From pipeline email - this is a study about IBS that pinpoints the stress on a trial participant from worrying about whether he/she has the real thing or the placebo. Imagine what sham surgery can do to a person's psyche.


Cult Med Psychiatry. 2009 Sep;33(3):382-411.

"Maybe I made up the whole thing": placebos and patients' experiences in a randomized controlled trial.
Kaptchuk TJ, Shaw J, Kerr CE, Conboy LA, Kelley JM, Csordas TJ, Lembo AJ, Jacobson EE.

Osher Research Center, Harvard Medical School, 401 Park Drive, Boston, MA 02215, USA. ted_kaptchuk@hms.harvard.edu

Patients in the placebo arms of randomized controlled trials (RCT) often experience positive changes from baseline. While multiple theories concerning such "placebo effects" exist, peculiarly, none has been informed by actual interviews of patients undergoing placebo treatment. Here, we report on a qualitative study (n = 27) embedded within a RCT (n = 262) in patients with irritable bowel syndrome. Besides identical placebo acupuncture treatment in the RCT, the qualitative study patients also received an additional set of interviews at the beginning, midpoint, and end of the trial. Interviews of the 12 qualitative subjects who underwent and completed placebo treatment were transcribed. We found that patients (1) were persistently concerned with whether they were receiving placebo or genuine treatment; (2) almost never endorsed "expectation" of improvement but spoke of "hope" instead and frequently reported despair; (3) almost all reported improvement ranging from dramatic psychosocial changes to unambiguous, progressive symptom improvement to tentative impressions of benefit; and (4) often worried whether their improvement was due to normal fluctuations or placebo effects. The placebo treatment was a problematic perturbation that provided an opportunity to reconstruct the experiences of the fluctuations of their illness and how it disrupted their everyday life. Immersion in this RCT was a co-mingling of enactment, embodiment and interpretation involving ritual performance and evocative symbols, shifts in bodily sensations, symptoms, mood, daily life behaviors, and social interactions, all accompanied by self-scrutiny and re-appraisal. The placebo effect involved a spectrum of factors and any single theory of placebo--e.g. expectancy, hope, conditioning, anxiety reduction, report bias, symbolic work, narrative and embodiment--provides an inadequate model to explain its salubrious benefits.

PMID: 19597976 [PubMed - indexed for MEDLINE]

Paula
I've been hovering over this thread topic for days, not knowing where to begin. You and I know this has been a bone of contention for the Pipeline Project for years. Bottom line, I believe researchers have over-used (maybe even abused) this placebo effect in dealing with Parkinson's disease. They are (in my opinion) saying that for PD research to be accurately pure and "objective," one is to not have hope or expectations in the results of experimental treatments.

I am too tired to reply fully tonight, but I'd like for some of you to read this article from The Skeptic Magazine before commenting. Does anyone know how reliable the information in this magazine is? (Calling all librarians!)

Here's an excerpt to entice you to read it: (source link at the end)

Hope, optimism, and the belief in a positive future (i.e., faith) is essential for human psychological and neurological functioning, a concept that was first addressed in the 1950s by the psychiatrist Vicktor Frankl, who was imprisoned in a Nazi death camp until the end of World War II. In his famous book, Man’s Search for Meaning, he said that the single most important thing that kept a survivor alive was faith. . . .

Now, faith in an optimistic future may be a placebo, but it’s important to remember that placebos can cure, on the average, 30% of the majority of physical and emotional diseases. Even an irrational belief in a cure that has been proven not to work can significantly boost the body’s immune system when dealing with a deadly disease.2

But what about unrealistic faith or optimism? Recently, a team of National Institutes of Health researchers concluded that “a moderate optimistic illusion” appears to be neurologically essential for maintaining motivation and good mental health.3 They also found that highly optimistic people had greater activation in the same parts of the anterior cingulated, a part of the brain that plays a crucial role in controlling anxiety, depression, and rage, as well as fostering social awareness and compassion.

Source: http://www.skeptic.com/eskeptic/09-05-27

"Hope, optimism, and the belief in a positive future (i.e., faith) is essential for human psychological and neurological functioning, a concept that was first addressed in the 1950s by the psychiatrist Vicktor Frankl, who was imprisoned in a Nazi death camp until the end of World War II. In his famous book, Man’s Search for Meaning, he said that the single most important thing that kept a survivor alive was faith. . . .

Now, faith in an optimistic future may be a placebo, but it’s important to remember that placebos can cure, on the average, 30% of the majority of physical and emotional diseases. Even an irrational belief in a cure that has been proven not to work can significantly boost the body’s immune system when dealing with a deadly disease.2

But what about unrealistic faith or optimism? Recently, a team of National Institutes of Health researchers concluded that “a moderate optimistic illusion” appears to be neurologically essential for maintaining motivation and good mental health.3 They also found that highly optimistic people had greater activation in the same parts of the anterior cingulated, a part of the brain that plays a crucial role in controlling anxiety, depression, and rage, as well as fostering social awareness and compassion.

Source: http://www.skeptic.com/eskeptic/09-05-27 [/QUOTE]"

Wow, Pegleg, this is awesome! I'm going to try to get this book at our local library today, and if they don't have it, this may be one I buy! Excellent, thanks for sharing.