
Show notes
The suffering is real, but the source may not be what you assume. That's the essence of the nocebo effect, the placebo effect's evil twin. As neuroscientist Dr. Helen Pilcher explains, illness is not simply a matter of biology. Our thoughts, conscious or otherwise, can make lead to symptoms in unexpected ways. Previous Episodes How Minds Change Dr. Helen Pilcher This Book May Cause Side Effects David McRaney’s Twitter David McRaney’s BlueSky YANSS Twitter YANSS Facebook Newsletter Patreon
Highlighted moments
the nocebo effect is when our thoughts, our expectations, our beliefs can have a negative impact on our health, can create symptoms, can exacerbate symptoms, can make symptoms hang on and be frustratingly difficult to get rid of.
“When people have a placebo painkiller, for example, their levels of pain don't just go down subjectively. You can do brain scans and see the areas that are related with pain processing lighting up. You can see that they are releasing pain-killing molecules inside their brain.”
“the man didn't die from cancer. He died from believing he had cancer.”
“25% of people who have started their chemotherapy treatment sure they feel sick during and after it 25% of them have that same nausea before the treatment starts”
Transcript
The Nocebo Hesitation
0:00You can go to kitted, K-I-T-T-E-D dot shop and use the code SMART50, S-M-A-R-T five zero at checkout, and you will get half off a set of thinking superpowers in a box. If you want to know more about what I'm talking about, check it out, middle of the show.
0:30Welcome to the You Are Not So Smart Podcast, episode 346.
1:00A few years back, Helen Pilcher, a PhD neuroscientist and a great science journalist, was diagnosed with cancer. She's okay now. She did all the things a person must do and is today free and clear. But back then, soon after her diagnosis, she did what you would do, what I would do.
1:31She typed the name of her cancer, the type of it, into a search bar. And then she did something I don't think I would do and probably you wouldn't do either. She hesitated.
1:53With her fingers hovering above the keyboard, she debated whether it was a good idea to leap into a rabbit hole, to learn as much as she could, as best as she could, while sorting through the information, the misinformation, the disinformation, the comments, the videos, the articles, all of that stuff.
2:20And she hesitated because a few decades back, two decades back, she had written an article about the nocebo effect. During this hesitation, she had something that most people in her situation don't have.
2:55She was a doctor of neuroscience who had the knowledge obtained from writing a cover story about the nocebo effect in a respected science magazine. And to write that story, she had read all the studies, all the studies available at the time, into the real actual phenomenon because there weren't that many yet. So that research that I read 20 odd years ago has grown exponentially. Now it's very difficult to read all of the papers on the nocebo effect because there's so many out there.
3:27So there's all of this actual evidence about what it is and how it works and who is affected and why we need to care. So two decades later, sitting there with this cancer diagnosis, Helen is wondering if she should risk a flirtation with the nocebo effect, this thing that she once wrote about and at the time had read every study involved in making sense of it. And while she's considering whether or not to hit enter on the keyboard, she's thinking, surely by now, there must have been many more studies into this strange,
4:04real and strangely real biopsychosocial phenomenon. But at that moment, she didn't know and she decided not to risk it. Why would a scientist do such a thing? Well, that's because the early research into the nocebo effect had revealed some really spooky, eyebrow-raising, worth-an-article-a-new-scientist outcomes. In the early research, people could experience symptoms from just thinking about the symptoms that an illness might produce.
4:41And anyone who adores the scientific method, anyone with a healthy skepticism rooted in evidence-based science and research could understand, with the stakes as high as they were in that moment, the kind of anxiety and fear Pilcher was experiencing when considering, should I tempt evoking the nocebo effect?
Defining the Nocebo Effect
5:10So the nocebo effect is when our thoughts, our expectations, our beliefs can have a negative impact on our health, can create symptoms, can exacerbate symptoms, can make symptoms hang on and be frustratingly difficult to get rid of. Here's an example. If you have two groups of people and you tell one that an upcoming medical procedure will be extremely painful and you don't tell this to the other group, the group expecting the pain will actually, in their brains, at the level of their neurons,
5:41their nervous systems interacting with all the other systems in the body, generate a subjective experience of increased pain. They will experience more pain compared to the control group. It will hurt more because they've been primed to expect it will hurt more. When people have a placebo painkiller, for example, their levels of pain don't just go down subjectively. You can do brain scans and see the areas that are related with pain processing lighting up.
