Tuesday, December 20, 2016

OHNOMOPOMO! Justifications and Unsolicited Advice

Ed. Note: Harriet Hall was injured in a fall in Australia earlier this month. While she recovers, we are running guest posts in her regular Tuesday slot for as long as our supply of guest posts lasts. (Hint: If you ever thought of submitting a guest post and want a shot at your guest post being published on a Tuesday, now’s the time.) We wish Harriet well and hope she recovers sufficiently to resume blogging soon.

Vast sectors of the humanities and the social sciences seem to have adopted a philosophy that we shall call, for want of a better term, “postmodernism”: an intellectual current characterized by the more-or-less explicit rejection of the rationalist tradition of the Enlightenment, by theoretical discourses disconnected from any empirical test, and by a cognitive and cultural relativism that regards science as nothing more than a “narration”, a “myth” or a social construction among many others.
—Alan Sokal

The hoax and beyond

It was a bold and potentially haphazard thing of him to do. He wasn’t uneducated by any means, with a B.A from Harvard and a Ph.D. from Princeton, but he was wading into waters that would mire him in controversy. Like a modern Voltaire lampooning the misguided philosophies of his time, Alan Sokal decided to parody postmodernism and its abuse of science, and to do so in one the most esteemed intellectual circles of the PoMo movement, the prestigious Duke University’s Social Text.

In 1996, Alan Sokal wrote a completely nonsensical article titled “Transgressing the Boundaries: Towards a Transformative Hermeneutics of Quantum Gravity,” and submitted it for review and potential publication. To his surprise, it survived the vetting process, and was printed in the Spring/Summer issue titled “Science Wars.” Unbeknownst to the publishers and the journal editors, the article was filled with completely meaningless uses of words from physics and outright parodies of common postmodern thought. To give just one example:

In quantum gravity, as we shall see, the space-time manifold ceases to exist as an objective physical reality; geometry becomes relational and contextual, and the foundational conceptual sciences — among them, existence itself — becomes problematized and relativized.

Sokal continues with a lengthy and jargon rich argument that uses Heisenberg’s uncertainty principle, Einstein’s theory of relativity, and an array of other naming conventions from particle physics to essentially say that scientific epistemology is subjective, and that quantum mechanics only demonstrates its lack of objectivity. On the day that the article was published, Sokal revealed to the academic magazine Lingua Franca, that “Transgressing the Boundaries” was a hoax, and that the editors, many of whom were leaders of the postmodern movement, had fallen for it. To put it mildly, the ivory tower erupted.

Sokal went on to write numerous articles, books, and refutations of the criticism that came back to him, further clarifying his position on what he refers to as a modest scientific realism:

…we want to defend a modest realism: one which insists that the goal of science is to find out how things really are and which asserts we are making progress in that direction, but which recognizes that this goal will always be incompletely achieved and which is aware of the principal obstacles.

In a statement that echoes two decades later, when words like quantum, ionize, and energy have come to permeate popular discourse about health and healing, Sokal writes:

We are sometimes accused of being arrogant scientists, but our view of the hard science’s role is in fact rather modest. Wouldn’t it be nice (for us mathematicians and physicists, that is) if Gödel’s theorem or relativity did have deep implications for the study of society? Or if the axiom of choice could be used to study poetry? Or if topology had something to do with the human psyche? But alas, it is not the case.

Wouldn’t it also be nice if someone could use their thoughts and hands to channel quantum particle fields into my autoimmune disease-ridden body, and that it would mean the end of my suffering? But alas, it is not the case.

Why critical thinking matters

My immune system has declared mutiny and is overthrowing the synovial lining of my joints. I have rheumatoid arthritis. Inflammation, pain, stiffness, and mind-numbing fatigue are common characteristics. Long-term disease activity can result in serious and debilitating deformities, and complications can result in an early death.

The photo on the left is what my hands looked like on the day I was diagnosed. Both of my feet, my shoulder, and my wrists were similarly swollen. The photo on the right is what my hands look like when the disease is controlled.

The photo on the left is what my hands looked like on the day I was diagnosed. Both of my feet, my shoulder, and my wrists were similarly swollen. The photo on the right is what my hands look like when the disease is controlled.

It is an extraordinarily difficult condition to live with physically, psychologically, and socially. I am often dumbfounded when I share my struggles and diagnosis with others. More often than not, rather than receiving the empathy and understanding I often hope for, I receive ridiculous and unfounded suggestions, statements about my age and appearance of physical health, or unwanted advice and attempts to sell me snake-oil. The most absurd claims are not just egregious conflations of rheumatoid arthritis with other unrelated conditions, but clichés of pseudoscience and the denial of science.

