Maintaining A Belief When the Evidence Says You’re Wrong

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I get ideas everyday of things to write about: tips, links to articles, strings of thematically similar posts on Facebook. I admit, I’m kind of a slow writer, and I often start a piece, get distracted and start notes on another topic, and wind up having multiple drafts I come back to as my mood suits me until I feel they are good enough to publish.

However, I also get discouraged during this process because somehow I feel like either there will never be an end to the topics that need covered, or that I won’t get through to the people who don’t accept expert evidence or reasoned arguments — and trust me, that’s more common than you think.

I’ve become very interested in the psychology of believing things without evidence, particularly as it relates to medicine and holistic healing. An interesting article in the November/ December 2014 issue of Skeptical Inquirer titled “Remembrance of Apocalypse Past” looked at the psychological mechanisms instilled by believers of the 2012 Mayan apocalypse, and how those mechanisms caused those believers to maintain their belief, even after the apocalyptic date passed and nothing happened.

According to the authors, four factors come into play when debunked beliefs continue: cognitive dissonance, sub-clinical dissociative tendencies; gestalt processing, and conceptual availability. As a psychological lay-person, these four factors are a bit difficult to wrap my brain around, however, I want to explore how I see each of them, as they are described in the article, in my everyday musings in the world of pseudoscientific health and wellness.

Cognitive Dissonance. This happens when there are inconsistencies between ideologies and fact which create discomfort for the person holding these ideologies. Usually, the more invested a person is in a belief, whether financially, emotionally, as an attitude or lifestyle, the higher the value they will place on it, and the more they will fight conflicting information.

on your side

This rejection of contrary evidence is so strongly demonstrated among those who have latched onto natural medicine because the appeal of simple, safe, panacea cures is so much higher than the complex, imperfect and often limiting existence of science-based treatments. To point out the flaws or hypocrisies of the belief in question creates so much discord that the person will cope by finding any mental escape back into a place of harmony. S/he will attempt to rationalize how the two conflicting bits of information can coexist, and consequently reinforce the faulty belief. This is how conspiracy theories are born.

Dissociative Tendencies. The authors define this type of dissociation differently from how it is used in psychiatry. Rather, subclincal dissociative tendencies are described as a rather normal habit of seeing the world in a slightly altered perception from reality. One common form of this would be to assume supernatural explanations for mundane abnormalities. If the lights begin flickering suddenly, a dissociative tendency would make the person experiencing it more likely to think they saw a ghost, when the more plausible explanation is due to electrical interruptions.

With credulous treatments, a person puts too much trust in their personal experience rather than objective data. As Dr. Steven Novella, a famed neurologist and skeptic puts it, “When someone looks at me and earnestly says, ‘I know what I saw,’ I am fond of saying, ‘No you don’t. You have a distorted and constructed memory of a distorted and constructed perception, both of which are subservient to whatever narrative your brain is operating under.'”

While that may sound arrogant, the research to back up that statement, particularly in regards to eye-witness statements is hard to argue. The same is true for people who have self-experimented with some natural remedy. They may preface their testimony with “I was skeptical at first…” but they will swear the results they experienced were not only real, but directly caused by the remedy they used and no other variable. This is why anecdotal evidence is not reliable at all.

Gestalt Processing. A type of human information processing, this factor seems to work alongside dissociative tendencies. It is a theory that basically states that, unlike feature-intensive processing, gestalt resides at the other end of the scale, where very little critical thought is given to a concept and thus said concept is accepted as a whole. This tends to happen more with ideas that are not very familiar to us.

For example, while we all eat food and most can describe the basic Magic School Bus version of how digestion works, very few of us are really educated on all the biochemical reactions that take place on microscopic levels throughout our various organs and systems. So when somebody proposes that X food is bad because of Y ingredient which is also used in Z industrial manufacturing process, it is easy to credulously entertain a conspiracy theory of corporate plans of poisoning in the name of profit. While that is a big leap to make, and fails to explain precisely how said ingredient allegedly causes health problems, (at what dose, for how long, at what exposure rate etc.,) not to mention why a business or government would have any motive to kill its customers/ citizens (including their own families), it is gestalt processing that allows people to believe that sort of information.

Similarly, when an idea pervades that a plant, which has a history of being used in religious ceremony and in folk medicine for ages has had positive preliminary findings for very specific types of cancer cells, it is those dissociative personalities aided by gestalt thinking who allow that concept to jump to Miracle Plant Cures Cancer! As the exciting news spreads through social media, news outlets, office gossip and dinner table banter, and finally legislative campaigns, we get the final factor contributing to pseudoscientific belief: conceptual availability.

Conceptual Availability. This, to me, is arguably one of the most important ways a simple belief becomes unquestionable dogma. The more attention is given to a claim, the more likely those with reduced feature-intensive processing would be influenced by it. Take for example the vaccine-autism link myth. Though it has been long debunked, decimated in the most thorough way, it is still talked about so often, there are still many parents who think there must be something to it. And while the availability heuristic could probably work both ways, the difference is that scientific beliefs actually have evidence to back them, where as pseudoscience has only gut feelings.

The influences of conceptual availability alongside uncritical gestalt processing, which occurs most often in people with dissociative tendencies who have a lot to lose if they’re wrong are, according to the authors of the Skeptical Inquirer piece, implicit to the continued belief of irrational and pseudoscientific ideologies. Again, I’m not a psychologist, but from all my experience ranging from being a former believer in certain areas of quackery, to engaging with current steadfast believers, to researching and debunking credulous claims, I can easily accept that this is true. However, there’s one last factor that I would add in contribution to this list. Dunning-Kruger.

The Dunning-Kruger Effect. Named after the Cornell University researchers who first described this cognitive bias, the Dunning-Kruger effect is basically a miscalibration of people’s understanding of their place among others. In other words, the unskilled demonstrate illusory superiority, overestimating their knowledge of a skill or trade while the highly skilled tend to underestimate the value of their worth when compared to others. It’s a classic dichotomy of arrogance and humility.

I suspect that the Dunning-Kruger effect works into the psychology of believers just as much as the four factors mentioned above. When you consider the major personalities and leaders of the natural movement, almost none of them have advanced degrees in the areas they are preaching about. When their amateur-sourced opinions are confronted with professional criticism or educated debate, they would rather cry defamation and persecution, deflect with broad ad hominem attacks and unsubstantiated accusations, censor opposing information and questions that could lead to the dissonance they so readily avoid (afterall, they do usually have major financial and emotional commitments to protect).

What irony that they and their followers, whose entire lives are formed around a logical fallacy (the appeal to nature) should declare superiority to those whose life’s work is devoted to systematically understanding the natural world and presenting unbiased information in hopes of progressing the collective knowledge of humankind at this particular moment in history.

The question then becomes, what can be done to counter these influences? The authors of the Skeptical Inquirer article attempt a response to this by saying, “The answer is obvious: We need better education in science, in feature-intensive consideration of facts, and in the ability to analyze paranormal claims in terms of their specific details. For human beings, the world consists of a blend of objective reality and our subjective interpretations of that reality; it is that subjective interpretation that is the most subject to the salutary influence of education.”