6:19You can see that they are releasing pain-killing molecules inside their brain. Spooky. But to be clear here, we are talking about subjective experience, symptoms. The early research into the nocebo effect found this wasn't just people's imagination. It was physiological. It wasn't well understood, but it also was not magic.
6:51And the way I like to think about this is to frame it like so. Imagine you are about to attend a party. You are at a stranger's door and they tell you that, just to let you know, they have a big dog and that giant dog has bitten people before, but not in a long time. They'd appreciate it if you just played it cool, used a soft voice, let that dog get to know you before you barge into the room. If you heard all this, you'd likely feel anxiety.
7:22You would feel apprehension. If you've had terrible experiences with dogs in the past, you might experience all manner of terrible emotional responses. The neurotransmitters contributing to that would start flowing. Their effects on your body would begin to build in intensity. But all that has actually happened is that someone has said something to you. It's all words, words that, thanks to your prior experiences, thanks to your language processing systems,
7:53these sounds that are being emitted by one organic meat vessel that are being received by the other one, thanks to the vast machinery of the mind, it's all led to physical changes in your body. And the dog might not even exist. So, knowing all of this, Helen Pilcher, the neuroscientist and science journalist, hesitated to initiate a chain of processes like these. The doctors diagnosed her with cancer, she contemplated using a search engine to better understand her diagnosis,
8:26and instead of hitting enter on her keyboard, she contemplated what might happen if she did. Is there the possibility that learning information about the prognosis of my particular disease, good and bad, and somewhere in between, because you can read so many different things on the internet from so many different sources, could reading about that actually influence my prognosis?
8:58So what did Pilcher do? Well, instead of jumping down that rabbit hole, she decided to jump down a different rabbit hole. Instead of reading about her cancer, she read as much research as she could find, all this research that had been done over the last 20 years, into what might happen to her if she did read about her cancer. And then she wrote a book about all that. It's a book about the nocebo effect, and its title is, This Book May Cause Side Effects. And that is about as far down the nocebo rabbit hole,
9:31I think, that anybody has ever gone. And I found some really super interesting science there. But as I say, you can't get into that lightly. That's the end of the conversation. No, of course not. No, I totally understood. What did Pilcher find out? A lot. It turns out scientists have added a tremendous amount of evidence to our understanding of what is going on when a person experiences what, for now, we refer to as the nocebo effect. And we'll get into all of that in just a moment. I just want to give Helen Pilcher, who is a science journalist and a scientist,
10:02a hardcore, rational, skeptical, scientific method-loving, epistemologically sound human being, I want to give her a chance to tell you where she was in her thinking before she started this project. I don't think for a second that thoughts or beliefs can cause cancer. You know, the causes of cancer are fairly well established. We're talking changes at the DNA level. Right. So I'm not trying to say anything controversial. But what I was interested to find out is, could the thoughts inside my head,
10:33from what I read, what I collect, what I amass about my own personal circumstances, could that trigger a biological cascade in my body, perhaps through the systems that control stress, maybe through the systems, maybe through the immune system, maybe through the interaction between all of these things. And suppose there was a cancer cell lingering somewhere still in my body.
11:03I don't know. There might be. So suppose the cancer is there and it already exists. Could it slow or speed it? Or would it have no effect at all? Right. And how far can we get to answering that question? And it turns out that there are people who are thinking about this. And as I say, I'll get to that. But to get to answer that question, so the whole book builds to answering this question, along with other stuff, you first need to like back up about,
The Placebo Effect Baseline
11:35you know, several dozen steps and go, what do we know about the effect that thoughts and expectations can have on our physical health? And most people, like a good place to start is the placebo effect, right? Because most people have heard of it. So the placebo effect is when thoughts and expectations can have a positive effect on our health. And the placebo is the most widely tested medicine, in inverted commas, in the whole world, right? Because every time there is a clinical trial for a new medicine, take a bunch of people,
12:07half of them get the drug or the new thing they're testing, half of them get a placebo treatment. So an identical looking tablet with nothing in it, because you need like to make comparisons. You need to prove that this new thing is working or not. And what happens is that it's not an inert baseline. People taking placebo tablets for all sorts of things get some degree of improvement from it. And the reason for that is that because maybe they think they're in the experimental group, right? Maybe they think they're taking the genuine drug and the expectation of improvement is there.
