Hundreds of desperate combat veterans with Post-Traumatic Stress Disorder (PTSD) are reportedly seeking experimental treatment with an illegal drug from a husband-wife team in South Carolina. The Bonhoefers recently published a study showing that adding MDMA (ecstasy, the party drug) to psychotherapy was effective in eliminating or greatly reducing the symptoms of refractory PTSD. It was widely covered in the media, for instance in this article in the NY Times. It was only a small preliminary study, and the treatment is not yet ready for prime time; but media reports have sparked enthusiasm not justified by the evidence. (more…)
Archive for Neuroscience/Mental Health
I can think of few conditions with clinical features more ideal for establishing a pattern of abuse at the hands of practitioners of so-called alternative medicine than Tourette syndrome. Tourette syndrome (TS), which first manifests itself in early childhood in the overwhelming majority of patients, is a neurological disorder with infamous motor and vocal manifestations and a troubled past. Historically the condition was blamed on everything from emotional disturbances to outright faking to demon possession. But over the past few decades it has increasingly been recognized as a primarily organic disorder caused by negative genetic and environmental influences on areas in the brain which control movement and behavior.
I have a particular interest in Tourette syndrome, not just because I am a pediatrician but because I was diagnosed with the disorder at the age of seven. I have been lucky in that my symptoms, after a few rocky years in middle school and early high school, have been fairly mild. It is obvious to most people that I have a movement disorder, but it has never impacted my ability to function in society and succeed in my chosen profession of pediatric medicine. In fact, I often think of my Tourette’s as a positive aspect of my life, believing that it helped shape who I am as a person. I feel that it has helped instill in me positive personality attributes that are beneficial in the practice of medicine, such as empathy and compassion.
Patients that would have been institutionalized a hundred years ago, or worse as you go farther back in time, are now treated based on scientific advances in neuroscience and pharmacology, typically very successfully — that is if they manage to avoid involvement with quacks and charlatans. A 2009 survey of TS patients, or parents of patients with TS, revealed that nearly two thirds partake in alternative therapies with no proven benefit.
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.
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).
No Time to Waste: Avoidant Coping Style Scrambles Circadian Rhythms in Breast Cancer Patients, warned the headline of an article in Clinical Psychiatry News. The article went on to claim
Even in the earliest days following a diagnosis of breast cancer, maladaptive coping styles are associated with a disruption in circadian rhythms –which are proven in metastatic disease to be a prognostic indicator of mortality. The surprising finding… holds potentially profound implications for the timing and tailoring of psychosocial interventions in newly diagnosed patients.
And it invoked psychoneuroimmunology for an authoritative sounding warning to breast cancer patients:
The fact that circadian disruption was significant in a subset of patients a mean 19 [sic] days after diagnosis suggests that there may be no time to waste in identifying and treating potentially maladaptive coping responses that could impact not only their adjustment, but also their prognosis.
Women who are diagnosed with breast cancer, enroll yourself immediately in a stress reduction program or support group, if you want to stem the progression of your disease and prolong your life! If you have metastatic disease, maybe you can blame your “maladaptive coping,” your inept handling of the days and weeks immediately after your diagnosis. Such frightening messages to women who are vulnerable because they have just received their diagnosis should require high standards before being released. This article reeks of hype and distortion, starting with its emotional title, No Time to Waste and “Scrambles Circadian Rhythms,” continuing with claims of “profound implications for the timing of psychosocial interventions,” and ending with an exhortation to breast cancer patients that “early breast cancer patients certainly warrant paying closer attention to coping from Day 1.”
The issue is not just skewered science, because the article contains information that is easily misunderstood without a proper context. Breast cancer patients are urged to take get psychosocial intervention under the threat that if they do not, they are missing an opportunity to control the progression of their disease. This is an example of the irresponsible nonsense that I have been complaining in the past two blogs. There is simply no evidence that psychological interventions can slow progression of cancer or extend life. Claims to the contrary serve to burden cancer patients with an unrealistic responsibility for the outcome of their medical condition. Patients who experience progression to a terminal condition are provided with an irrational sense that they are to blame because they did not take the right steps, namely avail themselves of effective psychological interventions. This article implies that breast cancer patients with an unfavorable course have brought it on themselves by getting too stressed out.
