrong place but it puts us in a bind. We can use what are called structure-function statements to talk about products and that’s about it. If you want specific dosage info then see a doctor or read the label, but don’t ask a retail clerk.

    • kimsted says:

      I agree with you on premise that folks should not do that. In this particular case, though, this was not professionalism. I’ve heard the employees at that place give medical advice freely, hundreds of times. (I used to go there a lot.) I think if everyone respected the professional guidelines you lay out here, we’d be in a better position.

      Thanks for bringing up the point.

  38. camcritter says:

    This was a thing of beauty. Intelligent, well thought out rant. You managed to keep it on track and use good data while being spitting mad. Thank you!!

  39. Hal Lee B says:

    THANK YOU. Might you address a few words specifically to the anti-vaccine movement? Yes, some people may have reactions, but that does not mean everyone should stop the magic techie standard vaccine regimen.

  40. Laura says:

    I’m an edge case.

    No way should I have had a heart attack at my age–40–and general health (no diabetes, no clogged arteries, training for a triathlon).

    In the hospital, doctors could tell me *what* happened–my right coronary artery spontaneously shredded itself–but not WHY, or whether it would happen again.

    They pretty much patted me on the head, told me it was rare–80 percent of heart disease is preventable; spontaneous coronary artery dissections are in the 20 percent that are not lifestyle-related–and to go home and not worry about it, see you at your follow-up in three months.

    Now it’s not a massive double-blind study, but thanks to a wonderful doc at Mayo Clinic who actually listened to us SCAD patients, there ARE research studies on spontaneous coronary artery dissections being conducted. And several papers have been published in reputable medical journals.

    But because we ARE the edge cases, the long tail, the far end of the bell curve, we the patients had to take the lead.

    http://www.mayoclinicproceedings.org/article/S0025-6196%2811%2965214-2/abstract

    It’s true that that study above is very small. But it has spawned two much larger ones that are ongoing.

    http://newsnetwork.mayoclinic.org/discussion/scad-spontaneous-coronary-artery-dissection-studies-at-mayo-clinic

    And maybe it’s placebo effect or maybe not, but I saw firsthand that when my husband had a pinched nerve in his neck that was causing shoulder and back muscle spasms so severe that he couldn’t sleep laying down for two weeks, not even with Flexeril and other stronger drugs… acupuncture worked.

    Another example: I bruise if someone so much as looks at me cross-eyed these days, but if I put arnica gel on the bruises, they don’t seem to get as bad and they seem to fade faster. But I have to go to a crunchy hippie store–Earthfare, Whole Paycheck, etc., to find it.

    I realize these last two are personal anecdotes and not data.

    The point I took away from the article was that conventional and complementary medicine might each learn a bit from each other if they both sat down, shut up, and listened to each other–and most of all, if they would *both* do more listening to WE THE PATIENTS.

    • kimsted says:

      Oh man, wouldn’t that be fantastic? I remember once I was dealing with a really hard Problem with my alternative doc, and she was running some tests and getting startling results. I showed them to my regular doctor, thinking: tests! Numbers! Now surely we can communicate! His response: I haven’t used this lab before, so these results are meaningless to me. I reply: well, they’re not meaningless to my alternative doc, and we think it’s a bit deal, so is there any way I could get you two on the hep phone with each other? He was baffled and alienated even by the idea of it.

      When was the last time you had a doctor on either side, volunteer to reach across the turf war lines, and communicate with your practitioner from the other discipline? In 20 years of using both sides regularly, I have never seen it happen. Can you imagine how much more they would learn and understand, and how much faster we would get better (and with so much less cognitive dissonance, too!)?

      • You bring up probably the most important point in all this…communication. Something that is often the root of all problems in a relationship, whether personal or professional. Neither side communicates with each other. Most likely because they are speaking different languages (different lab work, diffferent modalities, different terms for illnesses). So we get stuck in the middle, doing the translating…despite the fact that WE are underqualified to speak either language, are in pain, scared, and just looking for relief/solutions. Somewhere along the way, we as patients need to strongly remind BOTH sides of the coin that we are the important variable in this conversation and that they need to learn to either listen to US or talk with EACH OTHER. In allopathic medicine, my PT communicates with my PCP who will talk with my Endo. But do any of them talk to my Chiropractor? Oncology found years ago that a holistic method is best for patients: nutrition, acupuncture, chemo, radiation, talk therapy…because it works when they are done together in harmony, you have a balance and well-rounded approach toward treating THE PATIENT. The rest of the team needs to wake up to that too. Allopathic Drs: we are not our diseases. And sometimes when you hear hooves, it is Zebras. Alternative Med Drs: Pharm and Medical community are not money hungry devils out to destroy us. This is the Healing Arts.

      • kimsted says:

        TELL IT. Go tell it on the #$*@! mountain!

