Soapbox Science

Placebo for Psychogenic Illnesses: Why “It’s all in my head” does and doesn’t matter

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 Blogand 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 annually1,2.

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 efficacy18-24. 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.
  2. Kranick SM, Gorrindo T, Hallett M. Psychogenic movement disorders and motor conversion: a roadmap for collaboration between neurology and psychiatry. Psychosomatics 2011;52:109-16.
  3. CarsonAJ, Ringbauer B, Stone J, McKenzie L, Warlow C, Sharpe M. Do medically unexplained symptoms matter? A prospective cohort study of 300 new referrals to neurology outpatient clinics. J Neurol Neurosurg Psychiatry 2000;68:207-10.
  4. Jankovic J, Vuong KD, Thomas M. Psychogenic tremor: long-term outcome. CNS Spectr 2006;11:501-8.
  5. Miyasaki JM, Sa DS, Galvez-Jimenez N, Lang AE. Psychogenic movement disorders. Can J Neurol Sci 2003;30 Suppl 1:S94-100.
  6. Chen DK, Izadyar S. Characteristics of pychogenic nonepileptic events among veterans with posttraumatic stress disorder: an association of semiology with nature of trauma. Epilepsy Behav. 2010; 17: 188-92.
  7. 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.
  8. Factor SA, Podskalny GD, Molho ES: Psychogenic movement disorders: frequency, clinical profile, and characteristics. J Neurol Neurosurg Psychiatry 1995, 59(4):406-412.
  9. Jankovic J, Vuong KD, Thomas M: Psychogenic tremor: long-term outcome. CNS Spectr 2006, 11(7):501-508.
  10. McKeon A, Ahlskog JE, Bower JH, Josephs KA, Matsumoto JY: Psychogenic tremor: long-term prognosis in patients with electrophysiologically confirmed disease. Mov Disord 2009, 24(1):72-76.
  11. Thomas M, Vuong KD, Jankovic J: Long-term prognosis of patients with psychogenic movement disorders. Parkinsonism Relat Disord 2006, 12(6):382-387.
  12. Thomas M, Jankovic J: Psychogenic movement disorders: diagnosis and management. CNS Drugs 2004, 18(7):437-452.
  13. Gupta A, Lang AE. Psychogenic movement disorders. Curr Opin Neurol 2009;22:430-6.
  14. Sherman R, Hickner J. Academic physicians use placebos in clinical practice and believe in the mind-body connection. J Gen Intern Med 2008;23:7-10.
  15. Tilburt JC, Emanuel EJ, Kaptchuk TJ, Curlin FA, Miller FG. Prescribing “placebo treatments”: results of national survey of US internists and rheumatologists. Bmj 2008;337:a1938.
  16. Benedetti F, Mayberg HS, Wager TD, Stohler CS, Zubieta JK. Neurobiological mechanisms of the placebo effect. J Neurosci 2005;25:10390-402.
  17. Kaptchuk TJ, Friedlander E, Kelley JM,SanchezMN, Kokkotou E, Singer JP, et al. Placebos without deception: a randomized controlled trial in irritable bowel syndrome. PLoS One 2010;5:e15591.
  18. Finniss DG, Kaptchuk TJ, Miller F, Benedetti F. Biological, clinical, and ethical advances of placebo effects. Lancet 2010;375:686-95.
  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.
  22. Kaptchuk TJ, Eisenberg DM. The persuasive appeal of alternative medicine. Ann Intern Med 1998;129:1061-5.
  23. Kaptchuk TJ, Stason WB, Davis RB,LegedzaAR, Schnyer RN, Kerr CE, et al. Sham device v inert pill: randomised controlled trial of two placebo treatments. Bmj 2006;332:391-7.
  24. MoermanDE, Jonas WB. Deconstructing the placebo effect and finding the meaning response. Ann Intern Med 2002;136:471-6.
  25. http://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?pagewanted=all (Quotes from LeRoy story)

 

 

Comments

  1. Report this comment

    Nancy Tozierfcefxer@yahoo.com said:

    It’s Dr. Rosario Trifiletti, not Dr. Rosario…..Jeesh. And Dr. T was right. He healed those girls and now they are better.

  2. Report this comment

    Kathleen Hallal said:

    I am wondering about your research in writing this article. Did you, in fact, try to reach Dr. Trifiletti? It is Dr. Trifiletti, Dr. Rosario Trifiletti, not Dr. Rosario. How would you explain the fact that he saved our 7 year old son, who, like the girls in NY, had only some of the NIMH’s (Dr. Susan Swedo’s white paper) defined symptoms for PANDAS, or PANS? Since he was only 7, do you think our boy KNEW what “vitamins” we were giving him? (Antibiotics.) Would you say that his behaviors disappeared COINCIDENTALLY with the reduction in his strep titers? Psychosomatic, eh? A seven year old? Really. I suggest you call Dr. T and get the facts, so that you can correct your misquotes and erroneous citations. There may indeed be some incidents of illnesses out there that are psychosomatic, but I believe in the case of those girls in NY, there were strep titers that were reduced, and, as in the case of my son, as the titers went down, the behaviors disappeared. Maybe you could call Dr. T. Or, ask Dr. Swedo of the NIMH (or any other PANDAS expert) if that is how PANDAS patients recover. I think doctors will tell you that generally, yes, that is how it works in most cases. It is simple, really. As the antibodies to strep (or other infections or viruses) disappear, so too, do the symptoms of PANDAS. PANDAS, or PANS, is real to those of us who have lived with it, and I just cannot imagine why you would intimate that those girls’ afflictions were “all in their heads” just because they did not meet every criteria of the NIMH. Trust me, this stuff is not in my child’s head. It is all too real, even though he would not have met all of the NIMH criteria. I think you should have examined the medical documentation and interviewed Dr. Trifiletti before coming up with your article. He has helped hundreds of children, after they had numerous miserable and expensive visits to specialists who told them “it was all in their heads.” You are doing other PANDAS/PANS patients a great disservice by suggesting there is no medical treatment for what may appear on the outside to be psychological. Antibiotics did not help my son, or these girls, because they “thought” they would work. They helped all of these young people because they drove the titers down.

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