Alternative Medical Ethics?

In observance of the impending imprisonment of "Secrets the Government and Real Doctors Don't Want You to Know" author, late-night infomercial guru and scammer Kevin Trudeau ...  I thought a bump on this post was apropos.  

The FTC has been clamping down recently on false claims of miracle cures.  While Trudeau is ultimately being sent up the river more for legal financial issues, I hope this is the beginning of one of those pair of dimes shifts the supplement shills are always talking about.   

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Original post date 8/11/13


Disclaimers:

1.  I want to make it clear up front that I am not making light of those who have health conditions for which they cannot find solutions, be it through the medical establishment or alternatives.  This post is not about that, except to highlight how unfortunately such circumstances can make people susceptible to being taken advantage of.

2.  I'm not saying mainstream medicine has all the answers or the only answers, and I'm not saying that all treatments that would fall under the umbrella of "alternative" are ineffective or woo woo.

So, with that said, I laid out a scenario in my Medical Ethics post to highlight some practices in the alternative medicine realm that would be questionable (and in some cases illegal) were they engaged in in a traditional practice.

I very often hear that modern medicine puts no emphasis on diet in regard to health.  That is taken almost as a given.  And yet, what is it many are fighting?  The *dietary* recommendations for preventing heart disease or for treating diabetes.  So, while these may or may not be correct and/or science-based, it is kind of hard to substantiate the charge against the mainstream that the role of diet is disregarded when arguing against the dietary recommendations.

I guess it almost goes with the territory, but revolutionary dietary edicts seem to go hand in hand with seeking medical advice and treatment outside of the mainstream as well.  In the paleo realm you hear the term "evolutionary medicine" quite a bit.  In Paleo™ this means some sort of paleo diet (definition = whatever that means to you) to cure as many ailments as Robb Wolf can fit on a whiteboard.  If and when that fails to produce the miracle cure and you are still "broken"?   Functional Medicine to the rescue.    This is where the whole movement is really going off the rails because apparently "just eating real food" has now morphed into accepting all manner of woo woo.  Yes, *the* most science based diet on the planet (just don't ask for a definition) is complemented these days with non-science based treatments.  They are also big fans of self-diagnosis and promoting books and "experts" (which are not) for treating various medical conditions.

In my hypothetical I was really getting at a few practices that folks would find fishy in the mainstream but seem to have no issues with when engaged in in this alternative medical realm -- or perhaps they don't realize this is going on?   

Poorly defined or outright unrecognized illnesses:

This past March, according to Twitter "adrenal fatigue" was THE major topic of discussion at PaleoFX13.  It seems like half the paleo population is suffering from adrenal fatigue, though the thought seems to escape them that their superior diet might in any way be contributing to their "plight".  I put that in quotations, because the official opinion of the Endocrine Society is as follows:

• “Adrenal fatigue” is not a real medical condition. There are no scientific facts to support the theory that long-term mental, emotional, or physical stress drains the adrenal glands and causes many common symptoms.
• Adrenal insufficiency is a real disease diagnosed through blood tests.
• There is no test that can detect adrenal fatigue.

How is adrenal fatigue “diagnosed”?

There is no test that can detect adrenal fatigue. Many times, a person will be told he or she has adrenal fatigue based on symptoms alone. Sometimes, a blood or saliva test may be offered, but tests for adrenal fatigue are not based on scientific facts or supported by good scientific studies, so the results and analysis of these tests may not be correct.

Enter the "Paleo Experts" ... like Diane Sanfilippo of Practical Paleo and 21 Day Sugar Detox fame writing a guest post for Robb Wolf:  The Real Deal On Adrenal Fatigue.  Despite there being no scientific evidence for this disease, she wrote in 2012 of her experience training for a half marathon five years prior.  Now although paleo is supposed to fix everything, a year after writing this, and listing other non-science based resources about adrenal fatigue, Diane confessed to being chronically fatigued on Facebook (and there has been no update other than to admit to taking back up coffee drinking while she completes her books on how to develop an eating disorder if you don't already have one "detoxing" from sugar.)  But I digress a bit.

A Google Search on paleo and "adrenal fatigue" will net many hits.  It seems almost every guru has been afflicted themselves ... which is odd, because usually this is while on paleo, or persisted, or worsened, but the diet is never scrutinized.  One of the great "cures" these groundbreaking gurus will push is for you to get adequate sleep, which is pretty much like telling an insomniac that sleeping more is the solution to their problems when being able TO sleep is the problem.  