12:40And that's had some effect on their biology. Or maybe just the ritual, and this turns out to be true, maybe just the ritual of taking a tablet, because that is culturally really significant to us. Maybe the ritual of taking a tablet sometimes, independent of what's in the tablet, can have a positive effect on our bodies too. So that's the placebo effect. It's super cool and super interesting. And there has been a lot of research done on it. And we know, for example,
13:10that when people take placebo tablets, it can bring benefits. It can improve depression, IBS, Parkinson's disease, which is an interesting one, because that's neurodegenerative. Placebo treatments can have an effect in Parkinson's disease and bring measurable changes. So alter levels of biological molecules. And it's wrapped up in our cultural expectations. So we have certain beliefs about the potency of medicine.
13:41So they found that if you take two placebo tablets, it works better than if you take one. If you take branded placebo tablets, they work better than generic placebo tablets. And placebo injections, because we think injections are really potent and strong, work better than placebo tablets. And they've even done placebo surgery for certain things and found that for certain conditions, massive caveats and restrictions on this, that for certain conditions, placebo surgery can actually work sometimes.
14:14People who've got problems with their knees might benefit from it, for example. So that's the placebo effect. And most people have heard of it and people are quite disparaging of it because it's not real. It doesn't really matter. But actually, the placebo effect is this little bit of healing that we get for free with every single conventional tablet or medical procedure that we have because we believe in it and we believe in the ritual of medicine. It's not something that is like a nuisance in clinical trials, although the people who design those things might think that. It's actually something that we utilize every day without realizing it's part of every medicine.
14:50It's when a mum kisses her kid on the knee when they've got a graze and you start to feel better, you know? So that's the placebo effect. Loads and loads and loads of interesting stuff. And depending on how you frame things, you could go up a level in magnification or texonification and see these as two examples of the same general phenomenon. And in moments like those, I like to trace the etymology of the words themselves just to see how they diverged culturally at some point.
15:21The word placebo comes from Latin, meaning roughly, I will please. And the word nocebo uses that same Latinate phrasing and translates to, I will harm. And you can imagine whatever produces the effect is suggesting to you that this is the promise it is making. The similarity here is the promise, the expectation. And as Helen Pilcher will explain after this break, depending on your experiences and knowledge and social environment
15:54and norms and everything in between, your expectation that an upcoming experience, be it a surgery, what happens after taking a pill, what happens in your body, should you be diagnosed with an illness, all of it. If the promise can be reduced in your mind to, I will harm, the impact is much different from that which promises, I will please. All that after this break.
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19:33on top of receiving a set of thinking superpowers in a box. Check all of this out at kitted.shop or just click the link in the show notes. And now we return to our program.
19:54My name is David McRaney. This is the You're Not So Smart podcast. And now we return to our interview with Dr. Helen Pilcher, a neuroscientist who wrote a book about the nocebo effect. And the title of that book is This Book May Call Side Effects. We are aware of the placebo effect is what I'm hearing you say. And every medical trial involves placebo. We have an enormous amount of data about what the placebo effect is.
Voodoo Death and History
20:21The nocebo effect, besides just being a fun thing to say out loud, that is a fun word in every way. It sounds like somebody made it up. It sounds like somebody, a non-scientist person. It sounds more like doom scrolling or something like that. It sounds like a neologism that came out of slang and pop culture.
20:42So I'll release you back into the wild here, helping us explain all this. The nocebo effect, it feels like it's the direct opposite of placebo or it's some strange cousin. Let's go from there. On the term nocebo and placebo, they're both Latin derived. So placebo means I will please. Nocebo, it's evil twin. The dark side means I will harm. So it's like really deliciously dark. I love the idea of just walking in a room and it's going, nocebo.
