In 2010, following the H1N1 pandemic and the vaccination campaign to reduce its impact, researchers noted a significant increase in a rare neurological disorder, narcolepsy, in Sweden and Finland. Since then researchers have been studying a possible association between a specific H1N1 flu vaccine, Pandemrix by Glaxo-Smith-Kline (GSK) and a sudden onset of the sleep disorder narcolepsy. In those two countries the association seems strong, but the full story is still complicated with many unknowns.
Narcolepsy is a neurological disorder marked by excessive sleepiness, cataplexy (sudden loss of muscle tone, usually triggered by emotions) and disordered sleep. Almost all cases are associated with low levels of hypocretin in the hypothalamus – this is a hormone involved in sleep regulation. Further there is a strong HLA (human leukocyte antigen) association – specifically DQB1*0602. HLA is a group of proteins involved in regulating immune activity. An HLA association strongly suggests that narcolepsy may be an auto-immune disease.
The current synthesis of this information is that narcolepsy occurs in genetically susceptible individuals after some environmental trigger, such as in infection, that causes the immune system to attack and destroy hypocretin cells in the brain.
Science journalist Sharon Begley wrote a recent piece in The Saturday Evening Post about Placebo Power. The piece, while generally better than the typical popular writing on placebos, still falls into the standard placebo narrative that is ubiquitous in the mainstream media. The article is virtually identical to a dozen other articles I have read on placebo effects in the popular press, and most significantly fails to even question that narrative.
Begley is generally one of the better science journalists, although I have had my disagreements with her – specifically over her attitude toward the relationship between skeptics and the media. She seems to have a distorted and negative view of skeptics and does not think that the media can or should help us in our “debunking crusade.” (The term itself speaks of a fundamental misunderstanding of the modern skeptical movement.)
I have also parted ways with Begley over her view of the relationship between science and medicine. She seems to have a fairly negative view of doctors, fueled in part by her imperfect grasp of medical science. This is the risk with even the best lay science journalists – science is often complex and it is difficult to master the nuances if you are not an expert and steeped in the evidence and the community. Further there is a tendency for people in general (including journalists) to go along with an appealing and available narrative. (For journalists those narratives that are appealing are the ones that make good headlines.) These shortcomings are present throughout her recent article on placebos.
A recent report commissioned by Arthritis Research UK reviewed 25 so-called “alternative” therapies for arthritis. They found, not surprisingly that there is little evidence to support most the studied treatments.
“There’s either no evidence that they’re effective or there’s some evidence that they are not effective.
Says lead author, Dr Gareth Jones. It is important to note that we are not just talking about that these treatments are poorly studies, but also that to the extent they are studied the evidence is mixed or shows lack of efficacy.
I want to discuss, however, the exceptions – the treatment the report found were effective. They include acupuncture, tai chi, yoga, and massage. Tai chi and yoga are basically forms of exercise and stretching, so it is not surprising that they are helpful in treating musculoskeletal disorders. It is deceptive, in my opinion, to even consider them “alternative” and lump them into the same artificial category as copper bracelets and magnet therapy. Exercise is not alternative – it is a very basic form of science-based activity for health, conditioning, and for musculoskeletal symptoms. The same is essentially true for massage, which is known to relax muscles (at least temporarily). Relaxation therapy should also not be considered “alternative” and existed long before this category was invented.
The only item on the list of treatment modalities that the report concluded showed some efficacy that is reasonably defined as “alternative” was acupuncture. This claim caught my attention because other reviews of the literature indicate that acupuncture is not effective for arthritis (or anything else). The report itself is not published in a peer-reviewed journal (at least not yet), but the lead author, Gareth Jones, has published prior systematic reviews.
Quackery in medicine takes many forms – use of bad science (pseudoscience), fraud, and reliance on mysticism are a few examples. Perhaps the most insidious form of dubious practice, however, is to use genuine and promising medical science to promote treatments that are simply not at the point of clinical application. New treatments, and especially new approaches to treatment, in medicine often take years or decades of research before we get to the point that we have sufficient clinical evidence of safety and effectiveness to apply the treatment in clinical practice.
One example of the premature promotion of an otherwise legitimate scientific medical treatment are the many dubious stem cell clinics promising cures for serious diseases. Stem cell science is real, but we are still in the long period of build up when we are mostly doing basic and animal research. Human clinical trials are just beginning.
Another treatment approach that is being prematurely promoted by some is nutrigenomics. The claim is that by analyzing one’s genes a personalized regimen of specific nutrients can be developed to help their genes function at optimal efficiency. One website that promises, “Genetics Based Integrative Medicine” contains this statement:
Nutrigenomics seeks to unravel these medical mysteries by providing personalized genetics-based treatment. Even so, it will take decades to confirm what we already understand; that replacing specific nutrients and/or chemicals in existing pathways allows more efficient gene expression, particularly with genetic vulnerabilities and mutations.
The money-quote is the phrase, “it will take decades to confirm what we already understand.” This is the essence of pseudoscience – using science to confirm what one already “knows.” This has it backwards, of course. Science is not used to “confirm” but to determine if a hypothesis is true or not.
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.