The Nocebo Effect with Charlotte Blease, PhD, and Cosima Locher, PhD: Rational Wellness Podcast 343
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Charlotte Blease, PhD, and Cosima Locher, PhD, discuss The Nocebo Effect with Dr. Ben Weitz.
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Podcast Highlights
1:45 The placebo effect is when a patient feels better after taking a sugar pill of some other treatment that is not thought to be able to help them, because they believe that it will help them. When a scientific study is conducted they often have a placebo arm with one group getting the pill with the active ingredient and the other group getting a pill without the active ingredient, which is referred to as the placebo group. And yet a significant percentage of the patients who get the placebo improve. The nocebo is sort of the opposite of the placebo in that if the patient believes or has fears or expectations that they are likely to have side effects or a negative result from a medication or treatment, they may have such negative effects. The book The Nocebo Effect: When Words Make You Sick is designed to bring awareness to the nocebo concept, which has been much less researched than the placebo effect. And this book also attempts to bring some solutions so that nocebo effects occur less frequently.
Charlotte Blease, PhD is a philosopher and health researcher at Beth Israel Deaconess Medical Center, Harvard Medical School, and the Department of Women’s and Children’s Health at Uppsala University, Sweden. The book that Charlotte and Cosima helped write is The Nocebo Effect: When Words Make You Sick.
Cosima Locher PhD is a psychologist who has published in leading medical journals and is the co-founder of the Pain Net, an international network of researchers interested in chronic pain with a special focus on the placebo and nocebo effects.
Dr. Ben Weitz is available for Functional Nutrition consultations specializing in Functional Gastrointestinal Disorders like IBS/SIBO and Reflux and also Cardiometabolic Risk Factors like elevated lipids, high blood sugar, and high blood pressure. Dr. Weitz has also successfully helped many patients with managing their weight and improving their athletic performance, as well as sports chiropractic work by calling his Santa Monica office 310-395-3111. Dr. Weitz is also available for video or phone consultations and he uses DUTCH testing regularly.
Podcast Transcript
Dr. Weitz: Hey, this is Dr. Ben Weitz, host of the Rational Wellness podcast. I talk to the leading health and nutrition experts and researchers in the field to bring you the latest in cutting-edge health information. Subscribe to the Rational Wellness podcast for weekly updates. And to learn more, check out my website drweitz.com. Thanks for joining me and let’s jump into the podcast.
Hello, Rational Wellness podcasters. Today our topic is on The Nocebo Effect: When Words Make You Sick, which is a new book with two of the authors. So, Charlotte, maybe you want to introduce yourself.
Charlotte: Okay. So my name’s Charlotte Blease. I’m a researcher at Uppsala University in Sweden. I’m affiliated to digital psychiatry at Harvard Medical School, Beth Israel Deaconness Medical Center there. My background’s very interdisciplinary as a health researcher. One of the topics I’ve been interested in is the placebo effect and the nocebo effect, which we’ll get into.
Dr. Weitz: Great. And, Cosima, can you introduce yourself?
Cosima: Yes, thank you, Ben. So my name is Cosima Locher.
Dr. Weitz: Cosima.
Cosima: Yes, exactly. I’m based at the University of Zurich, which is in Switzerland. My background is I’m a psychologist and I’m primarily interested in the placebo research, but also ethical considerations, health in general, and chronic pain primarily. Yes, exactly.
Dr. Weitz: Great. So, the placebo effect is basically, my understanding is, when someone such as a patient feels better after taking a sugar pill or some other treatment that is generally not thought to be able to help them with whatever condition or symptom they’re dealing with, such as pain. It’s generally thought that they feel better or their condition improves because they feel that they have been given a pill or a treatment that will help them. If they’ve been told that it will work and they have confidence in that, it increases the likelihood that they’ll feel better. Now, we often conduct scientific studies to prove the efficacy of drugs and medical treatments by comparing a group of patients that take the pill with the active medication and another group that takes a identical pill that doesn’t contain the medication, what we often refer to as say, a sugar pill.
Now, the placebo group is generally not expected to improve while the group that gets the medication is. Except that we’ve discovered over time that a significant percentage of patients who get the placebo group, who get the placebo treatment or pill, actually do improve. And so this has been referred to as the placebo effect, and there’s been a ton of research going on about this. And the nocebo is sort of the opposite of the placebo in that if the patient believes or has fears or expectations that they are likely to have side effects or a negative result from a medication or treatment, they may have such negative effects.