I don’t know how I feel about this though. To me, it sounds like a very vague and half-assed conclusion, as if they were reaching their word count limit and needed to wrap it up quickly. Of course education and critical thinking need to be bolstered, especially when it comes to scientific literacy, but if it were that simple to influence the subjective interpretation of objective reality, we would not still be combating pseudoscience today, when scientific advancements have meant a wealth of information that we know we know.

With little expertise on this, I’m not certain in what ways we can change how a person, and extensively a culture, thinks. Just broadcasting the facts can’t change one’s mind if facts were not part of the belief’s original makeup. I’m learning more and more, it’s not what you say, but how you say it. Is there even a single technique that is successful? I suspect that it is an existential question that I will probably continue to grapple with as long as I write this blog.

Sharps, Matthew J., Liao, Schuyler W., Herrera, Megan R., “Remembrance of Apocalypse Past: The Psychology of True Believers When Nothing Happens.” Skeptical Inquirer. Vol. 38, Issue 6. November/December 2014

7 Excuses for Not Getting the Flu Shot (and why they’re bunk)

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ventilatorIt has come to my attention recently that there are people with CF, or CF in their family who are anti-vaccination. This baffles me. It’s the beginning of fall right now in the northern hemisphere, and pharmacies are starting to advertise the Flu shot that is available to customers. There’s always been confusion in the general (healthy) public about getting the flu shot, and with the disinformation spread around social media, the confusion is increasing. So I suppose I shouldn’t be surprised to read that a few people in the CF community have been fleeced into believing various anti-flu shot related discourse.

Let’s start with a few statistics. Last year in America, there were over 100 deaths of children with the flu. 90% of those children were unvaccinated. 40% were healthy and with no previous health complications.[1] The CDC reports that in the last two flu seasons, only around half of children were vaccinated against flu. This is appalling. It’s not just children who are at risk either, last year’s flu hit adults pretty hard too, overwhelming many clinics and hospitals with ‘Influenza Like Illness’ and killing an undocumented number of adults, both in healthy and high-risk groups.

So why do people still refuse to get flu shots? Especially if they are, or are living with someone who is, in a high risk category? This is the list I’ve compiled of the most frequently mentioned excuses for not getting immunized, and my answer to them. It hardly covers everything I’ve ever heard, but it touches the most important points:

I used to get the Flu vaccine every year, but I still got Flu anyway.  The flu vaccine is not 100% effective, no vaccine is, but it does protect the vast majority of the population, and reduces your risk significantly. The flu shot is not a live virus, so it cannot give you the flu, only a mild immune reaction from the shot. The nasal spray is live but weakened, and is not recommended for anybody who lives with someone, or is in a high risk group. The flu shot takes about 2 weeks to give full protection, so if you got the flu after getting a flu shot, you were already infected and it took some time to manifest symptoms.

Finally, a cold is not the flu. Too many people mistake feeling severe cold virus symptoms as the flu. If you have CF, the flu will probably knock you on your ass, land you in the hospital, and make you think you’re dying. This is not preferable compared to feeling miserable and missing 3 days of work. Now, if you are one of the very rare cases who got a flu shot, and still got actual flu, it’s because you got a strain that was not covered in the current year’s inoculation, or the vaccine protected you from a more severe course of illness.

I never get the flu vaccine, and I never get sick. Well haven’t you been lucky! But you do realize those two statements have no causal relationship, right? If you get sick this year, it will be because you didn’t get the vaccine. More importantly, if when someone else gets sick this year, it could be because you didn’t get the vaccine.

The flu vaccine is full of toxins, and chemicals that are classified as carcinogenic by the FDA. Vaccines often contain ingredients that can sound scary, or have a bad reputation. The first thing to remember is, the dose makes the poison; every chemical can be lethal, even water. The dosing in a vaccine is very precise, and specified as such after lengthy and high quality examination which concluded them to be well below the confines of what is considered safe levels. Secondly, these ingredients are not just thrown in to poison an unsuspecting public. They have a purpose, and are necessary for the efficacy and preservation of the vaccine.

The ingredients typically decried in the flu vaccine are thimerosal and formaldehyde. Thimerosal has mostly been removed from all vaccines, period, but still remains used as a preservative in multi-dose flu vaccines, which is not what most people get anyway. The reason people think it’s scary is because it breaks down to ethylmercury, which has the word mercury in it, so it must be a poison.  Factually, ethylmercury is a larger, safer molecule than the accumulative neurotoxin methylmercury, and is eliminated by the body in just a week. See what a difference one letter can make in chemistry?

Formaldehyde gets a bad rap because it preserves body parts in glass jars in creepy science labs. Reality is that formaldehyde is created in our bodies as a byproduct of our metabolism, as it helps form amino acids. In a typical flu vaccine, there is between 5-100 µg (micrograms) of formaldehyde. To give perspective, a single pear contains 39,000-60,000µg of formaldehyde. [2]

Other scary sounding chemicals like Triton X-100, and elements off the periodic table which have been used in detergents or antifreeze or insert-skull-and-crossbones-product here make people feel uneasy about what the ingredients they’re being injected with are. However, as with all things in chemistry, a component of a poison, is not the poison itself, and everything in the flu vaccine has been studied thoroughly, and found to be safe in that dose.

Natural immunity is better than artificial immunity. There’s that word again. Natural. Followed by better.  For some reason anything artificial is considered bad when, in actuality, it is not. In the case of immunity, the very same antibodies are created whether you were exposed to the pathogen through a shot, or survived a harrowing illness filled with fevers, breathlessness, pain, and mucus. Also something to consider, when you are sick with the flu virus, your immune system is lowered because of the severity of what it’s fighting. This leaves you vulnerable to pneumococcal pathogens and other diseases. By getting your immunity the “artificial” way, you keep your immune system armed for the other viruses and bacteria that you’re prepared for.

Making a new vaccine each year only makes the flu virus stronger. Simply put, no, the flu doesn’t become more dangerous as new vaccines are created. The science behind viral evolution is complicated, and not something I am qualified to explain, however, it’s not the vaccines that are causing genetic changes each year within the influenza genome. It is true that the flu is constantly changing, as its genome replicates and rearranges segments. There are two types of change, antigenic drift and antigenic shift. Basically drift amounts to small changes that are phylogenetically similar, and can all be covered by an umbrella of what is called “cross-protection” within the immune system. However, once those changes have accumulated enough to become unrecognizable to the antibodies in your system, there comes a need to update the vaccination to appropriately recognize the new changes.