21:14And then- I'm watching them all fall over. One at a time. I don't even have to do anything. I'm telling you that I will do it. That's enough. Thanks to the nocebo effect. Well, again, I'm going off on a tangent here, right? And I will come back to the original thread. Following on from that, right? One of the first things that I ever learned about the nocebo effect. So this is going back 20 years. When I was interviewing, I think I've been a science journalist even longer than you have. I have been around a while. And I remember vividly the first conversations
21:45that I had with people about the nocebo effect. And there was a really wonderful man who sadly has passed away, an American doctor called Clifton Meardor. And he told me some really wild stories about it. But he was like, you do know that this is potentially the mechanism behind voodoo death. And you just pause there and you take a beat and you go, voodoo death, right? And he goes, yeah, because this is a thing. So the first chapter in the book looks at voodoo death, right? And I mentioned this because the reason I put it
22:16in the book is because it's super interesting. And I figure if you can persuade people that voodoo death historically has been a real thing and that it really affected people and it could sell people like us joking, going, yeah, walk into a room, go nocebo, everybody falls over. That there's something incredibly potent about this. And if you can persuade people to swallow the idea of nocebo in the context of voodoo death, everything else becomes an absolute walk in the park after that break. So I thought, all right, tackle the big one first.
22:46And you start digging into the anthropological literature, which I did. And you find there are verified reports from places far away, in different parts of the world, going back hundreds of years, where there were shady, shaman-like figures who put curses on people and told them they would die. And then they did, right? And so this could be coincidence. This could be that maybe they had like a medical problem anyway and they were going to keel over. But I was interested to go,
23:18well, okay, well, what could the mechanism be here? If you're prepared to believe that there may be some causal link, because you can't do a clinical trial of a voodoo death. You know, people get cursed half day. We can't do that. So there's some ethical concerns here, yes. Well, possibly, yeah. So, but, you know, okay, so how far can we get? And you start looking into it. And first of all, what you find is that these reports of it happening seem to be genuine, that they happen in places and times where cultures had a, and this comes back to your earlier point
23:49about things being culturally specific, well, cultures had a really, really strong belief in the power of shaman, in the power of alternative magic.
23:59People would have known other people who would have been subject to curses. And when all these kind of forces align, it can make people who believe in this stuff really very vulnerable. And, and I kind of looked into it and you go, well, hang on, there are some potential mechanisms here. The potential mechanisms being, we talk about chronic stress. This is like acute chronic stress if this happens. And this is, you know, simplifying things massively, but you can imagine a situation
24:30where the release of noradrenaline as part of the stress cascade becomes so intense and so large and so sustained that maybe in people who are older, who are immunologically compromised, who have some predisposing heart condition, maybe, maybe that's enough, right? Maybe, maybe that is enough. And the book kind of explores that as the ultimate Naseba effect. But let me tell you another story off the back of this. So the same guy that talked me through voodoo death 20 years ago,
25:00he told me a story that he knew from the 1970s. So in the 1970s, when I was growing up, obviously we didn't have all this technology that we have. Medical files were on scrappy bits of paper and they were put in folders and stuff. And Clifton Meador told me the story about a man that he called Sam Schumann. It was an alias, okay, for confidentiality.
Belief and Terminal Diagnosis
25:25Now, this guy was diagnosed with late stage terminal esophageal cancer. So cancer of the throat, basically. And he was given three months to live. And he obviously, as you would, took the news very, very badly. And three months later, he was dead. And then when they performed the autopsy on him, they couldn't find any cancer in his esophagus at all. He had like a tiny tumour in his liver, but it was really quite irrelevant. It wasn't enough to kill him or do him any harm. He'd been living with it quite successfully.
25:56So the cancer that was meant to have killed him was not there. And what they think happened was that medical records had got mixed up and somebody else's test results had got put in his folder. A doctor had picked up the test results, given him the news, and then he bought into that prophecy. So I had this beautiful quote from Clifton when he told me about this. He said, the man didn't die from cancer. He died from believing he had cancer. So then you can start to see parallels between these curses from places
26:27in different periods of time a long way away and what might be happening in medicine where we hold the words of medical professionals in such veneration, where we know people who have had cancer and sadly passed from cancer. You know, again, I had this ringing in my ears when I had my own cancer diagnosis. It's like, well, the thoughts that we have about cancer and the way it triggers you to feel and the people around you to act and the way that you're treated.