The book The Nocebo Effect: When Words Make You Sick is designed to bring awareness to the nocebo concept, which has been much less researched than the placebo effect. And this book also attempts to bring some solutions so that nocebo effects occur less frequently. Perhaps you can both weigh in a little more on what exactly is the nocebo effect and why it’s an important concept?
Charlotte: Sure. I can kick us off. The nocebo effect, to characterize it, is often depicted as this malevolent or evil twin of the placebo effect. So it is this effect that arises when patients or people in general anticipate some adverse health outcome. And they may have learned this health outcome somehow through medical encounters. This is something we discuss, our contributors in the book discuss in various ways. So that words matter in medicine, what you doctor says to you matters, or your psychotherapist. Something that Cosima has written about. But also what you believe is going to happen or what the outcome is going to be can affect your health and potentially in a negative way.
Dr. Weitz: Right.
Cosima: Yeah. Of course, this is all very important also for clinical practice. So this is also something that I’m quite interested into look what happens then in the clinic. And if you think how doctors for example, introduce when they give a medicine, what this can also have in terms of side effects, that this is very crucial the way how this information is being given. So we also talk about this in our book. Primarily I think [inaudible 00:05:30] talk about what can clinicians do to minimize this information about side effects. So this is very hands-on also in clinical practice and very relevant. And it can really make a change, so words are very powerful also in the opposite way, as you said, the counterpart of placebo.
Dr. Weitz: Yeah, I do think that’s some really important points. I do think that it’s underappreciated from both patients and even practitioners how important the placebo and the nocebo effect are. I think a lot of physicians don’t necessarily think about it as much as they should in their communication with their patients. One of the things that I was surprised to read about in your book, was actually when you remarked that, “53% to 89% of physicians in the U.S. actually knowingly prescribe placebos to their patients.” Meaning, they’re giving them a treatment that they don’t think it really has the ability to help them, but they do it just because they want to help their patients and they tell the patient that it’s going to help them.
Charlotte: Yeah, it’s a fascinating finding. What’s interesting is that you see in lots of countries worldwide, these kinds of surveys have been conducted among clinicians internationally. You do find, depending on the sample size, but quite high percentages of doctors say that they do this. We’ve done some survey work, I did some survey work in the States, in Boston, on this. There are a variety of reasons why doctors do this. Some of them, they do want to offer something. Some of it is a bit of a performance anxiety thing that they want to be able to offer the patient something. Sometimes they don’t know what to offer. And they’re not sure what’s going to work. And they might present, and this is what Cosima is saying, “Words matter.” The performance, the presentation of what it is you want to offer the patient might influence them to think that this… Might, if you will, engender some hope.
Dr. Weitz: Do you have maybe one or two examples of why a physician might offer a patient in this situation?
Charlotte: Yeah, it may be that they’re not… Fatigue is one of the many… Who isn’t feeling tired? But a lot of time when people go to the doctor, they might say, “Look, I’m not getting any sleep. I’m excessively tired.” And that could be a really serious underlying health problem. But, if a patient presents with that in combination with other symptoms perhaps the doctor might offer them or suggest a vitamin or something like that. They might suggest some dietary supplement.
Dr. Weitz: After all, since we know vitamins can have no benefit. Just kidding.
Charlotte: Well, you know, if this issue…
Dr. Weitz: Coming from somebody from the functional medicine world.
Charlotte: Right. It’s this sort of gray area where you’re suggesting something. And in this case, the vitamin or the supplement or whatever, could do something to the patient. But is it also in addition potentially going to elicit a placebo effect? Are they going to feel a little bit better? And it’s these kinds of nudges where we get into the gray area between transparency being completely honest and the doctor saying, “I don’t really have anything to offer.” Versus, I’m willing to offer something to give some kind of hope or potential benefit.
Dr. Weitz: I would like to also posit that I suspect that one of the reasons why in the United States physicians may feel compelled to offer some medication even if they know that they likely have no medications that really address the problem, is because our healthcare system, which is essentially run by insurance companies, requires doctors to have very short office visits. You need to get in an out of that room, and the patients want to feel like they’ve been given something. So, I think there’s a tendency to prescribe something.