Questionable diagnoses and tests:

So, tying this in to the medical ethics post, and removing us from the paleo community for the time being, here is one site that comes up when searching for signs of adrenal fatigue:  Adrenal Health.  The banner on this "women to women" website says "changing women's health naturally", and the first line of the article is "there's a lot of help here" complete with a nice picture of a female OB/GYN.  Keep in mind, there is no such medical diagnosis as "adrenal fatigue", and even if they don't use the term here, this is the "disease state" they are trying to heal.  You see, the site is really a front for selling supplements.  

How many times do you hear that your doctor only wants to diagnose you with something so they can get you out the door with a prescription for a pill.  Big pharma is happy, they're happy, everyone's happy except for you.  And to add insult to injury, the pills don't work and/or have some nasty side effects ...  But the thing is, for all the problems with our mainstream medical establishment, there are some regulatory -- including self regulatory -- accountability and safety mechanisms built in.   If adrenal deficiency is suspected, there are constellations of symptoms accepted for such a diagnosis, routine tests from which a concrete diagnosis can be made, and (usually) treatments that have been tested with a  proven track record of efficacy.  If you are prescribed a drug, that drug has gone through a rather rigorous approval process (even fast-tracked drugs go through more screening than 99.99% of supplements out there) and been shown to be effective to some extent in at least some considerable portion of the population.  Here is where you and your doctor need to work together and where I cannot encourage you enough to do what you need to do to read that fine print for any drug before taking it.  But also, the recalls from market only occur because of doctors reporting "events" that occur with their patients, something that is missing entirely in the alternate treatment realms.

But if, instead, you land at a website like the one I linked to, or any number of paleo sites these days, the last thing you will be encouraged to do is to see your doctor.  Worse, you may be actively dissuaded from doing so, or at the very least be made to seem foolish to even want to, as the guru running the place mocks mainstream doctors.  Rather you may likely be encouraged to self diagnose from a list of symptoms or perhaps to get a hormone workup like the Poliquin BioSignature panel that used to be (not sure if he still promotes it) heavily promoted by Robb Wolf.  This is but one of many outfits marketing various in-the-mail and at-home diagnostics that may or may not even be accepted.  The people suggesting these tests usually have a financial player in the game.  Indeed, though it is generally mainstream testing that is provided with his Track Your Plaque program/website, Dr. "Wheat Belly" Davis' website and any free materials on that blog existed to promote that business venture long before he got into science fiction writing.  

So, in Medical Ethics, this was one of the scenarios I twisted a bit to be "fishy" if it were done in the mainstream context, but is done in the self-diagnosing alternative realm all the time.  Now, many of the gurus use the services/tests they promote, and there's nothing necessarily nefarious about suggesting to others that which you have found helpful to yourself.  But it is one feather to be tucked into the cap of "potential conflict or bias hat" when the person suggesting a test stands to gain financially from that suggestion in any way.  Many of these private clinics house their own labs or contract out testing to other labs where there are financial reciprocal relationships in place.  For all the drawbacks of our medical insurance system, it is worth noting if and when any test would be covered by an insurance program (even if it's a "Cadillac plan" and not your own bare bones one) you have some assurance that it is a legit test.  It seems that most of these clinics that operate within the system get around the conflicts of interest by doing so outside of the insurance system.  Again, not saying that's a bad thing per se, just that it is worthy of consideration, especially when you are often paying substantially from your own pocket "for your health".

Unproven treatments?

Another common aspect of alternative medicine I sought to highlight by analogy in the Medical Ethics post, was having a financial stake in the treatment.  For all the casting of mainstream doctors as unfeeling pill pushers, to the best of my knowledge it is illegal for them to have any stake in the treatments they provide aside from providing the service themselves.  This puts surgeons and the like in an obvious conflict of interest position that you can't really get around except by seeking a second or third opinion.  But for your general practitioner, their motivation should be in patient referrals to their friends and building a reputation as a good doctor who helps their patients and improves their lives.  Thus the impetus would be to advise the best treatments, but also to take into consideration their patients' means, as well as advising on risk/benefit of various treatments.    I really don't get what Robb was whining about vis a vis medical treatments not being science based in this post, because while some dietary recommendations are flawed, he pretty much describes how mainstream medicine IS science based -- complete with outcome analysis and accountability.   It may take a bit of research, but data is out there on various treatments and the efficacy of said approaches.   Alternative approaches?  Not so much!  Further, if someone has an adverse reaction to some supplement, this will not be entered into some database somewhere so that some meta analysis or such might find the connection.   I know when my Mom had breast cancer 20 years ago, she was presented with the 5 year survival rates for various options, etc.   These were discussed with the doctor, and further with a treatment coordinator, and, of course, family.  Contrast this to a book promoted on Jimmy Moore's podcast attributing a cancer cure to a ketogenic diet (nevermind the chemo and traditional treatment received).  Is there any data available for this?  No.  Heck, how many even realize that a ketogenic diet doesn't always work for epilepsy?  It doesn't.  Just like some drugs don't work for all who take them but they work wonders for others.  