26:59Do I need any of this in my life right now? The answer is no. And that story of Sam Schumann, that's one person, right? You can't go drawing. We must be sceptical. You can't go drawing big conclusions from this. But what I would say is that I've spoken in the course of researching the book to a lot of oncologists and they will tell me that very often they see patients who, when they go through really serious physical declines, cancer patients, they seem to be more related. The degree of progression,
27:29the degree of decline rather, seems to be more related to their state of mind than it does their physiology. So, sorry, I've taken this on a huge... No, this is exactly where I want to be. This is good. Tangent there because you go, well, hang on a minute, the medical profession today, wow, they've got a real responsibility here because what they say matters. What they say potentially has an effect on us that is independent of whatever disease or condition we have. And bring it back,
27:59looping back to the beginning of the conversation, we were talking about testing placebos in clinical trials. And in clinical trials, everyone gets the same information, right? So nobody knows if they're getting the placebo or the real drug and to keep everything like equal between the two groups, everyone gets the same information. So that includes being warned about any particular side effects. So in clinical trials, you get these two weird things that happen. The first is people on placebos get better. And the second, and this is the crux of the book, and this is why the book is called This Book May Cause Side Effects.
Side Effects from Placebo Pills
28:30The second thing that happens is that people taking placebo tablets, tablets with nothing in them, develop side effects, nausea, headaches, dizziness, maybe rashes, and, you know, loss of libido, you name it, think of any side effect. You can find it in a clinical trial where people have taken placebos. And we see this again and again. And that is because
29:01there is this cultural expectation that when you take a medicine, some medicines cause side effects and then you get warned about it, that expectation becomes strengthened. And then you go, well, hang on a minute. And this is kind of like the next conceptual leap that I took when I was writing the book. You go, well, hang on a minute. We have expectations about medicine. So nothing to do with clinical trials. These same expectations about side effects and being warned about side effects when you go to see your doctor and you get a new tablet
29:32and you might get warned about side effects, you might get an information leaflet. It's the same thing, right? There is a portion or a part, a component of the side effects that you may develop that may be due to the drug itself. But there is a portion and it's quite difficult to disentangle it in the real world that is caused by your expectation. I will never be able to ask you all the... The squirrels are loose in my mind and I want to go... I'll never catch them off. One thing that pops in my head
30:03very immediately is it's the literature and poetry and the cinema we've been exposed to. We're willing to imagine a person entering into a deep depression and imagining a forlorn life. We can feel that you can be in isolation, loop yourself into a state where it's all happening on your side of the thing. It's just you in a bed on a couch and looping yourself
30:34into a very bad place and it's all on you, right? You can feel that and it's like something affected you but everything else is happening through emotion and thought.
30:43I think there's something here where we feel a little... We feel a lot more agency there because we know we're doing it and we can tell it happened. Like we know where it came from and there's the thing with placebo and nocebo that I... That's always made me wild with like the part that like makes me feel so strange about it is there's a lie in here. There's an illusion here. I'm lying to myself. Somewhere there's something where what I think is happening is not what's happening. Like the suffering is real but the source
31:14is not what I think it is. Like we've done actual research into the nocebo by itself and as you were alluding to earlier we've looked at the brain and saw no, the real systems involved in this thing are really doing things but I couldn't right now just sit here and very carefully say I wish to produce these neurochemicals and therefore ah, I feel great. I wish to produce these neurochemicals and ah, I feel terrible. Like I don't have that direct access to these the machinations
31:44of my neurochemistry in that way, right? I don't even like I don't understand it. You couldn't allow me give me a piece of paper and a pencil. I'm not going to be able to draw these molecules or I'm not going to I don't have any ability to make sense of this or articulate it yet if I'm in an expectation environment that's strong enough if I have enough priors built up of which I'm not even aware most of the time most people have no idea this is happening either. I'm in this space
32:15and I have all these expectations and I have all these beliefs and values and attitudes and all these this gigantic biopsychosocial sphere of things influencing me and affecting me and expectations and so forth you give me this thing and it could make me go oh, my belly hurts and I would actually vomit or I go oh, I don't feel so good oh, I'm glad I took that pill I feel great now and I actually am experiencing less of the pain sensation as if I had taken