A situation that I’ve seen over the years very commonly is a patient comes in with a cold or a flu. Which we know is caused by a virus. We have no medications that really control viruses, for the most part. So, they’re given a prescription for an antibiotic and the patient feels like that’s going to help them. I think the physicians feel like, “Okay, now I’m done with the visit. I did something to satisfy the patient.” And unfortunately, it sometimes has untowards side effects. Like in this country, we have this overuse of antibiotics that have led to bacteria that are not responding to antibiotics anymore.
Charlotte: Right. I think that’s a universal concern in western countries, this overprescribing of antibiotics. As you said, the classic example, antibiotics for a viral condition, it’s offering the patient something.
Dr. Weitz: Right. Yeah.
Cosima: I think this is a very important of course, explanation of looking at the doctor’s side and what is happening. And you have this very limited hour and time. This is also something that is I think also very common in several countries. But it’s also when you look at the patient for example, I did a lot of research in the field of chronic primary pain. So where it’s not about the etiology. So in chronic secondary pain, we know what happens for example, a broken leg or whatever, full of pain because of cancer or because of an accident. But in chronic primary pain, according to the new IDC-11, it’s quite unknown what is the etiology. And these patients, they do really suffer and they have real pain. And they do often doctor shopping. They want to have something that helps them. And I think Charlotte, what you mentioned with hope is so important, right? They really have this desire for relief and they are desperate. And this is very, very understandable. I think what happens there is also this feeling of I have to give this patient something because this patient is now in a really bad state. There are studies which really show that when a physician can do something in comparison when the physician is feeling himself or herself helpless, this gives in the brain a kind of benefit. So I think this is obviously also what physicians have and want to do, helping the patient. So this is all quite complex, I would say.
Charlotte: Definitely.
Dr. Weitz: Let’s switch to nocebo, and let’s talk about some common situations in medicine where the most nocebo effect comes into effect. You mentioned the use of statin drugs as a common situation, because so many patients have heard that statin drugs are going to cause muscle pain, or brain fog or other symptoms.
Charlotte: Yeah, I mean, I think it’s as many as about 200 million people take statins worldwide. But there’s been some fascinating studies show that when patients are given placebos in clinical trials of statins that up to 90% of the side effects could be attributable to nocebo responses. So, it’s this interesting confluence of public awareness through media. So media can play a role here, what you’ve read. Some of it could be to a certain social contagion, so people anticipate what they’ve heard on the grapevine, so to speak, all the people, all their patients.
But some of it may also be… And this is where we get into in the book, what do we mean by nocebo effect? Is it the genuine anticipation, this is going to be harmful that induces it? Or, are people saying that they’ve got some of these conditions? And they may have some underlying somatic complaint that they’re attributing to the statin. So it’s disentangling these is another aspect of really getting into the science and it’s complicated. You’re going to hear us say, “Everything is complicated.” It’s just a really complicated area.
And it’s important not to be too reductive. And this is why this book is so important because there really hasn’t been anything published on this evil twin, this nocebo effect. And how best we study it, and what exactly it is, really honing in on it.
Dr. Weitz: And it’s certainly, it’s not as simple as it’s just completely a psychosomatic thing. Because there are patients who like you just mentioned, maybe they do have some underlying muscle pain and had that before, and now they’re attributing that to maybe taking the statin drug. There’s some patients who are having a psychosomatic effect and they think they’re getting muscle pain, and they’re not. But there are some patients who are actually getting muscle pain, some patients who actually their health gets worse. And there’s even been patients who’ve been reported to have died from the nocebo effect. Isn’t that correct?
Charlotte: I’ll let Cosima answer this controversial…
Cosima: This is also complicated. But there is this one famous study where a patient apparently felt like almost dying because he wanted to suicide himself. And he took a lot of these drugs, and he was currently, I think in a study, a patient of a study. And he wanted to suicide himself and took an overdose. And then in the hospital it turned out that actually this person was in the placebo arm of the study. So, I think that many studies also you know, studies…
Dr. Weitz: And that person died?
Cosima: No, that… But almost. It looked as if, all the symptoms where you would say someone almost died. But I think there are always case reports when you do… Whatever field you’re in, you have case reports, and of course, this is one line of how you can examine a phenomenon. But I think that it’s also very important of course, to do replications. Not even of a case, but also of a study. Usually when a phenomenon is new, and people are very excited about it, we see that the effects are quite large. And we have maybe a power issue, because we have small sample sizes. Then it’s always very important of course, to replicate the findings, to network, or meta analysis, and reviews. I think the more we do that, the more accurate we can achieve.