In contrast, an antigenic shift is when there is a sudden abrupt change in the virus, such as when an animal subtype introduces different proteins into the genome and humans have no immunity to it yet because it is not even remotely similar to anything we’ve fought before. This is what happened with the severe H1N1 flu virus, or swine flu. Shift happens only occasionally, and is not a sign of the virus becoming stronger. Influenza type A can be subject to both antigenic drift and shift, where as Influenza type B will only undergo antigenic drift. [3]

Vaccinations are just Big Pharma’s way to bring in guaranteed annual income. The faceless conglomerate “Big Pharma” admittedly has some shady practices that they profit from. That doesn’t mean that what they’re selling doesn’t work. In the case of vaccines, they make very little profit compared to the billions that they would make in hospitalizations and clinic visits if everyone were to not get vaccinated and the flu spread like wildfire across the population. So what if they make money. They’re a business. They also keep millions of people alive with products that have been rigorously tested for safety and efficacy before hitting the market, an upfront cost which needs to be recouped and marked up if they are going to be able to invest anything into future products.

I can avoid the flu with a healthy diet and regular hand-washing.  While those two things are important, and should be done, they can’t protect you the way a vaccine can. The flu doesn’t care how good of nutrition you consume, or how clean you keep your hands and home. It is an airborne virus that can infect anybody, healthy or not. Additionally, it can kill anybody, healthy or not.

Vaccination is not just done to protect the individual, it is to protect the public. Herd immunity is a real thing, and the people who cannot vaccinate, say because they have had a transplant, or are undergoing chemotherapy, or are a tiny baby, all depend on the rest of us to keep them from catching that virus that could kill them. Most CF patients have experienced lung disease to a point where they know how hard it is to breathe and live with pain, exhaustion, and congestion. Imagine how much worse it would be with a serious infection like the flu.

The major point I want to convey about the seasonal flu vaccine is this: You exist in a world with other people. As such, it would be selfish and irresponsible to neglect vaccination when you are healthy enough to get one. You may be comfortable with the idea that you can handle the flu, but how well will you carry the knowledge that whatever anecdote or paranoid myth that prevented you from getting a flu shot was the reason another person got sick or died.

AUTHOR NOTE:

I realize that some people reading this will dig in their heels over this information. I can’t help them, no amount of facts can change their belief, and unfortunately this post may prove useless in reaching the people who really need to be reached. If you believe that the CDC, FDA, and Big Pharma are out to get you; to kill you, profit off you, whatever illogical plot you have conjured up in your head, then you are too far gone to be reached. I cite government sources because they are factual, accurate, and based in science. I get paid nothing for this, I just want to live in a world where people don’t die from preventable illness.

[1] http://www.cdc.gov/flu/spotlights/children-flu-deaths.htm

[2] http://www.cfs.gov.hk/english/whatsnew/whatsnew_fa/files/formaldehyde.pdf

[3] http://www.cdc.gov/flu/about/viruses/change.htm

Why I am Frustrated with ‘Western Medicine’

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There’s something in the air. It’s penetrating our radio and satellite waves, our social media, higher education programs and is influencing our purchasing demands, retail property development, and even our museum gift shops. I’m not speaking of a chemtrail conspiracy, I’m talking about the triumphant invasion of Naturopathy.

Naturopathy, as defined by Google, is a system of alternative medicine based on the theory that diseases can be successfully treated or prevented without the use of drugs, by techniques such as control of diet, exercise, and massage. According to the Association of Accredited Naturopathic Medical Colleges’(AANMC) website, “The number of NDs practicing has tripled over the past 10 years, no doubt in response to the growing patient interest […]. As it grows, the ND profession continues to spark the interest of those dissatisfied with conventional medicine.”[1] A 2009 National Institutes of Health (NIH) report showed that 38% of adults in America have used some form of Complementary and Alternative Medicine, spending a total of $33.9 billion. [2]

This paradigm shift has come about largely due to a small number of scientifically illiterate believers with a large amount of political power and an advantage in public relations. Iowa senator Tom Harkin, a main figure on the NIH appropriations committee and defender of woo, slipped a line in the 1992 appropriations bill that created what’s now called the Office of Alternative Medicine and $1M in funding.

Fast forward 12 years and you have an OAM budget 50 times what it was when it was first created and the establishment of the National Center for Complementary and Alternative Medicine (NCCAM). Though initially the director of the OAM defended that there was not much evidence to support the various therapies being studied, he eventually buckled under Harkin’s pressure to support pseudoscience and left the position. Harkin had him replaced with more, say, flexible, candidates. [3]

NCCAM since its inception has funded over $120 million per year in dubious studies of CAM therapies and practitioner training. It has failed to produce any reliable evidence of efficacy in any of its studies to date. [4] Its mission doesn’t care about that though; the Center continues to promote CAM therapies with the façade of government backed credibility.

So what’s this got to do with Western Medicine? (A label I detest, by the way). To be sure, I’m not blaming evidence-based doctors for the existence of naturopathy. I once read that that would be like blaming astronomers for the existence of astrology, and I agree. There will always be quacks, and hucksters praying on the gullible, some well-meaning healers who believe their own woo, and some just looking for a fast way to get your money.

As frustrating as it is that charlatans still exist in the 21st century, what frustrates me more is how easily they have crept into the “mainstream.” For so long, the general attitude of scientists has been to not lend credence to ridiculous claims by debating them publically. While the basic premise of that sentiment is noble and to be applauded, it has served little good to deflate the various natural movements that continue to grow. Scientists may not like it, but people are listening to the snake oil pushers. Influential people; people who write legislation, people who have popular afternoon talk shows, people who edit major journalistic outlets, and people with teaching degrees.

Separating two sides of the same coin: Medicine is Medicine.

My first point of contention would be the very label itself. By allowing ourselves to separate naturopathy from “allopathy” (a made-up term used by naturopathic flag bearers to delineate themselves from the “other”), we have already falsely isolated medicine into two equal subtypes. “Western Medicine” is the term used to describe medicine that is created, refined, and regulated in sterile laboratories, and prescribed by people in white coats, found to be effective over the last century or two.  “Alternative (Eastern, Complementary, Naturopathic) Medicine” is used to describe medicine long used, but collectively forgotten about in recent times; things found in Nature and available to The People, and remedies that are maintenance focused, anticipatory, and do not bear many harmful side-effects. Can you see already why the visual of the latter is much more romantic and utopian?

Aside from the blatant fallacies of appealing to nature, and ancient wisdom, Alternative Medicine also has hijacked the idea that the preventative therapy is unique to its sphere of practice. There’s a marketing problem within Science-Based, and Evidence-Based Medicine, namely that it is not conveyed enough that “Western Medicine” is all-encompassing, as long as the treatment has been shown to succeed. After all, you know what they call Alternative Medicine that works? Medicine.

Focusing on patient turn-around instead of patient care.Waiting-at-doctors-office

Expanding on the thought that science-based medicine isn’t communicating well with the public, I’d like to address the concern among many patients that the system is just too impersonal. I, like most with Cystic Fibrosis, spend a lot of time as both an inpatient and outpatient in conventional medicine. I love my clinic and everyone on my team, and I believe they do their best to listen to, cooperate with, and serve me as an individual patient; but there is without a doubt a very dehumanizing protocol that is followed throughout the world of industrialized healthcare.

