Any sociological question is likely going to have a complex answer with many variables that are not easy to tease apart. We should therefore resist the temptation to make simplistic statements about X being the cause of Y. We can still, however, identify correlations that will at least inform our thinking. Sometimes correlations can be triangulated to fairly reliable conclusions.
When the data is complex and difficult to interpret, however, evidence tends to be overwhelmed by narrative. The recent Sandy Hook tragedy is an excellent example. No one knows exactly why the shooter did what he did, so it is easy to insert your own preferred narrative as the explanation.
Another example is the phenomenon of so-called complementary and alternative medicine (CAM). Why has it been increasing in popularity (and is it, really?). Is it slick marketing, relaxed regulations, scientific illiteracy, a gullible media, or the failures of mainstream medicine? You can probably guess I think it’s all of these things to some degree. The most common narrative I hear by far, however, is the latter – if people are turning to CAM it must be because mainstream medicine has failed them. This version of reality is often promoted by CAM marketing.
The evidence that we have, however, simply does not support this narrative. Studies show that satisfaction with mainstream medicine is not an important factor in deciding to use CAM, that CAM users are generally satisfied with their mainstream care, and they use CAM because it aligns with their philosophy, and they simply want to expand their options.
We spend a great deal of time in the pages of Science-Based Medicine taking down every form of pseudoscience in medicine. Of course, what we see as pseudoscience, proponents often see as emerging or cutting edge science. They are taking advantage of the fact that there is a great deal of legitimate emerging science, and they hope they can sneak past the gates by cloaking themselves in the trappings of real science (jargon, studies, their own journals, etc.). Emerging science, however, no matter how plausible and earnest, still has yet to prove itself (by definition), and has to go through the rigorous process of scientific evaluation to slowly gain acceptance. That process – sorting out what works from what doesn’t, the real from the fake – is where all the action is in SBM.
It is refreshing sometimes to talk about an emerging field that, while still experimental, is legitimate and has the potential to usher in a genuinely revolutionary treatment.
I have been following the research into brain-machine interfaces for some years, and reporting on many of the significant “baby steps” in the advance of this new technology. A recent study published in The Lancet represents another incremental and encouraging advance. Researchers at the University of Pittsburgh implanted two strips of 96 electrodes into the motor cortex of a 52 year-old woman with tetraplegia. The electrodes are capable of detecting the firing of neurons in the motor cortex and transmitting those signals to an external processor that in turn controls a fairly sophisticated robotic arm. The arm is described as having seven degrees of freedom – three dimensions of translation, three dimensions of orientation, and one dimension of grasping.
After two days the subject was able to move the robotic arm with her thoughts alone. Over the course of the 13 week study she progressively gained control of the arm and eventually was able to feed herself with the arm. While this is still very far from a “cure” for paralysis or a restoration of full function, for someone who is tetraplegic (all four limbs are paralyzed) having any independent function is a huge improvement in quality of life.
So where are we with this technology?
So-called complementary and alternative medicine (CAM) is largely philosophy-based medicine rather than science based. There are a few core concepts that are endlessly recycled in various forms, but it is mythology and culture, not grounded in the rigorous methods of science that allow us to tell the difference between our satisfying fantasies and hard reality. Sometimes proponents of such philosophies try to cloak their beliefs in the appearance of science, resulting in what we simply call pseudoscience.
Harriet Hall coined an excellent term to refer to such pseudoscience -” Tooth Fairy science.” In her metaphor, pseudoscientists sometimes act like scientists by describing the details and statistics of their claimed phenomenon (such as examining all the details of the Tooth Fairy phenomenon) without ever testing the reality of the phenomenon itself. The fundamental concept at the core of their belief is never challenged, or only superficially so, and they proceed prematurely from their faulty premise.
Another term that I find extremely apt is “Cargo Cult science,” a term coined by Richard Feynman. This is a reference to the cargo cults of New Guinea – the pre-industrial tribes were observed building straw mock-ups of control towers, planes, and runways in hopes that the planes they observed flying over head would deliver their cargo to them. In other words – the cargo cults mimicked the superficial appearance of an aviation infrastructure but had none of the real essence or function (because of lack of understanding). This is a perfect analogy to much of what passes for science within the world of CAM.