I encounter many individuals who seriously think I should forego traditional medical treatment and turn to “natural healing” methods. However, even the National Center for Complementary and Integrative Health (NCCIH) clearly states:

Conventional treatments are highly effective in slowing or stopping permanent joint damage in RA. Do not replace conventional medical therapy for RA with an unproven health product or practice…Early treatment to avoid permanent joint damage is key for preventing disability and progression of RA… In general, there is not enough scientific evidence to prove that any complementary health approaches are beneficial for RA, and there are safety concerns about some of them.

The following are some of the reasons I have been given to forego conventional medicine, with my own attempt to clarify such confusion.

“Doctors are treating symptoms, not the cause of the disease.”

Unfortunately, the cause of RA is unknown. In fact, evidence suggests pathogenesis likely has multiple potential pathways, with genetic and environmental factors interacting. Regardless, there are thousands of different potential illnesses one can have. This hasty generalization about doctors and symptoms gets someone like me nowhere. Not only that, when used as justification for turning away from medicine, it makes an if (A) then (B) fallacy. Even if I granted that (A) were true, I would still rather treat only my symptoms with tested and regulated treatments where the efficacy rate is known and the potential side effects and risks are documented, than (B) treat my symptoms with scientifically unsupported, undocumented, and unregulated methods. The real answer however is neither (A) nor (B), but (C).

Disease Modifying Anti Rheumatic Drugs (DMARDs), the medications I use, treat the disease pathway. One example of many is Tumor Necrosis Factor (TNF); a well understood cytokine that plays a role in systemic inflammation. The current biologic DMARD I am on inhibits TNF, and my symptoms have mostly abated as the result of it. There are other medications, for instance glucocorticoids, which are helpful during acute disease flares when my hands and feet become massive and agonizing, or my jaw becomes practically locked shut. They have also been shown in systematic reviews of radiographic evidence to slow disease progression over the course of 1-2 years, though longer-term use raises other health concerns.

Treatment is complicated, and is based on the disease profile of the patient. I have tried non-biologic DMARDs as well, such as methotrexate, as well as combinations of the two. There are also various courses of RA: monocyclic, polycyclic, and progressive. Treatments are going to vary based on individual needs and history. RA is one disease among thousands. Hasty generalizations about what doctors are doing just won’t do.

“Big Pharma is covering up the cures!”

The next one is a tumble down the rabbit hole I have heard on only one occasion in person (from a Ph.D. in psychology no less!), though I have seen it floating around the world wide wreck: “Cures for diseases like RA exist, but Big Pharma is covering them up because they make more money treating you for life.”

As one with a chronic disease, this also gets me nowhere. Used as justification for turning to unscientific methods, it also makes the “if (A) then (B) fallacy”. Even if it were true, as Ben Goldacre has stated:

The problem with the conspiracy, like most, is that it quickly turns into an infinite regress of unfalsifiable claims. Stephen Hawking hilariously illustrated this type of reasoning in the first chapter of A Brief History of Time.

A well-known scientist (some say it was Bertrand Russell) once gave a public lecture on astronomy. He described how the earth orbits around the sun, and how the sun, in turn, orbits around a vast collection of stars called our galaxy. At the end of the lecture, a little old lady at the back of the room got up and said: ‘What you have told us is rubbish. The world is really a flat plate supported on the back of a giant tortoise.’ The scientist gave a superior smile before replying, ‘What is the tortoise standing on?’ ‘You’re very clever, young man, very clever,’ said the old lady. ‘But its turtles all the way down!’

How do we know that out of the two hundred rheumatic diseases amongst the thousands of other diseases in the world, the cure for RA has been found and is being covered up? “Well we can’t of course, because it is being covered up!” How do we know it is being covered up? “Because we don’t know what the cure is!”

Never mind the global network of researchers, the financial incentives, prestigious recognition, and ability to set prices based on projected profits and investments, it is turtles all the way down!

“Big Pharma systematically biases drug research! And don’t forget about publication bias!”