It’s hard not to feel like a cog when you go from this station to that line, to this waiting room, to this booth, having your barcode scanned with each procedure, check-in, and medicinal administration. As a “professional patient” who’s been doing this all my life, I’m quite used to it, and rarely even give it a second thought. However, some are accustomed to being treated like the delicate snowflake they are, and I can only imagine how turned off I’d be if I were a relatively healthy individual with rare to moderate need to see a physician being thrown into that fast paced, complex environment that is institutionalized medicine. It really is no wonder so many people envision doctors to be cold, uncaring, money-grabbing, conspirators set on keeping people sick.

The CAM industry knows this and has jumped on it as their main promotional lure. Naturopaths listen, they address the whole person, not just physical symptoms; they get to know you, your personal history, and your family’s lifestyle. It all sounds great, and by no means am I implying this shouldn’t be happening in a MD’s office setting. After all, you’re putting your health in their hands, they should know everything. But I don’t think people understand that, generally speaking, good doctors, really do ascertain all the information they need from those brief minutes they’re in the room treating you.

Most of what naturopaths do when they set up hour long personalized appointments, is appeasing the patient’s need to talk, develop a relationship, and let them feel as though they are getting a more thorough health consultation than they’d receive in a clinic. Consequently, science-based doctors are ever more being boxed into evil, tasteless, unsatisfying options for healthcare.

Granted, there are horrible doctors, pill pushers with poor bedside manner, zero humility, and often poor decision making. But they don’t represent the vast majority of doctors. I feel that many doctors, being employees of a hospital are sometimes practicing with their hands tied behind their back, figuratively speaking. They care, but have to follow the industry rules for productivity.

Unfortunately, scientists and doctors, with their methodological minds, are notoriously lacking in charisma and displays of empathy, traits in which pseudoscientists excel. If only they had a PR team as good as the CAM pushers to once again appeal to the emotions of their patients and regain their trust.

Opening the door to Alternative Medicine

Many hospitals around the nation, sympathetic to this problem, have developed departments of Integrated Medicine. Their specialties range from massage and chiropractic to reiki and ayurveda. While I view this as more of a money grab than anything else, it’s especially irritating that in essence, the message these hospitals are sending are that these are legitimate forms of treatment accepted by mainstream science as we create a culture that celebrates well-rounded and open-minded experience.

This hurts the fundamental mission of offering the best available treatment to patients whether it is old, new, expensive or cheap. The healthcare industries attempt at showing how progressive and accepting they can be, has led to the degradation of quality information, and what I like to call the death of expertise.

Not cracking down on fraud and bad practice has soiled the reputation of good doctors.

I recently shared an article on my Facebook page that pointed out another fatal flaw that is perpetuating quackery in disguise of legitimate professionalism. To quote an excerpt: “Organized Medicine has an interest in protecting physicians as a profession. They want to maintain the prestige, trust, and income doctors have historically received. In order to protect the profession as a whole, organized medicine sometimes protect individual doctors, even if they are not acting in the best interest of patients. The AMA fears undermining Dr. Oz could undermine the overall trust in doctors.”[5]

Therein lies the problem with keeping quiet about people using their title of doctor as a form of exploiting the trust of people in order to sell supplements or alternative therapy; they have effectively created a world where anyone who claims to be a doctor, can with enough charisma, usurp the trust people would give to their personal physician, even when the evidence doesn’t hold up against scientific rigor.

This even goes further than just rogue MD’s or imposturous ND’s. With the advent of the internet, anyone with Google and a couple hours to spare can now purport to call themselves an expert, and be heard. To quote Isaac Asimov, “The strain of anti-intellectualism has been a constant thread winding its way through our political and cultural life, nurtured by the false notion that democracy means that ‘my ignorance is just as good as your knowledge.”[6]

The main reason that this is a problem, is not because information is more readily available, it’s that it is largely undisputed by true experts. Measured response is greater than how a treatment makes a patient feel. However, math anxiety is common in many people, and especially the layperson who hasn’t been trained to analyze and interpret complicated datasets.

Unfortunately for evidence-based medicine, this makes people trust statistics less than sensational reporting. It’s time for doctors to take back their prestige as experts that earned them that trust in the first place.

Shrugging off the implication of people seeking alternative medicine.

Regrettably, in many academic circles, even those that were trained strictly in science-based medicine, views on naturopaths or holistic healing are rather lax. Dr. Valerie Jones coined the term “shruggies”[7] for this particular class of doctors, meaning that upon hearing of some quack treatment being used, they simply shrug and ignore it, as they feel it is not really that big of a deal, just some harmless misinformation; certainly it’s not a threat to science based medicine, right?

Perhaps they feel like it’s not their place to get involved, or that they are too busy, too esteemed to waste effort fighting back against it. This attitude, though, has immobilized a lot of the would-be activists to prevent naturopathy from getting hold in the mainstream. Furthermore, this approach has essentially given permission for it to continue.

Systemic dysfunction at the scholarly level.

Additionally, it seems that there are a lot of issues within academia that have eroded the reputation of science-based medicine. One major one, as presented in detail by Dr. Ben Goldacre, is the sort of unfussy regulations that have to do with the registration of studies. You see, there is a great imbalance between positive and negative studies, the emphasis weighted on the former. A study is much more likely to be published if it showed a positive result. After all, why show honest, boring results when you can show exciting results (albeit with slightly fuzzy data)?

Realistically, many more trials are done with negative results, but don’t make the publishing cut. As a consequence, doctors looking for information on a certain drug may be misled into believing it is more successful than it actually is.[8] By changing the rules so that all trials must be registered before beginning, and published in an open-access journal, like PLOS-ONE, it would be easier for doctors to research a drug and glean a more accurate picture of its efficacy.

The biggest advantage this would yield (though maybe not for drug manufacturers) is that unnecessary prescribing of medicines would be squelched, and thus fewer instances of injury or death caused by or related to pharmaceutical drugs.

Similarly, from what I understand of academia today, the pressure to publish is overwhelming. Academic journals are still private businesses, and like a newspaper, they choose what gets printed. You’re really nobody until you’ve had your name printed as an author on a new breakthrough article. If a recent graduate leaves medical school without this minimum accomplishment on his or her resume, it can affect everything from your career eligibility to your salary to your reputation.

Unfortunately this forces scientists to behave like journalists, sometimes omitting information or trying to make data fit into their hypothesis.[9] Also, established scientists are often pressured to keep up a certain amount of productivity as far as published research they’ve authored or contributed to. Famed physicist Peter Higgs has been quoted as saying, “I’m not productive enough for today’s scientists.”[10] Of course I have no personal experience, and I may be wrong on this point, but it seems that when there is that kind of pressure on a person’s future, desperation ensues, mistakes are made, and inevitably quality declines.

Other issues of concern are the influx of pay-to-publish journals, which can disguise themselves as legitimate sources to a person who is not as familiar with the hierarchy of reputable journals or their impact factors. While this issue in and of itself is not the fault of academic medicine (just capitalism making room for the quick-buck entrepreneur), there still seems to be a real lack of oversight in regards to cracking down on misinformation.