32:45a pill that would mess with those receptor sites and such it's the lie of it it's the illusion of it that blows my mind and it's the lack of agency in any direction and I just want to hear anything you have to say about that I have I don't really know what I'm asking except this blows me away in a way that I just feel so oh, I don't understand the world nearly as much as I thought I did and there's something here you know let me tell you some things that I think will blow you away so one of the and there are you know you can go in lots of different directions but returning to this idea
33:15that drugs can cause side effects in the real world that are not caused by the drug that are caused by your mind now I'm arguing that actually that that is part of the side effects to everything that we take but here's a really clear example so when people who have cancer have chemotherapy the drug genuinely genuinely causes genuinely causes some really horrible physical side effects that are caused by the drug so that the nausea that people get that is that is
33:46beyond anything that you can imagine is because the drugs are targeting dividing cells in your gut and there are changes in your gut this is this is physical there is a physiological reason going on here but right here's the thing
Anticipatory Chemotherapy Nausea
34:0225% of people who have started their chemotherapy treatment sure they feel sick during and after it 25% of them have that same nausea before the treatment starts so sometimes it can be in the minute before the drip is connected sometimes it can be the day before sometimes it can be in the journey on the way to the hospital sometimes it can be years after they've finished their treatment
34:32and they drive past the hospital they get that same nausea now that can't be caused by the drug right because the drug hasn't gone in at that point the drug is nowhere to be seen and this is called anticipatory nausea and it's a really I think poignant and startling example of the Nacebo effect because here is something where you didn't consciously think that into existence instead you know you're talking about predictive processing your brain quietly learnt the association between this
35:03drug making you feel vile and then it linked in all these other associations so seeing the treatment room taking the bus to the hospital and those associations became so tangled up in your brain and they became so powerful that you didn't need the drug in the mix to trigger those really really genuine side effects so you said you know the suffering is real but the source is not where you think it is and I think that's the really really important thing here because
35:33whenever the Nacebo effect is out there right it affects all of us from the day we are born to the day that we die we have evidence for this it is part of our everyday lives it is woven into our lives it's part of the suffering we experience in any illness that we have it is there but because it's kind of woven through everything else it's very hard to disentangle and so the way I kind of think about it is that with any
36:04symptom that you have if you think about and again you can't really separate this into proportions but in the example I just gave you with the anticipatory nausea and the chemotherapy that's entirely processes in your head that's doing that and then by the time you take the drug I would argue and I'm spitballing figures here I would argue then that the symptom is maybe 90% physical and 10% mental but the point is there's this
36:34real pushback out there from people who if you can't find a physical cause for a symptom people don't feel they're being listened to they feel that their suffering is not validated they feel they're getting the brush off so we culturally have arrived at a point in our society here where if you can't find a physical cause for a physical symptom it's psychosomatic and although that term actually is meant to mean okay this is kind of like the
37:05brain and the body knitting together to cause these things people hear that as a real negative they hear that as you're imagining it you're crazy and I think one of the most important things that we can do is almost and this sounds counterintuitive it's almost welcoming and going I get it right I get that this symptom I've got now some of it might be being caused by the interaction between my brain and my body and actually that's not just like an irritation that puts you
37:36in a really powerful situation because it means that there's a portion of your suffering that you actually do have more control over than you think you might we can come on to how you might deal with these things in a bit but I think it puts us in a position of power but I think one of the most difficult things is and I'm not saying changing the conversation it's starting a conversation where we're prepared to admit that human suffering is that there is no distinction between mind and body right that we have created this artificial
38:07distinction that the mind is from the neck up and the body is from the neck down and they don't talk to each other and physiology science biology tells us that's not true and I'm going to take you on the best tangent ever now please this is one that I found out after I finished writing the book and I love it so
Renal Descartes and Dualism
38:23René Descartes French philosopher the guy who famously obviously kind of like spoke up for the idea that mind and body are separate so you know we call it Cartesian dualism that the mind and body are made of separate stuff they can't interact they're totally different right and he clung on to this idea doggedly through life and it follows us down today into the modern medical system where I think doctors spend much more time trying to understand pathology than they
