Shakin' Street — A Parkinson's Blog

An episode of the podcast Hidden Brain taught me about “open label” placebo studies — clinical trials in which patients are told from the beginning that they are taking a pill, shot, or infusion that does not have real medication in it.

The episode tells the story of Linda Bonanno, a Massachusetts hairdresser who suffered for years from Irritable Bowel Syndrome. She signed up for a clinical study of patients with intestinal problems.

[Host Shankar] VEDANTAM: A physician gave Linda capsules to take twice a day. But then he told Linda something that dashed her hopes – the capsules she was about to take – they were a placebo.

BONANNO: Oh, I was disappointed. I knew it was a sugar pill. Because I graduated from Hesser College as a medical assistant. So I knew a placebo was a sugar pill. And I thought, he made me come all the way down here to take a sugar pill? (Laughter) I thought to myself, why is he doing this?

VEDANTAM: Why tell Linda she was getting a placebo? Wouldn’t that undermine the effect of the sugar pill? Well, that’s what the study was supposed to test – could a placebo help patients if they knew it was a placebo?

VEDANTAM: The study had 80 patients and was being run by Ted Kaptchuk. It was an open-label placebo trial – instead of deception, patients would receive what Ted has called radical honesty. The study was based on an insight – the placebo effect wasn’t just about the pills. It was about an edifice of drama, rituals and the trust between patients like Linda and their doctors. Even though Linda was disappointed to get a placebo, she followed her doctor’s orders.

BONANNO: I just took them and went about my day. I said, this is not going to work if it’s a sugar pill. And it wasn’t until the fourth day I realized I wasn’t sick anymore. I said, this can’t be.

VEDANTAM: Starting on that fourth day, the pain that Linda had suffered through for a decade vanished.

(SOUNDBITE OF MUSIC)

BONANNO: For three weeks, I felt fantastic. I had no IBS. I wasn’t sick. I was taking those pills every day. And I couldn’t believe it.

VEDANTAM: Many other patients in the study got similar relief. Volunteers who received the open-label placebo reported twice the improvement in their quality of life as those who received no treatment. Now, this was a small study, but Ted has looked at the effects of using open-label placebos for other medical conditions. He’s found similar, sometimes even better, results for low back pain and cancer-related fatigue. Placebos administered with radical honesty have the potential to help people.

Most people in the Parkinson’s community are familiar with the placebo effect — when a pill, shot, infusion, or surgery does not possess conventional therapeutic properties but sometimes seems to work anyway. Placebos are often used in clinical trials, and they can have a significant impact on Parkinson’s patients – patients sometimes show improvement even when they did not receive the “real drug.”

In conventional studies, deliberate deception is involved –patients (and often the doctors) don’t know who got the genuine treatment and who got the placebo.

Linda Bonanno had a very different experience. As part of an “open label” trial, she knew from the outset that she was getting a sugar pill – a placebo.

Even with that knowledge, her condition improved dramatically within days. When the trial was over, and the doctor would no longer give her the sugar pills, her symptoms came back, as bad as before.

According to the Michael J Fox Foundation, the placebo effect can be significant for Parkinson’s patients: “Brain imaging studies show that placebos stimulate the release of dopamine, which plays a role in the brain’s reward system.”

This makes me wonder about what I’m taking. My symptoms improved significantly when I started taking Carbidopa/Levodopa — if I took a couple of Altoids four times a day, would I see the same effect?

I think about open-label placebo trials when I spend time on the Parkinson’s Alternative Healing Facebook page. The page has posts from patients who’ve tried Mucuna, Lions Mane, B1 therapy, and Ivermectin. Some posters say they’ve gotten great results from these treatments, and some have not. In the past I’ve assumed that many of them were deluding themselves. But the patients in Ted Kaptchuk’s study KNEW they were getting a placebo — and it worked anyway!

Ultimately, it shows how little we know about Parkinson’s, and about the human brain. My bias still leans toward conventional medicine, but I’m increasingly willing to consider options that get the job done, even if the available evidence says they shouldn’t.

Bonus for Those Who Read to the Bottom

Before I became a “Parkinson’s person,” I spent 30 years in the advertising business. The Super Bowl is our big day, with lots of attention devoted to corporations who spent millions of dollars to reach a huge audience.

Following the game, you’ll see a variety of media folks passing judgment on the commercials, talking about the “good ads” and the “bad ads.”

Here’s my favorite story from the past: Salesgenie.

In 2007, Salesgenie, a sales-lead-by-subscription service, ran a Super Bowl commercial that was disliked by the vast majority of the media’s judges. Bob Garfield of Advertising Age called it “monumentally brainless and amateurish.” The commercial finished dead last in USA Today’s Ad Meter.

It lives on in cyberspace — enjoy it courtesy of YouTube, and then tell me if it’s a good commercial or a bad commercial:

A few days after the game, USA Today had this to report:

•Salesgenie.com. The sales-lead website generated more than 10,000 new customer subscriptions by late Monday, far more than the 700 it said it needed to break even on its ad cost. “Our ad wasn’t supposed to be funny or clever,” InfoUSA CEO Vin Gupta says. “It was supposed to bring in subscribers, and it’s been successful beyond our wildest dreams. We’re already working on next year’s ad.”

They needed 700 subscriptions to break even on the ad, and they got 10,000. This would seem to be a very nice ROI.

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Here’s the opposite — a Super Bowl Volkswagen commercial everyone loved except the car dealers who didn’t make any money.

A few days after the game, I met with a Volkswagen dealer in Hawaii. I asked him what he thought of the ad.

He wasn’t impressed.

He told me that several days before the Super Bowl, Volkswagen had sent out an email blast offering Volkwagen owners special incentives to come in and test-drive a Beetle. The dealership also sent out its own email to its database making the same offer.

“How many people have responded to the offer?” I asked.”So far… zero,” replied the dealer.

I asked him if anyone had mentioned the ad in the showroom that day. “If you mean any customers… no. I think Volkswagen kind of forgot to sell the car.”

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Unrelated to the Super Bowl: From a West Virginia fast food restaurant, here is quite possibly the most primitive commercial production I’ve ever seen. So.. is it “good,” or is it “bad?”

This commercial would not do well on the USA Today ad meter.  But that’s not how the advertiser kept score.

This ad had one job — to move more hot dogs during the middle of the week. It performed magnificently, delivering an immediate double-digit lift in hot dog sales on Tuesday, Wednesday, and Thursday.

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Finally, here’s a viral sensation that drove a lot of traffic to a Montgomery furniture store. Unfortunately, the owner has told several interviewers that the traffic did not result in the sales he needed – people would walk in, take pictures and dance with him, and then leave without buying anything. Flea Market Montgomery is now a memory.

But I like this, and it’s my blog. So here it is. Enjoy!