Even within the sphere of the most highly rated journals, junk science has been seeping through unchecked. A couple of MIT students, trying to demonstrate this, designed a program that generates research papers comprised entirely of gibberish from a computer ‘bot’ which they then submitted as a hoax to test the review process. The studies were accepted in 30 different journals and conferences despite claims of oversight. Even their fake author became a widely cited name in academia.[11] So, if it is so easy to have bogus papers accepted, it begs the question, are these reputable journals still a trustworthy source for refuting pseudoscience?

When sound methodology becomes less important than interest, quality declines and so does the public trust. Without the public trust, alternatives are there waiting to exploit the opportunity for their turn at the top. Shouldn’t the top be reserved only for that which has the most merit? Until recently, that was ‘Western Medicine’, but over the last few decades, it seems to be slipping from its post, and that is, most of all, why I’m frustrated.

 

 

[1]  http://www.aanmc.org/careers/becoming-a-doctor/growth-of-the-profession.php

[2]  http://nccam.nih.gov/news/2009/073009.htm

[3]  http://www.skepdic.com/NCCAM.html

[4] http://www.sciencebasedmedicine.org/the-national-center-for-complementary-and-alternative-medicine-nccam-your-tax-dollars-hard-at-work/

[5] http://www.vox.com/2014/7/12/5891451/meet-the-medical-student-who-wants-to-bring-down-dr-oz-quackery

[6] http://aphelis.net/cult-ignorance-isaac-asimov-1980/

[7] http://www.sciencebasedmedicine.org/a-shruggie-awakening/

[8] https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe

[9] http://theconversation.com/when-exciting-trumps-honest-traditional-academic-journals-encourage-bad-science-29804

[10] http://www.theguardian.com/science/2013/dec/06/peter-higgs-boson-academic-system

[11] http://www.ibtimes.com/fake-research-papers-how-did-more-120-gibberish-computer-generated-studies-get-published-1558725

Essential Oils: long on history, short on evidence

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eolavenderI’ve been meaning to write about essential oils for a while, but it’s a very large topic, and there are several specific oils that are frequently mentioned in the treatment of Cystic Fibrosis that I’d like to touch upon in the future. This post is intended to be more of a primer, covering the basic information one should know if they have used or are considering using essential oils for treatment.

Essential oils, if you are not familiar, are the bottled “essence” of a plant, generally believed to hold medicinal properties. Historically, they have been a part of traditional healers’ apothecaries dating back to biblical days in the Fertile Crescent, and likely came into use to combat the odor of infected wounds and corpses, before noting  in case records that different herbs seemed to provide various different curative agents[1].  Today, they are quite popular among the natural health crowd, and especially with those living with chronic illness, who tend to be more susceptible to appeals to nature and antiquity.

There are dozens of forums, websites, blogs, and YouTube videos that all tout the benefits of using essential oils and aromatherapy in the treatment of Cystic Fibrosis. But as I peruse them, they all basically say the same thing in the same vague language without really offering any supporting evidence of their claims. I suspect this usually has to do with sales tactics above all else in addition to confined source material.

Many (not all) of those who claim to be in-the-know are commissioned sales associates; they buy into the program, repeat the script, copy and paste the recommendations, get their own oils at wholesale prices, and thereby sound like an authority. I guess because it’s said often in a variety of social networks, people think it must be true, or else why would so many people keep talking about them. Also word-of-mouth is the strongest form of endorsement when people weigh decisions, even when scientific evidence is blatantly lacking or made up.

The thing about essential oils that I most want to get across to people is that, yes, they can have medicinal properties; they can have actual measured benefits, and actual measured side effects, and actual drug interactions. Essential oils are concentrated liquids containing volatile compounds from plants.  What they are and what they do depends on what plant they’ve come from (and sometimes what part of the plant). Pretty much all of modern medicine stemmed from plants and herbs which were studied, isolated, and chemically synthesized. However, that does not mean that the essence of a plant is equal to its pharmaceutical counterpart. Nor does it mean that they are safer because they are sourced naturally or organically.

Essential oils are considered herbal therapy by the FDA, which means they are not required to prove safety or efficacy before selling them. There is also no requirement to disclose ingredients, or pass regular inspections for contaminations. It is wrong to assume that one brand of essential oil contains the same quality or same potency of active ingredient as another.[2] Some forms of essential oils are what is known as true oils; they are pure, concentrated distillations of the plant. Most others are diluted in a carrier oil, usually vegetable based. Either way, you need to know what you’re getting, and that there could be variations in quality from batch to batch, but without a system of checks and balances to assure uniformity that can be a challenge.

Throughout the progression of the practice of treating disease, chemists started testing many of the home remedies and apothecary potions used in traditional folk healing. Some they found actual properties that could qualitatively be measured for therapeutic use. The biggest problem was that the bioavailability, that is how much of the medicinal compound is actually found in the plant, varies from plant to plant, harvest to harvest, and with climate and soil type.[3] While one batch of oregano oil could carry high levels of carvacol, the next batch might be sort of a dud comparatively.

It wasn’t until pharmacognosists were able to isolate the biocompound and regulate a dosage (usually through lab synthesis of the same chemical), that they could really begin understanding how a regular dose is administered, absorbed, how it is eliminated, whether it is transformed in the gastrointestinal tract, if it causes side effects, etc.

Essential oils are often “prescribed” in many ways. Some direct the patient to take orally, some topically administered, some to diffuse, burn, cook with, and my personal favorite: rubbing on the soles of the feet (scientifically proven to give you, um…slippery feet!). In most cases, these directions haven’t really been studied for true efficacy and safety. We know that certain types of citrus based oils also cause photosensitization- making the user hyper-prone to deep sunburn, yet some books, guides, and consultants may still recommend them for use on the skin.[4]  In fact, many popular brands of essential oils will cause severe skin reactions because of the potency of the oil.

Topical oils should be diluted to a maximum of 5%. People have received what is similar to chemical burns and rashes after being told to rub pure peppermint oil on their skin by a sales consultant.[5] Similarly, some oils are too concentrated to be taken orally. They can cause severe stomach upset, and have been known to erode the tissue in the esophagus.[6] In one case described to be me by a CF specialist, a patient was treated for renal failure after self treating with oregano oil oral capsules.

nebulizerMany people with CF have turned to nebulizing essential oils, after being told that it has shown to kill pseudomonas in in-vitro studies. I believe this is motivated out of 3 things: desperation, self advocacy or mistrust of doctors’ knowledge, and a sense of false trust that because it came from a plant, it cannot possibly hurt. Unfortunately, this is a very dangerous thing to do. According to specialists at a top CF clinic, the risk of lipoid pneumonia is very high.

