Karen S. Rommelfanger, PhD has over 10 years experience as a movement disorders neuroscientist. She now is the Program Director of the Neuroethics Program at the Emory Center for Ethics and is a Fellow in the Scholars Program for Interdisciplinary Neuroscience Research in the Department of Neurology in the School of Medicine at Emory where she conducts research on placebo therapy and psychogenic movement disorders.

She is the Neuroscience Editor-in-Residence at the American Journal of Bioethics Neuroscience and manages The Neuroethics Blog, and founded Neuroethics Women Leaders.

If a belief in a sickness makes you unwell, why not treat with a belief in getting better?

Placebos are generally defined as inert substances thought to have no medical value, such as a sugar pill that is believed to relieve patient medical symptoms through the expectation of getting better. Placebo effects can be elicited by a number of other things such as vitamins, antibiotics for viral infections, and sub-threshold doses of prescription medications.  The act of simply taking medicine or thinking that medicine might work can impact patient outcomes.

Some patients and physicians frown upon placebo use, primarily because placebo effects are thought to require deception; prescribing an “unreal treatment” betrays patient-physician trust. But what if placebos were not as “inert” as we once thought and instead provide therapeutic benefit? Then a new ethical question arises:

Are we harming patients by withholding placebo therapy?

Because, “It’s not all in my head.”

This is the sentiment resonating among the 18 teenage girls in Le Roy, New York who had sudden onset of mysterious symptoms of intrusive and involuntary tics and body movements.  Numerous videos of Dr. Drew episodes flood the Internet showcasing the girls’ unusual fidgeting, twisting, and uncontrollable twitching while their mothers worry at their sides.

Ultimately, the girls were diagnosed with Conversion disorder or mass psychogenic illness, conditions wherein psychological stressors versus “organic” pathology are thought to be literally converted to physical manifestations of symptoms (some more dramatic than others, ranging from paralysis and tics, to blindness and seizure-like movements).

While captive audiences are still scratching their heads over the unusual nature of the girls’ symptoms, physicians realize that these patients are actually quite common, and quite costly, for that matter. Conversion disorder and psychogenic movement disorders (terminology which is often used interchangeably amongst physicians) are paradigmatic of “medically unexplained illnesses,” estimated to cost the U.S.healthcare system upwards of $100 billion annually^1,2.

However, many of the girls from Le Roy seemed to prefer the diagnosis advanced by pediatric neurologist, Dr. Rosario Trifiletti, who suggested the patients were afflicted with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus). The Le Roy girls said of Conversion disorder, “I just don’t like the diagnosis” ²⁵ and instead expressed a preference for taking antibiotics for PANDAS, a disorder which they likely didn’t have, according to experts at the National Institutes of Health.

Fortunately, many of the girls in Le Roy have begun to recover after treatments with  antibiotics and therapy. [l1]²⁵ In other documented psychogenic cases, most [l2]  patients (50-90%) maintain their symptoms ^8,9,10,11,12 particularly if the patients are not properly diagnosed and if the patients don’t believe the diagnosis early, within the first 6-12 months of the onset of symptoms¹³. There is no standard treatment model for psychogenic patients. Psychotherapy is often recommended, but not received well by patients who believe they need to be treated by a neurologist, not for psychological symptoms they feel they don’t have.

In re-considering the diagnosis of PANDAS,  Dr. Rosario Trifiletti admitted that it would be hard to tell whether some of his patients’ recovery was from the antibiotics he prescribed or a belief in getting better – the “placebo effect”. In the case of the girls from Le Roy, perhaps receiving “real medicine” like antibiotics provided relief because it was consistent with the belief that they had a “real” illness like PANDAS. It’s unlikely that  Dr. Rosario Trifiletti was intentionally trying to treat these patients with a placebo. However, some physicians, in the absence of standardized therapies, have begun to advocate placebo therapy for psychogenic disorders and medically unexplained illnesses.

Placebo in practice

In 2008, two studies reported that 50% of physicians utilize placebo in practice (contrary to what they document in their medical records) ^14,15. Placebos can be very effective for some patients and by definition of their “inert-ness” have a low side-effect profile. Researchers at the Program in Placebo Studies and the Therapeutic Encounter at Harvard conducted a study which suggests that deception is not necessary for placebos to benefit patients, at least for Irritable Bowel Syndrome (IBS) patients. IBS patients who were told that they would be given “placebo (inert) pills, which were like sugar pills which had been shown to have self-healing properties…” experienced relief from their symptoms¹⁷.

To be clear: placebo therapy cannot serve as a substitute for chemotherapy, or surgery for broken bones, or vaccinations.

Image by Yawen Chan

Placebo, is perhaps, most compelling and promising as a treatment for conditions that currently have no successful standard measures of care, such as “medically unexplained illness” and psychogenic disorders that may otherwise severely disrupt the quality of life for a lifetime.  Indeed, a handful of recent studies have begun to show a positive impact of placebo therapy in the course or treatment for psychogenic patients ranging from short-term to long-term therapeutic strategies.

While scientists are still unraveling the mechanism of placebo, what is known is that placebo effects are intensely context-dependent.  Factors like color, or mode of delivery (i.e. an injection vs. a pill), or even what the physician says at the time of administration, can possibly affect their efficacy^18-24. For this reason, potentially influential factors must be analyzed. On top of this, it would be beneficial to identify which sub-populations would most benefit from the placebo effect.

Arguments about whether or not something is, “in your head” are changing as neuroscience continually illuminates new mechanisms for mental processes and mental illnesses. Indeed abnormalities in the brain have begun to be identified in psychogenic movement disorder patients. The fact is that placebos are already widely used and prescribed today and with significant benefits to those seeking treatment. We must move beyond asking whether we approve of placebo use or not and instead, we must re-invigorate the research on how and under what conditions to use placebo. Further research on the mechanisms of psychogenic disorders and placebo would have an impact on a host of medically unexplained illnesses, on an increasing trend of psychogenic patients, as well as for a wide range of everyday illnesses.

References

1. Anderson KE, Gruber-Baldini AL, Vaughan CG, Reich SG, Fishman PS, Weiner WJ, et al. Impact of psychogenic movement disorders versus Parkinson’s on disability, quality of life, and psychopathology. Mov Disord 2007;22:2204-9.
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19. de Craen AJ, Roos PJ, Leonard de Vries A, Kleijnen J. Effect of colour of drugs: systematic review of perceived effect of drugs and of their effectiveness. Bmj 1996;313:1624-6.
20. Gracely RH, Dubner R, Deeter WR, Wolskee PJ. Clinicians’ expectations influence placebo analgesia. Lancet 1985;1:43.
21. Kaptchuk TJ. The placebo effect in alternative medicine: can the performance of a healing ritual have clinical significance? Ann Intern Med 2002;136:817-25.
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25. https://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?pagewanted=all (Quotes from LeRoy story)