38:53do people right now when René Descartes died he was buried and I might be getting the location wrong but I believe he was buried in Sweden now at the time about 15 years after he died his body was dug up it got moved to France and at that point and nobody knows why this happened there wasn't a particular reason for it but his head and his body became separated and now if you want to go and pay your respects to the great
39:24man right you can go and see his body so his torso and his arms and legs which are in one chapel in the centre of Paris and his head is in the Museum of Natural History on the other side of town and I may not agree with his fundamental premise but I have to admire his persistence in his hundreds of years he's literally still banging the same drum and I love
39:55that I do too he got his wish from beyond the grave you know it's like let it go mate let it go the idea is to be have over and do you know what I would love to do I would love somebody you know with proper authority to go and collect his head collect his body put them back in the same grave and then see if he turns in it I want
40:35to address something because we will run out of time if I don't which is like let's go to the other side of this which is there are people who are not skeptical of this sort of thing we have a nice resurgence of whatever however we like to conceptualize or categorize it there is in the United States we have the Maha movement that we're having to deal with which are just health influencers who are saying medicine is a lie and everything's placebo basically is what
41:06they're trying to say and that mind is more important than medicine and there are many different ways to come at it but they seem to be suggesting look at some of these studies let's cherry pick some of this evidence and say look all you need to do to heal is think good thoughts look at the evidence for all the things we've just discussed they will cherry pick this and say all you have to do for health is to think
41:37positive thoughts and live a nice clean life and you don't need all this stuff this is I can imagine someone from that world saying look at this book it proves what I'm trying to say and they won't have read your book but they can highlight the parts that seem to support their arguments so I'm wondering from where you're sitting how do we address we've talked about the skeptic side of things and this is real we're learning how this works and
42:08all you have to do is think about in terms of steps and how powerful expectations are we can get there on the other side though we can over correct and I'm wondering what do you have to say about that side of stuff yeah I
Science Versus Wellness Misinformation
42:39most vulnerable people that will suffer as a result and you know for the powers in be if you want to set up an experiment where you stop vaccinating populations just look and see which diseases rebound and how much suffering comes from that we have without doubt hard evidence about the causes of certain diseases and what works to treat them right and my book is not anti science and it's not anti medicine and the last thing I would want anybody ever to do
43:10by having listened to me is go oh well I'm not going to bother visiting my doctor wrong my message is if you have any symptom of any kind go and see a doctor that is where the largest chunk of evidence lies go and see your doctor have the appropriate tests if you don't feel you're getting the response that you want or you feel that something is being missed go back again be persistent do not turn away from
43:41conventional treatments you cannot right we can we can talk about what I learned about cancer but you cannot think your way out of cancer thinking positive thoughts will not cure your cancer I can say that quite categorically right there may be some tiny effect going on there and we can talk about it but you should never shy away from conventional treatment because we know that is where the evidence is we know that chemotherapy surgery radiotherapy these newer immune system related treatments
44:11for cancer we know they work and you look at the success of public health across decades and diseases that used to kill people are not diseases that do kill people anymore that are much more manageable and that's not because we're all thinking happy thoughts that's because there have been decades and decades of rigorous trials and thought processes behind the treatments that work so please don't anybody listen into this
44:41turn away from treatments what is the beer box experiment okay
The Beer Box Experiment
45:01so I in the book I read loads and loads and loads of research papers and about how to induce the nacebo effect how to actually see it emerge in real life and the take home message is it's really easy you can bring somebody into the lab you can put an electrode on their finger it's wired up to machine you tell them when you flick a green light they'll feel pain you flick the green light they feel pain but the current was never there you give
45:31someone a tablet you say this will make you feel ill even though there's nothing in the tablet they feel ill right so I wanted to do because I'm a really horrible wife I wanted to do my own experiment so my husband he got bought this monthly subscription to a beer box for his birthday so once a month this beautiful box of craft beer turns up and I was in the middle of writing the book I just had this really evil thought so