The lungs do not have any mechanism to clear oil from the alveoli.[7] Although pure essential oils are not true oils, and are fat-soluble, their hydrophobic nature can still be problematic for the respiratory system to eliminate. Additionally, since most essential oils are not pure, but are diluted in a carrier oil, usually vegetable oil, this provides a manner to introduce lipids into the lungs.  Basically what happens is the lipids from the oil builds up and coats the tissue in the lungs and prevents proper oxygenation and air/ sputum movement. Oil in the bronchi is hard to clear through the normal actions of the cilia, and can make their way to the alveoli in a matter of minutes. Fluid and infection can increase as a result, which can be deadly, as well as contribute to fibrosis (scarring).[8]

Speaking to two pulmonologists, each who have had patients self-treat with nebulized essential oil, the results of the lipoid pneumonia can cause devastating damage.  At least one patient permanently lost approximately 15% of lung function, and that was after a lengthy recovery in ICU. Another patient, whose FEV1 was close to being listed for transplant, fell sick and died of complications from lipoid pneumonia.  One doctor reported that a colleague had a patient whose lung function dropped from a stable mid-range FEV1 to needing an emergency transplant within a matter of weeks.

These cases are truly tragic, but even if a person were able to nebulize oils regularly and escape serious consequence, there is absolutely no evidence that it is helpful to add to your treatment. As I’ve said many times before, results in a dish are not the same as results in the human body. The studies rarely go on to follow –up animal studies, and never to human studies. As it turns out, it’s pretty easy to kill pseudomonas on a plate. Lots of things can do it. Peppermint can do it, thyme can do it. Stomach acid can do it, and so can bleach. None of these things are advised to be introduced to the pulmonary environment.

Essential oils for cystic fibrosis most often include oregano, peppermint, thyme, clove, and cinnamon. Various companies and sales consultants sometimes add in others, like frankincense and melaleuca, but the aforementioned group are the ones that have actually been studied in terms of their effects on  gram negative P.aeruginosa, K.pneumoniae, S. maltophilia and gram positive S. aureus pathogens, all of which are commonly present in the cultures of CF lungs.  All of the studies are in vitro studies, and all demonstrate the ability to kill the pathogen. Only one, however, compares the antibiotic property of the plant essence to an established antibiotic. This is the somewhat famous study that looked at peppermint oil against tetracycline that recently generated a response from the CFF.

Though the study showed that peppermint oil fared well in this test, tetracycline is a somewhat weak type of antibiotic. It’s mostly used for people with acne or Chlamydia, and is frequently used in veterinary and agricultural settings, leading to modern day resistant bacteria.[9] This is a major flaw with the use of essential oils as antibiotic treatment. They are generally weak compared to Tobramycin, Aztreonam and other antibiotics typically used in CF, and therefore are easy to become resistant to. Pseudomonas is a tough bug; the last thing you want is for it to get its slimy little hands on a bullet-proof jacket, and you having to pull out the big artillery to kill it, leaving collateral damage in your wake.  As long as we’re using the weapons analogy, for people who are prone to serious exacerbations frequently, using essential oils in any way is akin to firing BBs at a freight train-it’s not going to slow it down.

Another thing to consider is the age-old problem in researching CF treatments: how to break through the sticky biofilm that envelops the bacterial communities and protects them from the full force of antibiotic medicine and the body’s own immune response. A few of the studies did take this into consideration, and some even noted that in a few cases, the test oil was able to cut through the film in non-toxic concentrations[10] (meaning if you were to scale it up to a human body, you wouldn’t have to ingest outrageous or near-lethal amounts of essential oils to get the same effect). However, I stress that these were only test-tube studies, and I haven’t read anything about researchers knowing the precise mechanism of action or biochemical pathway oils may use to reach the microbes through the biofilm-growing mucoid, nor whether their safety in regards to healthy respiratory cells is assured.

In essence (if you’ll excuse the pun), information on plant essential oils used as medicine in the body is lacking. What we do know is mainly based on pre-medical herbalism, which may have gotten some of the basic concepts right, but doesn’t always the pass the test of scientific rigor. Limited testing has been done, some showing definite promise, but no clinical trials have taken place, and until researchers can be confident of its potential, they are unlikely to take place. The empirical evidence we do have, shows that some methods for administering essential oils, despite brand recommendations, can be harmful, even fatal.

Ultimately the chemical compound contained within each essential oil needs to be treated as precisely as any other in current pharmaceutical use, meaning there is no catch-all, cure-all element to these forms of treatment and they need to be given the same level of research and risk assessment we give to other medicines. Generally speaking, essential oils are just not that far along in qualitative studies, and recommendation for their use as an effective CF treatment or preventative is premature.

 

[1] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032645/

[2] http://www.takingcharge.csh.umn.edu/explore-healing-practices/aromatherapy/what-does-research-say-about-essential-oils

[3] Abdelmajeed, Nadia et al., “Review Article: The effect of environmental stress on qualitative and quantitative essential oil from aromatic and medicinal plants”. Archives des Sciences. Vol. 66, No.4; April 2013

[4] http://www.takingcharge.csh.umn.edu/explore-healing-practices/aromatherapy/are-essential-oils-safe

[5] http://www.granolaliving.com/2012/07/why-we-dont-offer-doterra-young-living-or-other-multi-marketing-brands-of-essential-oils/

[6] http://www.learningabouteos.com/index.php/2014/02/26/essential-oil-ingestion-and-adverse-reactions-proof/

[7] http://thorax.bmj.com/content/1/2/93.full.pdf

[8] http://www.ncbi.nlm.nih.gov/pubmed/21185165

[9] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC99026/

[10] http://cmr.asm.org/content/25/1/2.long#sec-8

Pineapple’s celebrated enzyme: Bromelain

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So, I saw a random unsourced picture on the internet, which has to true because it used some fancy science words and stuff. The claim summarized that pineapples were extremely important in natural health because they contain bromelain, an enzyme which reduces inflammation, acts as a natural antibiotic, and suppresses cough. It has apparently been used to ease digestion issues by Brazilians for centuries. Guess I better go to the store and buy some pineapples then!  Or, then again, maybe I should stop and think about this.

I did some digging as to the origin of the meme, and I came across an “article” on PreventDisease.com, a typical propaganda site (don’t forget to check out their store!) for natural health proponents. In it, the author mentions (though does not provide a link for) a 2010 study in Der Pharma Chemica (ever heard of it?), which looked at herbal remedies for mycobacterium tuberculosis.[1] I found it though.  Pineapple juice is mentioned on page 4, in a table among dozens of other herbal remedies as being useful in decreasing mucus associated with tuberculosis when combined with honey, pepper, and a dash of salt.[2] Not very convincing, and certainly not evidence of it being “5 times more effective than cough syrup,” as the ad *ahem* article claims. You may notice, this author also writes that with pineapple juice you get all the cold-fighting benefits of cough syrup without the “toxic chemicals”. Sounds like another case of, if I can’t pronounce it, it causes cancer.

bare-necessitiesBesides the fact that it is so inherently wrong to assume a meme on the internet containing health advice is true and accurate, let’s think about what this truly means for the average consumer, and specifically to CF patients. Pineapples are a dietary source of bromelain; that is true. It can be found in all parts of the pineapple, but is most prevalent in the stem. I personally don’t know anybody who eats the stems from pineapples. Regardless, even if you stuffed the whole pineapple down your throat like Baloo the bear from the Jungle Book, the concentration of bromelain is not high enough to be used as a medicine[3].  It takes a level of over 3000 mg/day of bromelain to register in a blood test[4] (spoiler: that’s a lot more than found in a pineapple). A better way would be to buy a Bromelain supplement tablet from a trusted health store.