Next month is the 5 year anniversary of Science-Based Medicine. We have published 1575 articles so far, with 72,400 comments. We are getting about 475,000 views per month, and SBM has attracted the attention of the mainstream media, government agencies, peer-reviewed journals, and even television and movie producers. Over the last five years we have endeavored to be a valuable resource for anyone interested in the science of medicine, targeting our articles at both a professional and general audience simultaneously.
We are trying to engage with future and current health care professionals with articles about how to evaluate the medical literature, the pros and cons of various approaches to data, and the pitfalls of clinical decision making. We have also tried to serve a consumer protection function by targeting many false and misleading claims for health products. Further we have advocated strongly for effective regulation of health care products and practices to maintain a single, fair, and effective science-based standard of care across all health care.
It seems that we have met our initial goal of creating a successful blog promoting science-based medicine. But there is so much more to do. And we need your support.
One of the core fictions of “complementary” or “integrative” medicine is that they are primarily offered in addition to science-based medicine and only to fill gaps in what SBM can offer. The original marketing label used to promote treatments that are not adequately supported by evidence , “alternative medicine,” was a bit more accurate in that at least it acknowledged that such treatments were being offered instead of SBM (the fiction being that they are a viable alternative, rather than just health fraud and pseudoscience). The switch to “complementary” and “integrative” did not reflect an evolving philosophy or practice, just an evolving marketing strategy.
Today proponents are likely to reassure the right people – journalists, regulators, and academics – that their offerings are not meant to replace proven therapies, but to complement them (the best of both worlds). (Mark Crislip is fond of pointing out that this is like mixing cow pie with apple pie. It doesn’t make the cow pie palatable, but it does ruin the apple pie.) However, behind closed doors practitioners of unscientific medicine generally prescribe their favorite pseudoscience instead of science-based treatments.
For example, Alice Tuff from Sense about Science investigated 10 homeopathic clinics in the UK.
In the consultations, Alice explained that she was planning to join a 10-week truck tour through Central and Southern Africa and that the anti-malarial drugs her doctor had prescribed made her feel queasy.
The results – all 10 homeopathy clinics offered homeopathic treatments for malaria protection, and none of them suggested this be done in addition to standard treatment. None of them referred Alice back to her medical doctor for further advice (in which case she could have been offered science-based alternative malaria treatments that she may have tolerated better). Only two homeopaths took a personal medical history.
There are several features of a symptom or illness that make it a convenient target for proponents of unconventional therapies. Subjective symptoms are more likely to be targeted than objective conditions – you don’t see many so-called “alternative” birth control treatments. Symptoms for which placebo effects alone are likely to produce the illusion of effectiveness are good targets for ineffective treatments. Symptoms that vary naturally over time also are good targets – patients are likely to seek treatment when their symptoms are maximal, which means spontaneous regression to the mean will provide an effective illusion of efficacy for any intervention. Illnesses with a substantial psychological component (such as those that are worsened by emotional stress or that are emotional, such as anxiety) are likely to benefit from non-specific effects of the therapeutic interaction, rendering the treatment itself irrelevant.
Finally, any condition or symptom for which there is currently no effective treatment provides a market ripe for exploitation.
Tinnitus has many of these features. Tinnitus describes the subjective experience of spontaneous noise perceived in one or both ears, which can be a buzzing, hiss, tone, or ringing sound. The severity of the tinnitus, its loudness, can vary over time, but perhaps more importantly the degree to which the tinnitus is bothersome can vary considerably. The sound is distracting and can have a significant impact on quality of life. Those with tinnitus can ignore the sound at times (depending on its severity), can be distracted from the sound, and may even learn through cognitive therapy to become accustomed to it. Therefore we might expect that tinnitus is amenable to placebo effects.
Finally, there is no proven effective treatment for tinnitus, which means that those who suffer from tinnitus may be desperate for a treatment. Desperation is a commodity highly prized by snake-oil salesmen.
There is an obvious survival advantage to the emotion of disgust – we should fear putting unhealthy, tainted, contaminated, or poisonous substances into our bodies. Emotions, however, are a double-edged sword. They are an effective evolutionary mechanism for motivating creatures to engage in certain behavior, but they also tend to be crude and undiscriminating – inadequate to deal with our complex modern society.