It’s not clear whether journalist Betsy Bates Freed, PsyD. actually interviewed the authors of the study on which the story is based. Media coverage often offers direct quotes that appear to have been obtained directly from authors when they actually come from the scientific article. In this particular case, Freed provides a highly speculative direct quote that “circadian cycles regulate tumor growth” as if it came directly from the mouth of the lead author of the study. For the record, there is some evidence of an association between circadian rhythms and progression of metastatic breast cancer, but it is not clear that it is causal or affects”regulation” or in what direction any causal arrows run. Importantly, such findings have not been replicated with early breast cancer patients.
Clinical Psychiatry News is not some dubious CAM website, but an Elsevier published monthly newspaper with an advisory editorial board with recognizable scientist and clinician psychiatrists. It has largely free web access because of pharmaceutical company support. One has to question what editorial control over content is exerted before releasing articles like No Time to Waste.
I love reading quotes by the likes of Karl Popper in the scientific literature. A recent replication of Bem’s infamous psi research, Feeling the Future, gives us this quote:
Popper (1959/2002) defined a scientifically true effect as that “which can be regularly reproduced by anyone who carries out the appropriate experiment in the way prescribed.”
The paper is the latest replication of Daryl Bem’s 2011 series of 9 experiments in which he claimed consistent evidence for a precognitive effect, or the ability of future events to influence the present. The studies were published in The Journal of Personality and Social Psychology, a prestigious psychology journal. All of the studies followed a similar format, reversing the usually direction of standard psychology experiments to determine if future events can affect past performance.
In the 9th study, for example, subjects were given a list of words in sequence on a computer screen. They were then asked to recall as many of the words as possible. Following that they were given two practice sessions with half of the word chosen by the computer at random. The results were then analyzed to see if practicing the words improved the subject’s recall for those words in the past. Bem found that they did, with the largest effect size of any of the 9 studies.
There is something in molecular biology and genetics known as the “central dogma.” I must admit, I’ve always hated the use of the word “dogma” associated with science, but no less a luminary than Francis Crick first stated it in 1958, and it has been restated over the years in various ways. Perhaps my favorite version of the central dogma was succinctly stated by Marshall Nirenberg, who said, “DNA makes RNA makes protein,” which about sums up all of molecular biology in five words. Or at least it did until the last ten or twenty years, when we’ve been finding exceptions to this dogma.
I don’t want to dwell on the central dogma. As I’ve said, I loathe the use of the term “dogma” to describe anything in science, although a discussion of the central dogma and its exceptions might make for a decent post one day. What brought the central dogma to mind is a series of articles I saw recently in ONCOLOGY: Perspectives on Best Practices that let me to ponder the question: What is the “central dogma” of “alternative medicine”? I realize that alt-med is an unwieldy gmish of ideas that range from the semi-plausible but unproven to the completely ridiculous (i.e., homeopathy or reiki), but after reading these articles and thinking about it, I do believe that there is in actuality a “central dogma” of alternative medicine. I also believe that it is entirely appropriate to call it a “dogma” in this situation, because it is far more a matter of faith than it is of science. Moreover, the more that quackademic medicine infiltrates academic medicine, the more this “central dogma” has infiltrated academic medicine with it. Indeed, as you will see, when this central dogma is questioned, even by someone sympathetic to “complementary and alternative medicine” (CAM; i.e., “complementing” medicine with quackery) or “integrative medicine” (i.e., the “integration” of pseudoscientific medicine with medicine).
My science writing covers diverse topics but increasingly concerns two intertwined themes in cancer and psychology. First, I bring evidence to bear against an exaggerated role for psychological factors in cancer, as well as against claims that the cancer experience is a mental health issue for which many patients require specialty mental health interventions. Second, I explore unnoticed social and organizational influences and publishing practices, which limit evaluation of the best evidence for theories and practices claiming to be evidence based, especially those recommended (and even mandated) by professional organizations and accrediting bodies.