Keep in mind, many companies lately have been busted for containing little to none of the active ingredient which they present on the label. Also, most supplement companies do not take a lot into account in terms of pharmacokinetics-that is the dose, delivery, absorbtion and elimination of a drug and specifically studying a product’s half-life, whether it’s transformed by the liver, and how changing the dose changes these effects. It’s the kind of thing that makes the difference between herbalism and pharmacognosy. Most supplement bottles will have a dosing structure on the label, but it’s important to know that those directions can range from well-studies to completely arbitrary. It is buyer beware. Currently, it’s not even clear whether bromelain can survive through the intestinal track and remain functionally intact, although an enteric coating on oral capsules may help.[5]

Secondly, let’s look at what bromelain is and what it’s used for. Bromelain is an enzyme which is able to break down the amino acids found in collagen, gelatin and other protein peptides. Collagen is the stuff that holds muscle tissue together, so essentially it can turn meat into mush. In fact, it is used for just this in the culinary world. Sprinkle a little bromelain onto a steak before cooking and voila, you’ve got a nice tender T-bone.[6] Just don’t leave it on too long because it will literally dissolve meat into baby food (It becomes ineffective once cooked).  It is also used externally in hospital settings for severe burns to peel off the dead scorched skin from the victim’s body. Bromelain, however, should not ever be rubbed into healthy tissue.

There have been mixed and contradictory studies showing that it may be effective as an anti-inflammatory when combined with other enzymes, with arthritis pain effects similar to NSAIDs like Aspirin and Tylenol.  Also that it can aid in healing after certain types of surgery because of its anti-inflammatory properties. It should be noted though that, like some other NSAIDs, it is a blood thinner, so shouldn’t be used immediately before or after surgery, especially for people who are on blood thinners, or have trouble clotting after a wound. Some studies, particularly relevant to those of us with chronic sinusitis, have shown it to be helpful with pain and swelling in the nasal passages. Although, it should be mentioned that some of these positive studies were small, or were not of the best quality.[7]

To call bromelain a natural antibiotic may be a little premature. There have been a few test tube and animal studies showing that it may be able to kill certain types of bacteria as well as viruses. However, there have been no human clinical trials that I have found to support the statement that it can be used to treat infections. As I have said before, results in a petri dish are a far cry from results in the human body. However, if it is not an antibiotic itself, it has been confirmed that it messes with them.

One of the most important bits of info one should know regarding bromelain is that it has been shown to increase the effects of antibiotics. It particularly raised the blood levels of amoxicillin and tetracycline when used in conjunction with bromelain.[8]  If you are taking antibiotics, especially in the same family as those listed above, it’s so important to tell your doctor about any bromelain you may be ingesting so as not to reach potentially dangerous levels of antibiotics in the bloodstream.

As far as the claim of suppressing a cough, I think this may be a leap from the conclusions of some positive (but not definitive) studies. Furthermore, suppressing a cough in cystic fibrosis should be done as infrequently as possible. Sure, it can be annoying and sometimes prevent you from sleeping. But coughing keeps all the junk moving so it doesn’t block up our airways inviting infection, and more importantly gets it out. According to WellPilot.com, the relationship between bromelain and cystic fibrosis is not supported by any relevant published research.[9]

When I am researching a supplement, one of my most trusted sources is Examine.com, where they compile all available research on hundreds of different compounds and commercially available supplements. Their page on bromelain included the Human Effect Matrix, which is a feature that looks at only human studies, grades them from A (best) to D (least reliable) and compiles a summary of the effectiveness of the test drug. On all the complaint categories in question, bromelain scored minor (1 out of 3 stars) effects, in only C and D quality studies, with 100% scientific consensus. This being said, it’s not an incredibly impressive treatment, but it’s not worthless either.  For the record, if I may pull a direct quote from the page: “There are many anecdotes that say bromelain supplementation will cause semen to taste like pineapple, but no studies have tested this claim.”[10] Just thought that was worth sharing. 🙂

All in all, bromelain is generally well-tolerated (some have reported nausea, vomiting, and diarrhea in conjunction with taking bromelain), and it does have some evidence to support a potential anti-inflammatory benefit, it appears that there’s no significant reason to add it to your daily regimen.  Like most natural remedies, the picture on the internet over simplifies some very complex medical issues and then offers an equally simple solution. The old adage, if it seems too good to be true, it probably is, applies here.

Of course if you like pineapples, there’s no reason to stop eating them (or carrots, fennel, wheat, and the myriad of other food items that also contain some bromelain) it is afterall, a very healthy food. Just please don’t be fooled by pretty pictures with unsourced health facts. If your first reaction is “it couldn’t hurt!” there’s a dangerous mindset here that not only shows a level of gullibility to the naturalistic fallacy, but could cause greater harm in self-experimentation (like trying to nebulize pineapple juice- please don’t do that).

[1] http://preventdisease.com/news/14/040314_Pineapple-Juice-5-Times-More-Effective-Than-Cough-Syrup.shtml

[2] http://derpharmachemica.com/vol2-iss6/DPC-2010-2-6-311-319.pdf

[3] http://umm.edu/health/medical/altmed/supplement/bromelain

[4] http://www.sciencebasedmedicine.org/systemic-enzyme-therapy/

[5] http://www.drugs.com/npp/pineapple.html

[6] http://science.howstuffworks.com/innovation/edible-innovations/pineapple-enzyme-tenderize-steak1.htm

[7]http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/herbsvitaminsandminerals/bromelain

[8] http://www.rxlist.com/bromelain-page3/supplements.htm

[9] http://wellpilot.com/conditionTreatment/12636

[10] http://examine.com/supplements/Bromelain/

Thinking…(Please Wait)

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It’s been a little over a month since I started A Breath of Reason. It was something I had been considering doing for a long time. Concerned by the sheer amount of misinformation I would read on a daily basis, I felt that there needed to be a voice of reason to at least provide evidence-backed rebuttals. When I first had the idea, it was after repeating myself yet again on a post on natural health. I figured if I was going to be typing my response over and over until my fingers grew callused, I may as well make a permanent record of it that could be shared as a link, or searched for with the right key words.

When I’d bring up my idea around other skeptics, I’d usually receive an abundance of support, but I was still unsure of myself. I’m not a scientist, what could I possibly have to say that hasn’t already been said? What’s more, I’d already lost friends to disagreements over established science, and annoyed others by pointing out problems with their sources, logical fallacies, etc. It seems as though (and this is actually backed up by research studies), the more someone hears a credible argument that goes against their pre-determined dogma, the less likely they are to change their mind. I was finding that no matter the tone I took, people would sink deeper into their flawed beliefs.

What changed my mind was two events happening nearly simultaneously; the first was that one friend, who had been previously irritated by my persistent ideological ramblings began to “see the light,” after she saw the similarities between what I advocated for, and an issue she felt passionately over. The second was the continued prodding from the skeptic community, reminding me that these things need to be said, and they need to be said often. They told me that if I specialized in writing about what I know, which is health, I could maybe make a difference in the way others think about medical science. I decided to focus on cystic fibrosis because that was a niche I felt I could carve out, and maybe educate a few patients and caregivers who have been vulnerable to lies and misinformation. As a fellow CFer, I hope that I can be trusted and unpretentious in my advice.