Dr. Weitz: But of course you can’t have a placebo controlled study about nocebos, right? Or can you?
Cosima: Yeah, there’re very interesting ways of how to examine nocebo effects, of course, yeah. I think one person once said there is… I mean, most research has been done in the field of placebo because this is the usual control group. When you do for example, I did a lot of studies in antidepressants. When you do a placebo study in the antidepressant study trial, then you also have the nocebo effect there because you can look whether the two arms, antidepressant and placebo differ in terms of the appearance of side effects. So then you have the nocebo in there as well.
I think Charlotte mentioned that we have, with statins so many side effects. The thing is, it really matters how you frame side effects, whether you say, “Two out of 10 people have whatever, nausea.” Or whether you say, “Eight out of 10 do not have nausea.” So, there is a systematic review which really show that this makes quite a big difference, whether you positively frame it or negatively frame it.
Dr. Weitz: Well actually, let me… What I mentioned as a possibility, as a question. Do we have cases of patients who have parameters about their health whether they be measurable biomarkers, or other parts of their condition that get worse, as a result of nocebo?
Charlotte: I can give you one example of a… And this is again, just a caveat this of what Cosima is saying. Part of this book is an invitation to other researchers. We need replications of these studies. We need larger sample sizes. What a really interesting study with people with dust mite allergy, and giving them a milkshake with the allergen in it. In a sense teaching them, but like Pavlov’s dog. You’ve heard of Pavlov’s dog with the bell ringing and then the dog salivates. Every time the bell rings, dinner is there. You just need to ring the bell and the dog’s salivating, ready to eat. But this was in a sense, looking at this possibility of conditioning with nocebo effects with patients. What they find was, presenting them after this learned conditioned response, that you could offer the milkshake and you would get the inflammatory biomarkers were there among patients, as if they had been given a touch of the allergen.
Again, we need more of these kinds of studies. But there is some interesting work. Other studies are on what’s often been called anticipatory nausea. So you can induce motion sickness, for example. Give people fruit juice or something, induce motion sickness. The same setup. And then just offering them the juice will make them think they’re ill. And this is really important, of course. So many drugs, cancer, many medications have linked to this kind of side effect, that puts people off taking the medications. So, anything we can do to minimize these kinds of effects where possible is going to be critical.
Cosima: Yeah, and I think it’s also very important that the nocebo, so all the examines, also in the book, we don’t only focus on research where we have this nocebo/placebo. Because nocebo is always there also in the varum, in any kind of drugs. There is a very nice study where patients wants openly reduced their drug. I’m not sure whether it was opioids or whatever, so they reduced whatever they take. And they somehow expect side effects, right? Because this is what you would expect with reducing opioids. Once this was openly done, so the physician, they know when they reduce their intake or infusion. And once it’s unclear, so they say, “Look, there’s this machine, you have the infusion.” Over a longer period of time, at a specific point this will be reduced but we don’t tell you when exactly.
We say that the side effect’s due to drug reduction. They are really different between this open and hidden reduction. This shows that the nocebo effect is also present even if we don’t have a placebo pill that is examined. So, I want to really underline what Charlotte said, how crucial this is in clinical practice. It’s not only if you prescribe a placebo, it’s with every varum.
Dr. Weitz: Now, you mentioned cancer. And you talk in the book about how the nocebo effect can come up in the context of cancer care. This is a very complicated situation for doctors, especially if they’re providing a patient with a diagnosis, or making treatment recommendations about a life-threatening condition, like a stage IV cancer diagnosis. I personally have noticed a number of patients who were suffering with a metastatic cancer, stage IV. They really didn’t have a very good prognosis. They were provided with some form of treatment, typically chemotherapy, or some other drug that’s supposed to help with the cancer. It’s my understanding from the situation that I’ve seen that the treatment was palliative but the patient’s thought it was curative. I don’t actually know exactly what the doctor said to the patient, but the patient would come in saying, “Oh yeah, I’m getting better. This is going to cure it.” Either the doctor wasn’t clear about how they explained it. I’ve heard of situations where doctors will not tell the patient exactly how grim the diagnosis is, and maybe tell the family.
It’s a difficult situation for the doctor because the doctor is required to make sure the patient understands the condition, gives informed consent for treatment. On the other hand, if there is a glimmer of hope that the patient might get better, you’ve got to be really careful as a physician, or you should be careful not to just say, “Hey, you’re almost certainly going to die. This treatment at best is going to give you a couple of months.” Why would the patient even bother to do it?