        Ugh, I could not agree more. /me shakes fist at the sky

  41. Kaylee says:

    Awesomeness. You hooked me with the gluten cartoon (as a member of that small little group on the left, I loved it!), and then I got so much more than I anticipated!

    I have lived my life on the “real doctors, real medicine that comes in plastic, childproof bottles” side of the debate. (I once went so far as to tell a friend I didn’t think I could “allow” her to birth at home. I know! Wow. I was THAT into the “real and correct” stuff. (We’ve worked it out. It involved me groveling. A lot.)). I thought the other “side” was somewhat akin to the dark side of the force…populated with weird looking folks looking for shady deals.

    And then I actually tried some of the “dark” stuff. It started innocently with a simple lavender oil (that should be safe-it’s in the big name baby products…), and then progressed from there. I’m now a Reiki practitioner who sells oils!

    Tangent aside, I see a place for both “types” of medicine, and love when they can be used in harmony, absent the fear mongering and vitriolic name calling that so often occurs between them. I’m all for natural remedies, used with wisdom (and printed usage instructions for those whose intuition may not be working correctly. -tongue-in-cheek-). And I am immensely grateful for those “standard” medical innovations that have been life saving for me and those I love. (I just wish they were more concerned with actual cures than with symptomatic care which perpetuates more symptoms, pleasing none but the shareholders.)

    Thank you for this article!

  42. RamblinCat says:

    “…the human body is an incredibly complex system of feedback loops, which means that multiple conditions can combine to create emergent effects.”
    Here’s an article you might enjoy on genome expression. Very long, but touches on this point.
    http://aeon.co/magazine/nature-and-cosmos/why-its-time-to-lay-the-selfish-gene-to-rest/

  43. bearfairie says:

    Sing it, sister. Speaking as a practitioner of evidence-based complementary care, I couldn’t agree more. The other thing I’d kick in to the conversation is the concept of, “stay in your lane, aasshole.” Complementary care folks shouldn’t be trying to practice medicine without a license. Neither should natural grocery store employees or random nonmedical people on the internet. And I hate to say it, but doctors who haven’t been trained in actual evidence-based complementary care probably shouldn’t be talking about stuff in which they have no training, not unless/until they get some training. There are actually several good studies on specific techniques ranging fron herbal protocols to acupuncture to yoga to biofeedback meditation, but you have to know where to look, and know how and when to apply these types of techniques. Basically, yay for doctors who practice mainstream medicine, yay for nutritionists who talk about food, yoga instructors who teach yoga, and hairdressers who cut and style hair. STAY WITHIN YOUR LANE.

    • kokuorei says:

      Here here. This is one of the biggest problems I have. I am a practicing Reiki complementary…person (is person a good word here? I’m going to go with it). The biggest problem I have is that people keep coming to me wanting help with things that I have no idea what I’d even be trying to talk about. An hour long massage with spiritual overtones has nothing to do with cancer (for example). Talk to your doctor.

      When I tell them that they need to go to a doctor, they get upset with me. “But, you’re suppose to be able to fix me” they’ll say. Which, my response is normally.

      Huh? When did that ever enter the contract? I’m suppose to make you feel good, and let you work out some of your own emotional problems. I’m not Harry Potter and can wave a wand around and “poof”, your glasses are fixed. You need to talk to somebody who actually has a clue how to fix it, and get some help. Just because a Doctor to you is somebody who pokes you with a needle and charges you hundreds of dollars for it (because that person might just be a hippy) doesn’t mean that they don’t know what they’re talking about.

      Staying in your own lane is wonderful advice, and handing somebody over to the next lane when it gets outside of your zone is the next best bit of advice that I can give. Work together, and see what happens.

      • kimsted says:

        Omg, I love you. ❤ ❤ ❤

        A body-care professional who is not pretending to know or solve everything. Can I buy you a fruit basket, or something? 🙂

  44. Noah Burke says:

    Nailed it! People can be led like sheep with new discoveries of knowledge. Then some assholes will try to just capitalize financially on this knowledge, while others will spred the knowledge out of love/ just trying to help others, but sometimes they are misinformed. WE all must identify and weed out misinformation and the assholes who are just trying to make $ off us.

  45. Tina Lee says:

    Rah Rah Rah. Yes. Thank-you. etc.

    • kimsted says:

      No, Tina, thank YOU for getting involved.

      Think it was too pissed off? I’m obviously pretty not under the collar about this one. But I’d rather start conversations than fights.

  46. ricopags says:

    My sincere thanks for such a clear-headed breakdown of the distinction between snake oil quackery and real-though-not-yet-proven remedy.