I benefit from a great set of international collaborators, and my colleagues and I have repeatedly debunked claims that psychological interventions increase the survival time of cancer patients by improving their immune systems. Wally Sampson and Bernie Fox provided important inspiration for these efforts. A key source of such claims is the classic Lancet study by David Spiegel, which I will dissect in a later post for ScienceBasedMedicine.org (for now, see our published critique of Spiegel).
Dying of cancer can be a horrible way to go, but as a cancer specialist I sometimes forget that there are diseases that are equally, if not more, horrible. One that always comes to mind is amyotropic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. It is a motor neuron disease whose clinical course is characterized by progressive weakness, muscle atrophy and spasticity, with ultimate progression to respiratory muscles leading to difficulty breathing and speaking (dysarthria) and to the muscles controlling swallowing. The rate of clinical course is variable, often beginning with muscle twitching in an arm or a leg or slurring of speech. Ultimately, however, ALS progresses to the loss of ability to move, speak, eat, or breathe. The most common cause of death is from respiratory failure, usually within three to five years after diagnosis, although there is the occasional outlier with a less malignant form of the disease with a slower course of progression who can live a long time, such as Steven Hawking.
In other words, ALS is a lot like cancer in some ways. It is a progressive, fatal disease that usually kills within a few years at most. On the other hand, it is different from cancer in that, at least for many cancers we actually do have effective treatments that prolong life, in some cases indefinitely. In contrast the most effective treatment we currently have for ALS is a drug (riluzole) that is not particularly effective—it prolongs life by months—and can be best described as better than nothing, but not by a whole lot. So it is not surprising that ALS patients, like cancer patients, become desperate and willing to try anything. This is completely understandable, but sometimes this desperation leads to activities that are far more likely to do harm than good. I was reminded of this when I came across a post in the antivaccine propaganda blog, Age of Autism, referring to an article in The Scientist entitled Medical Mavericks. The fortuitous posting of this story, which was apparently designed to try to show that it’s not as crazy as critics have said to be treating autistic children with “Miracle Mineral Solution” (MMS) (which is a bleach) given that the introduction explicitly mentioned Kerri Rivera and the patient described in the article used sodium chlorite to treat his ALS, provided me the opening to discuss a group whose existence and advocacy brings up a complex tangle of issues that boil down to questions of how far patient autonomy should be allowed to go. I’m referring to a company, PatientsLikeMe, which describes itself thusly:
I’ve just returned from TAM, along with Steve Novella and Harriet Hall. While there, we joined up with Rachael Dunlop to do what has become a yearly feature of TAM, the Science-Based Medicine workshop, as well as a panel discussion on one of our favorite subjects, “integrative” medicine. Between it all, I did the usual TAM thing, meeting up with old friends, taking in some talks, and, of course, spending the evenings imbibing more alcohol than I probably should have so that I could look and feel my best for our morning sessions, particularly given my difficulty adapting to the time change. One thing I did was completely unexpected, something I learned about the night before our workshop when I happened to run into Evan Bernstein. He informed me of something that our fearless leader Steve Novella was going to do the next day right after our workshop. In a nutshell, Evan told me that Steve was going to debate an antivaccinationist. Evan didn’t know any details other than that Michael Shermer had arranged it and that Steve had been tapped at the last minute. Evan didn’t even know who the antivaccinationist was going to be or what the event was. Naturally, I was intrigued.
So, the next morning I asked Steve about it. I turns out that the event was FreedomFest, a right-wing/Libertarian confab that happened to be going on at the same time as TAM up the road a piece on the Strip at Bally’s. Steve didn’t know who the antivaccinationist was going to be either, which made me marvel at him. I don’t know that I’d have the confidence agree to walk into the lion’s den with less than a day’s notice not even knowing who my opponent is. Steve was more than happy to invite me along. Clearly, this was was an opportunity that I couldn’t resist. So we met up with Michael Shermer, and it was from him that I learned that Steve’s opponent was to be Dr. Julian Whitaker.
My eyes lit up.