Charlotte: It’s a really tricky area. And as you say, the doctor is walking a tightrope between balancing these different ethical concerns. On the one hand, they are really required, and this is, for most of the history of medicine, doctors had a therapeutic privilege. They didn’t tell the truth to patients. They used their own discretion about what they thought was the right thing to do. From the mid-20th century, after the second world war, some of the atrocities with Josef Mengele, the Tuskegee syphilis trial in the States, we’ve reached an awareness that part of medical ethics codes, patients should be respected. And they should be respected to make their own decisions about their treatment plans. We respect the patient’s autonomy to make their decisions. To do that, you’ve got to furnish them with the truth. This is where the nocebo effect gets really tricky because you want to balance honesty and openness with not causing harm to the patient. In these cases…
Dr. Weitz: Maybe giving them some sense of hope.
Charlotte: Or giving them hope, and benefiting the patient. So, the doctor wants to benefit the patient, maximize the treatment. It comes optimizing as far as possible. First, do no harm, of course. So minimize sources of harm, including nocebo effect, which can have consequences. Unless we say that if you anticipate side effects, one of the biggest reasons that patients will quit is because they don’t like side effects for the treatment plan. So, balancing that with the patient’s decision about what it is they want to do and to think about what it is they want to do, weighing that out for themselves about what the best decision is, against their values and so on.
This is not an easy area. We do discuss this in the book. We have an eminent medical ethicist who’s contributed, Mark Wenonley, from Italy. Who has contributed a chapter on medical ethics, and what it is you should do in these scenarios. There are no clean answers to this. This is what makes medical ethics an interesting area of research. So it’s tricky.
Dr. Weitz: You give some recommendations for maybe ways that doctors can communicate the situation in say, a cancer diagnosis that’s not that good. But do it in a way that doesn’t just totally… It minimizes the likelihood of patient having a nocebo effect, essentially.
Charlotte: Yes. On some of that comes down to what Cosima said, it’s the framing of the information. It’s how you convey it. It’s also the framing, so it’s the words that you use that convey the same facts, but doing it in a way that might lead to a more beneficial response from the patient side. Some other suggestions that have been made are this idea of discussing with the patient that they might not want to know the side effects. So, medical ethicists talk about authorized concealment. So you might have a discussion to say, “Look, there are some serious side effects here. Do you want to know them?” This I think, is perhaps more of the kind of philosophers or medical ethicists theoretical dream. In reality, I don’t think these things necessarily work because we’ve all got the internet. Apparently, health searches are second only to porn searches. So it’s one thing sitting with your doctor and saying, “Yeah, I don’t want to know.” And then you leave the doctor’s office and you say, “To hell with it, I want to find out what’s…” You Google it, somebody tells you.
Cosima: The patients want to know, so what we surveyed, right?
Charlotte: They want to know, yeah.
Cosima: They want to know, so I think very important to mention that patients want to know, so basically the maturity. I think it also comes down, besides all the strategies, authorized concealment, but also the way we frame and education. I think it always comes also down to the patient-physician relationship. So it really matters whether you trust your physician, whether you feel guided by your physician. I think that will probably be the best way of concentrating on the positive or informative information.
Also, I think it’s important to know that of course, positive expectations are good, so this is what we mean with we try to boost interventions by… But, actually, realistic expectations are the best. This is also a study shows. Negative expectations of course, is not what we want. And this is also with minimizing harm. We don’t want to be over positive. This is actually also harming patients. I think it’s about setting realistic but also empathic around expectations, being in a trust-based relationship. It all comes down sometimes to the relationship between patient and physician.
Dr. Weitz: Yeah, I do think that that’s something that physicians probably don’t get that much training in, is how to effectively communicate with patients.
Charlotte: What Cosima said in terms of the relationship is so central. Patients that say they want to get the information from their doctor, they get it online because as you said Ben, they have very limited amount of time with the doctor. Doctors are under serious pressure too. Time is the most vital resource in healthcare.
So, they will look online if they don’t get that information. But they want to get it from the doctor. It’s about signaling, as Cosima’s underlined, if you overcompensate or you try too hard to instill hope and then you go overboard, and the patient then doesn’t quite trust. I have a very good friend, she’s got a rare condition and she says, “God, when they offer me another… I know when they’re offering me placebos. And I just can’t stand it because I don’t trust them anymore after that.” On the other hand, she recognizes why some doctors may do this occasionally with her symptom, obviously, in a chronic condition.