I wrote several posts ahead of time, before I even thought about going live with an actual website, so that I’d be able to hit the ground with feet running. When I went in for a tune up in June, I had plenty of time on my hands to bring A Breath of Reason to life. I posted a few articles, got a lot of positive response, and was generally excited to keep up a steady pace of weekly posting. But the most important thing to me when I decided to go for this, was that everything I wrote would be thoroughly researched and vetted before going live. The last thing I wanted was to be another source of false or mistaken information.

Here’s the thing though: science is complicated. The more I know, the more I realize I don’t know. Sometimes I get an idea for a topic, and start looking into it, only to find out that it’s a lot more in depth than I ever realized. To do a good job researching, it takes a lot longer than I ever expected; and sometimes I need to learn about more general topics before narrowing down to the specific topic I intended. It’s kind of like when you look up a word in the dictionary, and don’t understand the words in the definition, so you have to look up those first before coming back to your original word. Sometimes I think, well, maybe I can do a five part series on X topic, that way I can be sure to include all the multi-faceted angles and really do a good job. But no one wants to follow a five part series, some think I’m already too wordy as it is (they’re probably right).

My point of this post is to say first that I apologize for the slowdown in posts since I started. When I’m not hanging out in a hospital bed, it seems I have a lot less time to sit down and bury myself in research. An energetic  four year old who’s off for the summer, a best friend planning her wedding, and balancing all my other interests and responsibilities leaves me with very little time and energy to do the thorough job I expect of myself, and that you, my readers deserve. Secondly, I want to assure everyone that I’m still just as passionate about writing on topics of concern to CF. Please stay with me as I sort through and investigate the various claims I am to target.  And as always, if you have an idea for me, please comment or write, and I promise I’ll still hold up the highest quality of information I can find on the subject matter.

 

 

Heads I Win, Tails You Lose: The Naturopath’s Rule Book

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My son loves doing battles with his toys against me or my husband, but typical of all children his age, he will often add new clauses as he goes along to assure that his guy can’t die. Last night was no different when, during our robot fight, he quickly remembered a rule that he’d forgotten: that if a robot’s head came off, he didn’t die, but rather “grew a new one” so as to continue the fight. Oh yeah, and T-rexes can’t kill robots either.

Cute as it is, it’s obvious that these rules only come in to play if they work to his advantage, like say when I use a nearby Tyrannosaurus to obliterate his lego-bot. He’s no dummy. He knows that if the rules stay the same from the start, that it means he just lost, and that’s unacceptable. In scientific rhetoric, this is what’s called moving the goal posts. A result doesn’t come out your way, so you change the rules so that the results you did achieve can now be considered a success.

Adults and children alike exploit this tactic, sometimes as an innocent quest for feel-good wins, and sometimes for political or monetary gain. When you think about why our society implements rules, it boils down to having a level playing field for all players. In politics, in industry, and in science, this is imperative if we are to achieve ingenuous progress. After all, what is science but a set of rules to guide the process of finding truth?

Unfortunately, confirmation biases infiltrate all investigations, because our human nature is programmed to reward our intuition with affirming data. As famed physicist Richard Feynman puts it, “The first principle is that you must not fool yourself — and you are the easiest person to fool.”

Evidence-based trials are sometimes guilty of this. In fact, many people have criticized the recent Vertex Ivacator/ Lumacaftor drug combo for double F508del for scaling back their original expectations of measurable improvement so that by the end of the trial, they could report to their investors the overwhelming success of the new variation of Kalydeco for cystic fibrosis. (Sources for this are word-of-mouth from patients and CF specialists).

Though, one may have reason to be wary of some science-based treatment recommendations, the vast majority of empirical study is honorable and trustworthy; and more importantly seeks to be more rigorous and fairly tested. Most good experiments are designed to be falsifiable, and critique is welcome as it often leads to the expansion of available knowledge as well as honing in the details of what we already know. In the world of naturopathy though, the opposite is true.

Faith based medicine works backwards. They decide the result they want to be true, and design experiments to prove it so. If it can’t, they move the goal posts; they say that conventional science can’t accurately explain the mechanics of the mystical. Absence of evidence is not evidence of absence, they’ll say. They flip the hierarchy of reliable evidence on its head, rating anecdotal evidence higher than double-blind randomized placebo-controlled trials. Critical analysis is often met with hostility, defensiveness, and accusations of conspiracy. Oddly enough, when standard methodologies can give the positive results they were looking for, science is their friend, even if the experiment is an anomaly among similarly designed negative studies.

In other words, they decide what rules apply after they see the results. When a negative result occurs, it’s not because the treatment doesn’t work, only that the methodology used to test it failed. X treatment works, but this study failed to demonstrate that fact. That is a dishonest way of performing scientific studies.

Also dishonest, is the re-branding of models that are currently not acceptable forms of evidence, to be less factual but sound more credible. Much in the way a PR consultant will call for a creative new talking point to replace a label with bad press, natural medicine advocates will suggest dropping the word anecdotal from the vernacular in favor of “uncontrolled clinical observations.” A bit easier to swallow for those who are not savvy research professionals.

Since the creation of OAM (Office of Alternative Medicine) by the United States Congress in 1992 strong-armed by CAM friendly Senator Tom Harkin of Iowa, the National Center for Complementary and Alternative Medicine has played a different game than the rest of National Institute of Health standards. Because they couldn’t get funding playing by regular NIH rules, Tom Harkin and his committee instituted different rules so that grants could be permitted to fund studies of treatments which had been previously discredited or shown unreliable.

Even after a number of years of ineffective treatments continue receiving multiplying portions of the federal budget, there are still very few people calling for the reevaluation of this system of “alternatives.” Furthermore, the more extreme of alternative treatments that by any other standard would be considered unethical, are now protected in many states by “health freedom” laws, especially when the patient is considered terminal and has reached the end of the line as far as conventional medicine. Hmm…double standard much?

While I am not against the dignity of a person who is dying to choose how they want to be treated, it is my opinion that those who would offer an unproven, non-FDA approved treatment method for desperate patients are practicing unethically. Even if the treatment in question would not be at high risk for causing greater harm (which, frighteningly, many of them do), a placebo-type therapy is also unethical, because the practitioner is essentially lying to patients for a profit. These same practitioners are usually sheltered from malpractice suits because, again, they are playing by a different set of rules.

When a person or a group decides to change the already established rules, it is only for their benefit. Whether it’s to avoid punishment, financial loss, strategic disadvantage, or emotional disappointment, it’s a selfish act. As a child, that’s to be expected and is just part of growing up. When adults do it, it’s unfair to the other players, and disregards the societal responsibility of which we are all bestowed. Believers in natural medicine are sometimes the worst offenders, and this, to me, undermines the very trust that is required for a mutual transaction.