To me the supplement salesmen should be viewed with extreme skepticism.  Often, as is the case with my example website, you have all three aspects *conveniently* in one place -- awareness, test/diagnosis, treatment.  This is cause for extreme caution because chances are, you are being "marketed to" under the guise of being "helped".

What if it were your regular doctor?

In a nutshell, the vast majority of promoters and purveyors of alternative medicine are engaged in practices that would be considered unethical in most mainstream contexts.  That is, they stand to gain financially from testing, to diagnosing, to treatment of various conditions in a manner that may at best bias the treatment/advice given and at worst qualify as an outright scam.  There is WAY too much of this going on in the so-called paleo community where under the guise of "evolutionary medicine" all manner of woo woo is being cultivated.   And they tend to operate on the fringes where mainstream medicine sometimes fails to provide answers.  Diseases like IBS and other digestive issues, MS, chronic fatigue and such, even cancer and Alzheimer's.    But the reality is that the alternative approaches lack accountability almost entirely.   If your doctor is in the habit of ordering excessive tests or odd prescription habits, it may eventually get caught or if you complain get looked into.  You might have some recourse.  There is little if any such safeguard in the alternate realm.  And if a treatment doesn't work?  "Well, it works well for most people so perhaps you're just unlucky" ... No way to check that, of course.

Remind me, what does this have to do with Paleo again?

So if someone asks me "what can be wrong with just suggesting this diet" (however nebulous the definition may be) I would first point out that paleo these days goes WAY beyond a bunch of arbitrary food lists and wearing Vibrams.   I'm not the only one to take note:  Paleo and woo: Bad company until the day they die.

Many of the so-called paleo physicians are not medical doctors.  They are licensed in accupuncturists, chiropractors, or naturopaths.  Many of these practice functional medicine under the auspices of the Institute of Functional Medicine certification.  Others "study" proprietary methods such as Kalish.  All but a few of the nutritionists are the product of degree mills and/or have certificates in proprietary methodologies such as those of Poliquin and Chek.  Still others have certs from what can only be described as MLM "schools" where you study fad diet theories online and are coached in how to start your consulting business such as the Institute of Integrative Nutrition and the Nutritional Therapy Association.  Those who are legitimate doctors are quick to remind you that they are trail blazers and spreading the word that about what they didn't learn in medical school.   Sorry folks, absent evidence to the contrary, that phraseology is synonymous with "I'm just making this sheet up".   Ditto the few true RDs.  In many ways, the paleo community has become the marketing arm for a network of alternative practitioners through Robb Wolf's physicians network, Primal Docs, guests interviewed on podcasts and even that Ancestral Weight Loss Registry is really a Marketplace for services.  

What is interesting is that these docs are the sort that prey on vegans, or practitioners of raw or other natural food consuming philosophies.  The paleos are apparently ripe for the picking -- what with the rebel streak and all.  

The Paleo Way

Chris Kresser states it most succinctly, he prefers to treat health issues with diet then supplements then drugs as a last resort.  So you have a diet for which wideranging health benefits are claimed including various testimonials and poster cases for any diet that is even close to paleo.  But then you don't get those spectacular results so you are encouraged to "paleo harder" and there are any number of books out there with evermore restrictive protocols directed at your real or imaginary malady.  To repeat, I am not saying these never work, just that they don't always, and when they do, it might even just be a coincidence or a single food that was eliminated amongst several that is the one real culprit.  And yet still there are those that aren't helped, not to mention those who get worse or develop new maladies!  Now it's supplement time, and more supplements .. but at least you aren't taking the horrid XYZ medications.   