So it’s this again, balancing act between signally competence and empathy. You understand that those are two facets also of the demeanor of the clinician, that can be important in optimizing a placebo effect response to… Potentially minimizing nocebo effect. But for that, you’ve got to be in the realm of honesty.
Dr. Weitz: The last chapter in your book you mentioned, or the next to the last chapter of the book, you mentioned some of the social phenomenon involving the nocebo effect. I thought this was a great title of a chapter, it’s called, From Genetical Shrinking Panics to Humming Giraffes: The Many Faces of the Nocebo Effect. I guess there have been some social phenomenon in which the nocebo effect has taken place. And one of the things you mentioned is this Havana Syndrome situation which took place in Cuba. I didn’t really understand it that well, but apparently a bunch of Americans working in Cuba, working for the state department, et cetera, had a series of symptoms and there was this investigation into whether some new weapon was being used by Russia. It sounds like from the latest information that there was really no evidence of some new weapon that cause these symptoms.
Charlotte: Yeah. Go ahead, Cosima.
Cosima: I think yeah, it’s very important, I think these chapters. We also have this media chapter where we see how influential the media and social media of course are. Also, with the idea of, I think it goes viral, and people, they read of course, the incident and so on. This is really crucial in our daily lives. I think we have to really consider new ways of communication. I think this shows really nicely, all these chapters show that this is not somehow a disentangled context between the physician and the patient, but rather more we have to always consider the context.
This is also something that we know from placebo research. So it’s a much more complex again, than only this interaction between two people. I think again, we see with this example that you, I think, summarized really nicely, is that of course, it’s not going down to the sugar pill again. So it’s much bigger actually what we can subsume on the nocebo.
Charlotte: What I would add to that is, it gets into disambiguating what the nocebo effect is here. So, we do have these other… I mean, what happened with this Havana Syndrome, or a more recently which our colleagues, Mike Bernstein and Walter Brown have written about is the bed bugs situation. You might have read about it in the… You start itching and so on. Oh, I’m going to read about it in the nocebo effect. In France and Paris, and then it was people were staying in hotels and then traveling the rails.
Dr. Weitz: I heard a little bit about it. Maybe you can tell us more. I don’t really understand it.
Charlotte: Yes. It was this outbreak of bed bugs in France and Paris apparently in hotels. I’ve been in France, that’s why [inaudible 00:35:41]. You start to get this feeling. And I had a friend who was in France. It became this slightly anxious thing as if it was in continental Europe. People traveling on the trains, and where this thing was spreading, the bed bugs were spreading everywhere. So it’s this issue of, were bed bugs actually making people itch in bed or was it really the source of… You can get sores and so on.
I have a friend I see who came back from Venice. And she said, “I’m convinced we’ve come back with bed bugs.” They did a search and they couldn’t find any bed bugs. So it’s this issue of the nocebo effect. Is it a case of, it could be social contagion sometimes where we’re reporting things. It’s a social effect, sort of conformity to believe. We’re picking up beliefs and we’re communicating them to others. Or it could be nocebo effect too causing these issues. Or it could be some sort of misattribution. There’s a variety of things going on here, which makes it a fascinating topic, but a really tricky one to disentangle.
Dr. Weitz: Yeah, especially…
Cosima: And I think Steinkopf also… Sorry.
Dr. Weitz: Go ahead.
Cosima: Maybe just to add, Steinkopf also very nicely shows that the placebo effect itself is something very human and evolutionary, adaptive, right? So we show signals for example, when we have placebo effects. When I’m in pain, because of a nocebo, I show signals. And this is like a signal theory of other people responding to me. This is actually an adaptive thing that is happening. But it can be, as shown by this example, why really was going on then, when it goes viral. That was just an add-on.
Dr. Weitz: Yeah, and adding in the information being spread over Facebook and these other social media sites, often some misinformation or information about some condition… I’m sure the bed bug thing probably had a lot to do with being how we communicated with each other. It’s easy for something like that to get spread to a lot of people very quickly.
Charlotte: Absolutely. It becomes this almost belief, conformity too. So, extracting that from a genuine cycle, biological effect, it requires a lot of ingenuity.
Dr. Weitz: Yeah, I think there’s some of this going on right now over to what extent is 5G and EMFs, what negative effects they’re potentially having on health, compared to what negative effects people perceive are happening that maybe aren’t.