This is still not a reason to turn to non-science. However, bias is a genuine concern in science, which is why systematic reviews, double blinded experiments, random sampling, calculations for confidence and error, establishing plausibility, replicating findings, and a rigorous sorting through of evidence prior to arriving at a conclusion are part of the scientific process. There are also independent groups, some of which write guidelines for treatment. In my case, there is the American College of Rheumatology, “…an independent, professional, medical and scientific society that does not guarantee, warrant, or endorse any commercial product or service.” In 2015 they set out to systematically review the literature on RA management and treatment. According to their “Disclosures and management of conflicts of interest”:

In accordance with ACR policy, everyone who was intellectually involved in the project (i.e., considered for guideline authorship) disclosed all relationships in writing at the beginning, middle, and end of the project. Disclosures were compared against a previously drafted list of “affected companies” (i.e., companies or organizations that were considered reasonably likely to be positively or negatively affected by care delivered in accordance with the guideline) to determine which relationships were considered conflicts of interest for purposes of this project.

The ACR, with the objective of developing a new evidence-based, pharmacologic treatment guideline for rheumatoid arthritis, used:

…systematic reviews, randomized controlled trials (RCTs), and observational studies (including case series). We searched OVID Medline, PubMed, Embase, and the Cochrane Library (including Cochrane Database of Systematic Reviews; Database of Abstracts of Reviews of Effects; Cochrane Central Register of Controlled Trials; and Health Technology Assessments).

They also rate the quality of evidence based on a grading scale, which covers:

…the risk of bias in included trials, the likelihood of publication bias, inconsistency between trial results, indirectness of the evidence (e.g., differences between populations, interventions, or outcomes of interest in the group to whom the recommendation applies versus those who were included in the studies referenced), and imprecision (wide confidence intervals, usually due to a small number of patients or events, or those situations where clinical decision-making would differ at the extremes of the confidence interval).

Though anecdotal, my doctor started me on the lowest risk treatments for my condition (also the cheapest), and then moved me up in risk profile due to not obtaining a significant reduction in inflammation. I don’t think I am smarter than my doctor, as the gap of knowledge that divides us is huge, but when I am injecting myself with costly medications that come with potential health risks (not treating my disease is a much greater health risk), I do like knowing that her recommendations come from practice guidelines that have done everything possible to minimize bias. She is not playing blackjack with my health, and I’m not pulling the lever on the slot machine of my health every time I stick a needle in my leg.

The answer to bias is not to turn away from science, but to use scientific methods and the scientific process to eliminate it as far as conceivably possible.

“Reality is an illusion”

When all else fails, one can always deny science entirely as one of my family members did shortly after he found out about my diagnosis: “All diagnoses of Western Medicine are an illusion. Just believe as hard as you can that it is not real, and it will go away!”

Unfortunately, I have believed I am an astronaut for twenty years, but have yet to make it to the moon. A basic test of the idea that RA is real would be to follow me around with a measuring tape for a few months taking daily perimeter measurements of my joints. Quite quickly one will realize that my fingers, hands, and feet do something different than the vast majority of people. Unless sixth grade math is also an illusion, social construction, or myth due to the Solipsism and/or PoMo defense!

The term rheumatoid arthritis conveys a whole lot of information to those who are familiar with the disease, and also functions as part of a system of diagnosis, treatment, research, epidemiology, and etiology, as well as bureaucratic functions of insurance coverage and disability qualifications. The problem Sokal was pointing to in his hoax is that too often people confuse the function of naming conventions in science with everyday language. Words like relativity or rheumatoid arthritis refer to tremendous amounts of knowledge and fit into very complex scientific frameworks.

Conclusion: Wishful thinking doesn’t change reality

The goal of science is to find out how things really are and which asserts we are making progress in that direction, but which recognizes that this goal will always be incompletely achieved and which is aware of the principal obstacles.

Though a lot is known about RA, there is still a lot that is unknown. Whether or not a treatment will work for me can’t be precisely forecast ahead of time, though the rate of efficacy in a population of people with the same disease as me can be known. I make difficult decisions related to my health often, and I try to do so with the absolute best knowledge available. Having RA carries serious health risks, and so does treating it. No amount of wishful thinking can change that. The best option is to increase knowledge, increase precision, decrease bias, systematically test plausible ideas, and incrementally improve areas of the discipline that are found lacking, not turn away from it due to its imperfections.

Michael BoothMichael Booth spent two decades in elite and professional levels of cycling, acrobatics, and stunt work prior to being diagnosed with rheumatoid arthritis at the age of thirty three. Since that time he has received a Master of Science in Applied Psychology, and began teaching in the Behavioral Sciences. He is in the midst of planning future graduate training and a career in Health Psychology and Public Health.


OHNOMOPOMO! Justifications and Unsolicited Advice Michael Booth

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