The sentiment in the community is definitely not to work with your doctor but rather to find a paleo-centric one.    I wish there were more of a practical middle ground and less of a push for full on allegiance to rebel causes.  By that I mean that I can get on board with the basis of paleo that is a real foods approach (though that has been marketed and such so that message is largely obscured), but you really lose me with the cure-all protocols, supplement lines, detoxes and cleanses, and just really bad "science based" woo woo.

What I see is getting the foot in the door with conditions that are poorly understood.  I think the whole gut dysbiosis/inflammation/autoimmune thing is ripe for shenanigans.  The general sentiment is that doctors have no clue about these things, and while I'm sure many GPs are lacking in knowledge, there are a lot of good specialists out there.  Specialists that deal in outcome driven treatments and at least less likely to be personal profit driven ones ... because such schemes are frowned upon and at least somewhat regulated against in the mainstream.  The paleo folks act like nobody has a clue about celiac or food intolerances and such.  If many of these people invested a fraction of what they do on alternative treatments into getting tested comprehensively they probably would be far better off.  The concept of fecal transplants developed within the mainstream medical establishment because it was shown to be effective.  For C.difficile.  This is great, but it also doesn't mean that this will be effective in other situations nor does it mean that every gastric blip is due to SIBO.  

The alternative medicine folks are often treating phantom bugs with dietary interventions that wouldn't stand a chance of working even if the bug were real.  I hung around Paleo Hacks for long enough to see that some of the eating patterns just as easily disrupted digestion and metabolism as fixed them.  Based on one study and the musings of a single chiropractor, there are literally thousands who believe that low stomach acid is at the root of their problems.  This is mentioned often by Nora Gedgaudas, Diane Sanfilippo, Chris Kresser and Robb Wolf and can be traced to Charles Poliquin ... who got the idea from Bob Rakowski who is affiliated with Erwan Le Corre's MovNat.  (See?  Incestral is not about AHS, it is about the community ... all of it).  First of all, it's insanely inflated to claim that 98% of the population may have some degree of impaired stomach acid secretion.  There is NO, as in Z.E.R.O. evidence to back up that claim and ample support that hypochlorydia is exceedingly rare in those under 50-60 (in the studies I've seen, as they more narrowly stratify the age groups the lower age limit where you see significant rates gets higher and higher, in other words over 50 comes from studies where that group included all folks over that age and the 80 year olds skewed the numbers).  And yet, this is in Nora's book, mentioned copious times on Diane's blog and podcast ...  Further, there is no evidence that the supplement betaine HCl is effective.   

The Full Paleo Monty:

As for Chris and Robb?  Well, I kinda had them in mind when I had this idea for these posts ... though they are certainly not alone here.   You see both have always been pretty flexible about carbs and paleo.  Both have put quite a sciencey edge on their materials -- oddly enough I would say that Chris bests the "former research biochemist" (cough) with some pretty quality podcasts over the years.  Chris was more "beyond paleo" before Robb pulled him back when they went into the supplement business together which was a gut sucker punch felt round the community.  Of course nobody dared criticize openly ....

When Paleologix was first launched, it was billed as being the only "clinically proven" supplement line for the various ailments.  It was to make the transition to your healthy paleo life easier.  Odd since Chris wasn't even paleo and to hear Robb tell it, paleo is the magic cure for everything that works almost overnight.  After the initial shock wore off, a quick read made it very clear -- these supplements were to ward off the bad reactions one might have to adopting a low carb, high fat version of paleo -- everything from the cravings and fatigue to the digestive issues -- with a dose of detox & cleanse woo woo thrown in for good measure.  

I have never quite been able to read another blog post by either of these two (or in Robb's case even by guest bloggers) the same way again. Although I'm not a fan of Danny Albers, I believe in giving credit where it is due and saying "spot on" for this post of his: Fear Based Marketing - Consumer Education Effort. Here's the scenario he paints, and I'd rather you go to his post to see his graphic where he marks up a post of Kresser's to illustrate. But here's the points:

1. Address a health concern most people never considered
2. Throw a whole bunch of scary facts out, use words like "most people are not even aware/are undiagnosed/is never discovered"
3. Explain how this undiscovered, undiagnosed condition that you could have without even knowing it is derailing your entire life!! OH NOES!!!
4. List a bunch of symptoms, list enough symptoms that almost anyone can find one or two that apply to them
5. Explain how this can totally ruin your life!
6. Be sure to outline both how conventional approaches fail, as well as how alternative approaches fail**
7. Reassure them that if they stay a consumer of your information, you can help them, you have the answers they need (just in case they have this undiagnosed condition)
8. Build trust by throwing you a life raft