    • kimsted says:

      You are most welcome, Rico! Check out my former comment: curious about whether you faithful readers think I took too heavy a hand on this one. I don’t usually let myself get this pissy when I write. 🙂

      • ricopags says:

        I would say the response to the post should indicate you’ve struck the right balance here, pissy pants or no ;]

        You’re cool; I like you. Keep writing things so I can keep reading them and if you’re ever in Phoenix I would love to meat over a bowl of pure gluten.

  47. ricopags says:

    What an incredibly well put article. My sincere thanks for so clearly elucidating something I’ve struggled with personally.

  48. james curcio says:

    Best thing I’ve read on the subject in a while.

    • kimsted says:

      Thanks, James. I hope it starts some good discussions for you. If it sparks new thoughts for you (and this goes to all of y’all), I’d like to hear them. Feel free to leave more comments here.

  49. martinmackerel says:

    Complementary medicine.

    Good rant.

  50. sumitsumit says:

    Good points here, Kim. I would argue, though, and this may be implicit in your final statement,that “working from data, creating data, doing science” are not enough — doing randomized, controlled double-blind studies makes a huge difference in terms of whether one is finding causalities or just correlations or the placebo effect. Many (not all) of the alternative (complementary) medicine studies do not do this, and even though they have data, it doesn’t mean much. There certainly are instances of good controlled studies for complementary medicines, and I wish those were more broadly spread rather than the marketing gunk you rightly rail against above.

    • kimsted says:

      One, HI SUMIT!

      Two, I fully agree with you. Take for example energy medicine. Say what you will, pro or con. DO SOME STUDIES. Use control groups! Homeopathy, also! If you don’t even try, nobody should listen to you!

      THAT SAID. And this is a biggie. Since rare syndromes are rare, it can be difficult bordering on unrealistic to actually identify the people who are likely to be most impacted by a specific treatment, and combine them into a large enough study. Also – and I can barely write this while remaining seated – the human body is an incredibly complex system of feedback loops, which means that multiple conditions can combine to create emergent effects. For example, I have a genetic disorder. Some of the people who who have it do ok, and others get super sick. I was one of the latter, because I also had a different weird circumstance that exacerbated the effects.

      The idea that people have one ailment (or, health quirk) at a time, which exists in isolation of other biological and lifestyle factors, and therefore behaves the same way in all people, is just plain mythology. It’s a decent model to use in order to do science and make progress, and it’s easier to wrap our heads around that than look at things the way they really are. The problem (K2 drinking game: drink once every time she says) is when we start to BELIEVE it. A model is just a thing we use to try to hold complicated things in our little human brains. It isn’t the truth.

      Reality is complicated. We pretend it’s less complicated in reorder to do science (yay science!). But the fact of the matter is that human behavior! human nature, and human bodies, will never 100% map to what science can document. It is a a reductionist stick figure of the truth.

      • smurfsahoy says:

        It’s not just rare conditions. It’s rare outcomes. For example most vaccine trials have like 2, 000 participants tops. Enough to show the vaccine does something? Yes. Enough to show it doesn’t give you kidney failure 1/5, 000th of the time? Mathematically impossible without more participants. People ranting about how vaccines totally definitely cause XYZ probably don’t have data but NEITHER do people ranting about how they don’t cause XYZ as a rare event. It’s all different facets of the same concept as the article. For probably MOST diseases, we are all still cavemen huddling in the dark going by anecdotes, not conclusive studies, and sooner or later you have to just embrace and deal with that.

      • kimsted says:

        OMG, another comment that renews my faith in the world. Thank you. In a response to an earlier comment, I talked too about how people usually have *multiple* factors at play. People aren’t models of people, where you only have one physical quirk or illness at once. People are complex systems, with lots of shit going on, and some of it balances or exacerbates the rest of it. so yeah, maybe most people don’t get sick from vaccines, but maybe some people do, because they’re producing less or more of whatever blood factors interact with the vaccine, because of whatever other weird crap is in their history or genome.

        Drives me freakin’ nuts. The problem is that we want it to be simple. It makes us feel safer. But the reality is that a lot of the time we have no freaking idea what’s happening to our bodies. Doctors don’t either.

        As my friend constantly points out, the entire premise of House is that their diagnoses are wrong four times before they get it right. For eight seasons. Eight seasons of a worldwide audience saying: “sure! that seems plausible!” **What does that tell you?**

      • Nick says:

        These were the greatest 4 paragraphs ever written. Thank you.

      • kimsted says:

        Which four paragraphs?! The suspense is killing me.

    • Jeff says:

      I think the placebo effect is fascinating — and in fact could well be behind historical success of “non-mainstream” practices. At least sugar pills (or vastly diluted something-or-other that highly resembles sugar pills) do no harm, unlike many historical medical practices.

      Why can doctors not prescribe placebos? Well, today they would probably be sued for “not doing anything.” But when side effects of treatment can be severe, “nothing” with a ~30% improvement might often seem pretty darn good.

Leave a reply to Noah Burke Cancel reply