Charlotte: Yeah, absolutely. There’s this bit of graffiti around where I live in my neighborhood, lots of 5G posters and everything. It creates a certain anxiety as well. And nocebo effect is one of these things that can be, anxiety can be elevated with. It’s an anticipatory response. As Cosima was saying, there’s good evolutionary reasons why we have these anticipatory responses. So yeah, it’s a preparedness for something. Signaling in whatever way that something negative is about to happen, we’re attuned to that. So, managing this in a social and a cultural level through mass media, social media, not to say anything about the doctor’s office, if you will. It’s a broader concern, what do we do from a public health perspective? How do we control messaging? It’s nocebo mind control messaging [inaudible 00:40:04]. We’re getting into politics here.
Dr. Weitz: Yeah, yeah, exactly. I tend to be a big free speech person. I think it’s a bad idea to just ban messages, take down YouTube videos that you disagree with. I think it’s much more effective to just do a better job of spreading the correct information. I think good ideas will overcome bad ideas. If you simply take down the information and hide it from people, then people will feel like there’s information that’s being hid from them. Some people will be more attracted to it, so I don’t think there’s really a realistic way of stopping people from putting out some bad information. I think the more we can get people educated.
Charlotte: Agreed.
Dr. Weitz: And how to analyze information, especially about medicine or science. And how to figure out what is a good source, a good way to understand information. That will be a better protection against bad information, I think.
Charlotte: Yeah, and education, right?
Dr. Weitz: Right.
Cosima: Education is really the word that you could also find in our book over and over again. I think also patient involvement; I think this is also why we are very much striving for patient involvement. Also in research, right? So, the more educated we are, the more we educate patients and the more we learn from them as well. It’s very important to not have this hierarchy but to rather more be of the same eye level. Then I think you can start to learn from each other.
I think for the example of 5G, what we know from placebo is that this is something that we can also bring down to the so-called Bayesian approach. The brain is always one step ahead. So we always anticipate. When you take a glass, you anticipate how it’s been put on your mouth. This is what you usually do. This is very automatic. When you learn, it’s only when you do an error. So only when something, when my coffee spreads out, this is when I learn, “Oh, I have done something wrong with me movement.” When you come to 5G, you would actually have to have a negative example of why this is not the case. This is so hard in these complex fields to learn from exams that really are a proof for you, that 5G is not harmful. And this is only so possible.
I think this is why it’s a very, very complex field. And why I really want to underline the importance of education.
Dr. Weitz: Okay, so to wrap up, especially since my podcast is devoted to health, what are some of the main messages that can be learned from both patient and doctors and practitioners on how to avoid the nocebo effect?
Charlotte: From a medical perspective… I’m going to leave that, maybe the medical side to Cosima to answer, what can clinicians do? I would say from a patient perspective, one of the things that I’ve been interested in, in my research in digital health is online record access. As we know in the U.S., the 21st Century Cures Act, patients can get online and read their medical records. They can see test results, and they can see a little bit of the… They can see the narrative.
Dr. Weitz: A little bit, to some extent, yeah.
Charlotte: Well, doctors shouldn’t be hiding this stuff, that’s the point.
Dr. Weitz: But we’ve also created this big mess, when we set out to set up medical records, we decided, oh the free market is going to fix this. So, there’s a thousand different companies offering a thousand different online systems that are not compatible. We should have I think, made sure that everything was built on a compatible platform so that if you go to see a doctor at one hospital, and you see a doctor at another hospital, those records are not shared, they’re not compatible. What gets on there is somewhat limited. Part of it is time. Part of it is other things. So, we might get an x-ray, they don’t put the x-ray on your medical records. You might have the doctor’s note about the x-ray, that’s about it.
Charlotte: Right. This is a whole other podcast that we could do.
Dr. Weitz: I know. I know. I know. But it’s too bad that the medical sharing is…
Charlotte: The lack of interoperability between all of these systems. It’s chaotic. But what’s really interesting there is, when you offer patients access, one of the things that they report benefits in, are understanding the medical information better, including side effects of medications. So, this is a perfect vehicle. It’s a perfect storm for increasing nocebo effect.