A dispassionate consideration of objective scientific evidence is the optimal strategy for deciding on which foods and substances are safe to consume, but it is far easier to scare people about toxins than to reassure them with data. We see this frequently with the anti-vaccine movement, and also with anti-fluoridation attitudes. It is easy to scare people with the idea that there are “chemicals” in our drinking water.
One company, San Diego Pure Water, seems to have made such scaremongering into a marketing strategy. Their website is full of articles and videos claiming that fluoride is the “the greatest fraud that has ever been perpetrated.”
It appears that we are near the beginning of a new modality in medicine – the use of computer controlled and powered robotics for therapeutic purposes. At present such technology is in its infancy, but is giving us a glimpse of what it will become.
Recently Vanderbilt University announced that its team at the Center for Intelligent Mechatronics has developed an exoskeleton that paraplegics can wear on their legs to allow them to sit, stand, and walk. This is essentially a mechanized orthotic that paraplegics can wear on their legs. The researchers describe it as a “Segway with legs” – referring to the computer technology that controls the exoskeleton, which responds to the user’s movement. If the user leans forward, then the legs will walk. If they lean back, then they will sit.
Like any technology, you can take either a glass half-full or half-empty view of this device. I will cover both – first the good.
Their system has some advantages over previous systems. It is about half the weight, coming in at 27 pounds while other lower extremity exoskeletons weigh 45 pounds. The exoskeleton is also small enough to fit in a standard wheelchair while being worn, and can be put on and taken off by the user alone. As described above, this system also incorporates intelligent control technology. Users with partial paralysis can have their own movements augmented, while for those with complete plegia the exoskeleton can do all the work.
A study recently published in PLOS one (Catechol-O-Methyltransferase val158met Polymorphism Predicts Placebo Effect in Irritable Bowel Syndrome) purports to have found a gene variant that correlates strongly with a placebo response in irritable bowel syndrome (IBS). The study is small and preliminary, but the results are interesting and do raise important questions about placebo responses.
Researchers are increasingly trying to tease apart the various components of “the placebo effect.” In reality we should use the term “placebo effects” as it is demonstrably multifactorial. “The placebo effect” really refers to whatever is measured in the placebo arm of a clinical trial – everything other than a physiological response to an active intervention. Within that measured response there are many potential factors that would cause an outcome from a fake treatment to be different from no treatment at all. These include statistical effects like regression to the mean and the natural course of symptoms and illness, reporting bias on the part of the subject, and a non-specific response to the therapeutic interaction with the practitioner.
It is also critical to realize that placebo responses vary greatly depending on the disease or symptom that is being treated and the outcome that is being measured. Placebo response is greatest for subjective symptoms of conditions that are known to be modified by things like mood and attention, while it is virtually non-existent for objective outcomes in pathological conditions. So there is a substantial placebo response for pain and nausea, but nothing significant for cancer survival.
One of the skills I try to teach medical students on their journey to becoming experience clinicians is to consider and address the patient’s “narrative.” Patients have a certain understanding of their illness, its cause, and its role in their life. They make sense of their situation as best as they can, resulting in a story they tell themselves. This is how humans generally deal with the complexities of life.
There is a potential problem when the clinical narrative of the health care provider conflicts significantly with the illness narrative of the patient. Patients, for example, often feel that a highly specific diagnosis is necessary for optimal treatment of their condition. Until they are given such a diagnosis they feel they need to keep looking – for better diagnostic tests or different specialists (what I call the “Dr. House” narrative). The appropriate diagnostic and therapeutic algorithm for that patient, however, may not require a specific diagnosis, but rather eliminating certain diagnoses and then treating the probable category or clinical syndrome that remains. The clinical narrative, in other words, may be one of considering risks vs benefits with incomplete and imperfect knowledge.
Increasingly, it seems, the conflict of narratives is taking on a larger scale – not just between one doctor and one patient, but between the medical community and patient communities. Perhaps this is one manifestation of the new social media generation. Take, for example, a recent controversy over a patient diagnosed with PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).