With the exception of the ** on #6, I think this is pretty spot on.  I don't see much if any critical attention directed at where alternatives fail in this community.  That doesn't jive with the "we're all in this together even if we disagree" line.  But you've got Chris with a bunch of online content (and a new book) to complement his "clinical practice" and you've got Robb with his physician's network run by -- oddly enough -- one of the few with real nutrition credentials, Amy Kubal but who is suffering from life threatening health issues herself (that have little to do with what her functional medical doctor is treating her for).  And they write posts about adrenal fatigue and digestive issues and being broken and fixing things and success stories and on and on and on.  And on the sidebars you are encouraged to buy the books and the DVD's and now ... the supplements.  

Everything that Big Pharma is accused of with their ads targeting the general public.  You know ... the ones with a list of symptoms and the "ask your doctor for our chartreuse pill" cure.  And the doctors are accused of being in bed with the pill makers and making money off of you hand over fist while intentionally keeping you ill.    You have it all right here.

How is it different than what so many in paleo, of which the Paleologix team is but one example, do?  They have cultivated the fake maladies of low stomach acid and adrenal fatigue on their blogs and podcasts and in other venues.  Convinced you that your stupid regular doctor is clueless about this.  Attributed so many symptoms to these phantom conditions you can't help but think you must have one or the other or both.  They sell you on the tests, if there even are any, and those that exist are often inconclusive anyway or meaningless.  They sell you the cure in the form of overpriced supplement blends that don't fix the problem you probably never had.  When all the while they know that the adrenal fatigue plaguing the community is traced to chronic carbohydrate restriction and/or general undereating in the vast majority of cases.  And who knows what they are thinking with the BetaineHCl Adaptagest stuff.  The "clinically proven" has been replaced with softer wording citing Kresser's experience in his clinical setting.  There is no accountability there folks.  This is no more credible than claims made on a late night infomercial.   

All of the suspect elements in my hypothetical scenario are well represented in the so-called alternative nutrition and medical information on the web.  Only it gets even one worse.  If you see one of these practitioners in the flesh, they are at least regulated in some manner by the state you live in, even if they aren't an MD.  On the internet?  You technically cannot give out medical advice, so even the MD's are not regulated so long as they are careful not to anger the authorities with their careful disclaimers.  So while this is clearly going on every day, you already agree whether you read the disclaimer or not, that they aren't really doing so, and they have ZERO responsibility for any consequences of their advice giving actions.  

I fully expect to get blamed for being a naysayer for pointing this out.  There I go, tearing down again and getting in the way of folks just wanting to help people.  To those I would say you need to wake up and smell the greazy coffee spilling from the bullethole riddled mug.   It is my hope that posts such as this help those who might get caught up in the hype to see the reality before losing their shirts and quite possibly damaging their health further.  Real ailments should be able to be diagnosed with some concrete test.  If you think you have reactive hypoglycemia or Candida or SIBO or whatever, get it tested for.  Properly.  If there is no reliable test, that should be clue number one.  But if you can't test, you can't even know if some regime you adopt is working.  The human mind is highly suggestible and there's a reason for single and double blinding with placebos in human clinical RCTs.  For all the self quantifying n=1 stuff, the remarkable lack of being able to track/document many of the paleo cures is astounding (and more than a little curious).

Lastly, I admit feeling quite agitated at the moment thinking about the utter scam that is betaine HCl.  It is bad enough to promote taking that supplement, but to then take your customers to the cleaners with your pricing?  Perhaps one of these days I'll write up the dirt on that stuff.  It won't be pretty if/when I do ... just don't shoot the messenger ;-)

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BTW -- since I know someone is bound to bring this up in comments -- nothing here conflicts with my support of Examine.com's product here.  It makes the case actually.  If you are going to supplement, do it smartly.  Investigate the claims made by interested parties and look at the doses in their products if there is something to the claim.  Look for evidence in humans, not mice or worse yet, test tubes.  If a proprietary blend does not specify, then your smartest move is to reconstruct that with known clinically effective doses, presuming there is evidence of such.  The guide is a tool for doing that and doesn't promote any particular supplement or brand.