I guess from a patient perspective, I would say if you don’t… I mean, it’s really about the individual’s preferences. If you don’t really want to know… This is something that I have actually have incorporated into… If I don’t want to know this, I can not want to read the side effects sometimes, minor medications. I mean, if it’s a bigger procedure, you want to know. But for certain medications, I just don’t read, I don’t engage because I don’t want to tempt my own underlying cognition to lead my astray into a whole set of problems that I don’t need in my life. So I always park it there. That’s my own lived experience, if you will. There’s so much transparency now in healthcare that nocebo effects could be elevated.
Dr. Weitz: Yeah, you have that chapter on cancer where you mention that patients can go into their doctor and tell the doctor how much they want to know ahead of time, before the doctor just tells them.
Charlotte: Yeah, that’s another strategy. You’re strengthening the relationship with your doctor too because you’re letting them know what it is you want to know. And that can change, and it can change in a relationship with an oncologist as well, where you decide perhaps at the beginning you don’t want that. Your decisions may change over time about how much information you want, and when you want it.
Dr. Weitz: What do we know about the medical legal aspect of that, like if a patient says, “I don’t want to know all the consequences of this medication.” Or, “I don’t really want to know what my likelihood of dying is.” And then some legal situation holds up after that, is the doctor protected?
Charlotte: I’m not a medical lawyer. I would want to weigh in on this. So I’m going to stay clear of this.
Dr. Weitz: Right, I know that. But that’s an issue that I could see making this situation complicated.
Cosima: But maybe I think it’s so important when it comes down to, besides the legal issue of course, empowerment, right? I think this is what shows really, outlines how important it is to, when you give the patient an empowerment, I think then this eye-level relationship happens. When it comes to the clinician side of things, this eye-level relationship is of course something where I would say, this is what we can summarize from today, that we have a relationship that is trust based. And again, with this empowerment, we also heard that the information the way the framing is given is so important, to frame it positively or negatively. This is actually also something where I would say this is hands-on very easy, the way you frame something, right? I think that the third thing is about expectations, what we have heard. So, how can I look, the way I frame it, creates positive expectations? I think information, education, patient/physician relationship are three core elements of clinical practice change in the way that nocebo effect can be minimized.
Dr. Weitz: Right. Okay. Thank you very much for this important discussion. We’ve brought up as many questions as answers. But that’s important to start thinking about this. I think both patients and physicians can reduce the risk of nocebo effects by patients can tell their doctor what they want to know. And limits to which they want to hear negative information, and doctors have to find ways to correctly inform the patient but frame it in a way that there’s some emphasis on the positive aspects of it. I think you mentioned in the book somewhere about a doctor explaining to a patient who most likely is going to die from a treatment, but frames it in a way that I think 25% of the patients improve. And we’re going to do everything to make sure that you’re in that 25%.
Charlotte: Yeah. And that’s critical to subsequent health behaviors too.
Dr. Weitz: Right. Yeah, good. Okay. Great. Everybody needs to go buy the Nocebo Effect book. Is it on sale now?
Charlotte: To pre-order, yes.
Dr. Weitz: Okay, pre-order.
Cosima: I think it will be 19th of March.
Charlotte: 19th of March, yeah.
Dr. Weitz: Okay. And it’s going to be available everywhere?
Charlotte: I know it’s available on Amazon. Beyond that, I’m not… It’s Mayo Clinic Press, which should be available on Mayo Clinic’s website too.
Dr. Weitz: So the book is the Nocebo Effect: When Words Make you Sick. Okay, thank you.
Charlotte: Thank you.
Cosima: Thank you very much. Thank you.
Dr. Weitz: Thank you for making it all the way through this episode of the Rational Wellness podcast. For those of you who enjoy listening to the Rational Wellness podcast, I would certainly appreciate it if you could go to Apple Podcast or Spotify and give us a five-star ratings and review. That way more people will discover the Rational Wellness podcast.
And I wanted to let everybody know that I do have some openings for new patients, so I could see you for a functional medicine consultation for a specific health issues like gut problems, autoimmune diseases, cardiometabolic conditions, or for an executive health screen, and to help you promote longevity and take a deeper dive into some of those factors that can lead to chronic diseases along the way. That usually means we’re going to do some more detailed lab work, stool testing, sometimes urine testing. We’re going to look at a lot more details to get a better picture of your overall health from a preventative functional medicine perspective. So, if you’re interested, please call my Santa Monica, Weitz Sports Chiropractic and Nutrition office at 310-395-3111, and we can set you up for a new consultation for functional medicine.
I’ll talk to everybody next week.