46:02he's halfway through draining the last bottle of beer and I say to him I've just had an email come through from the beer box company and they said we need to send back the remainder of the box and my husband is like why what's the problem they didn't really say but there's some sort of contamination issue going on and I look at him and he's gone really grey and he goes any more information I'm like no we need to pour it away and so
46:33basically there was no email from the beer box people I made the whole thing up but it's super super easy to put a suggestion in someone's head of nausea and make them feel nauseous and I did eventually tell him that how did he react what did you witness what did you observe in your experience well you know borderline divorce was what I observed no I think he's used to me being a pain in the ass to be honest so I think he's sort of like I
47:04didn't let him susser for too long you know but he did he did report that he had some subjective experience of nausea yeah yeah yeah no he absolutely reported subjective feelings of nausea but when I cleared the story up he felt much much better so you can have these expectations that are planted in your head but you can also have them as learned associations that you're not aware of so I have this thing I used to drink beer in my student days and I used to drink a lot like a lot of students and then I'd have a terrible hangover the next day and these days I really don't drink very much
47:34alcohol at all hardly ever and what I find now is that if I go to the pub and I have four or five bottles of alcohol free beer I still get what feels like a hangover in the morning and I think that's called something it's the immaculate hangover yeah the immaculate hangover that you don't deserve but it's decades of your brain equating late nights out this brown liquid in a pub this is how you feel the next day so I'm just going to pop that
48:05feeling in for you right now and this to me feels deeply unfair because I don't drink alcohol so you know but only when I do it in a pub which is interesting so like if I have all the context there's a you see this in the psychedelic culture too like who knows if there is anything actually on that tab who knows if that's actually psilocybin but there's always there's a a narrative there's a meme of those you know we've all seen the
48:35person like dude I'm so fucked up what did you do like it was just pencil shavings in a bag exactly is Ted Lasso a big show with you over there it is yes yes yeah so I was just rewatching the episode of Ted Lasso with my son and it was the one where they end up in Amsterdam and Ted takes what he thinks is something that's going to take him on a trip and then there's this whole big trippy sequence that follows and he comes up with the answer for perfect football in the middle of
49:05this trip and the next day goes it was a dud bat she didn't do anything to me and like all those expectations coming into place yeah you have a great phrase in the book a great title the woman who could walk backward but not forward what she's
Functional Neurological Disorders
49:25a remarkable woman she's called Miranda license and she lives in Australia and I talked to her and we email now from time to time so let me back up by saying there's a really important distinction here between illness and disease and we use the two things interchange a bit but they're not the same so illness is our subjective experience of disease is how something makes us feel disease is an objective verifiable fact right so two people can have the same disease
49:57but be incapacitated to very different levels so their illness could be very different right you know mine is a wonky but I managed to get around and swim and run from time to time my next door neighbour might have exactly the same amount of bone degeneration but be really struggling with it right so there's a difference between illness and disease and you can have disease but no illness right so you can be infected with covid but be asymptomatic
50:27you have cancer and not know about it but you can also have illness without disease so you can have illness where you can chuck all the physical tests in the world all the standard diagnostic tests something and you can't find anything physical because there isn't anything physical to find instead illness is caused by this kind of like crazy firing of neurons
50:57in our brain and this pattern of electrical activity that's ricocheting around okay so all the things we've spoken about with a placebo effect when you take a tablet and it's a placebo and it gives you a symptom you could run a physical test you wouldn't find a cause for that because it's all being generated by the electrical activity in your head now the woman who could walk forwards but not backwards Miranda license is in her twenties she was fit healthy
51:27had a new boyfriend she was working as a teacher she was budding actress and she went for a run one day she comes back she feels tired she lies down she has a sleep when she wakes up she can't walk and so it's absolutely terrifying she gets rushed to hospital they run all the tests they look for the physical stuff right they go well has she had a stroke maybe is there some neurological disorder going on here all
51:58of the tests come back negative she can't walk she can shuffle around
52:06terrifying that a woman could be transformed so quickly with seemingly nothing that's happened she was very lucky because they did realise what was going on here and there is a category of illness called a functional neurological disorder now in a functional neurological disorder you can have really serious physical problems you could not be able to walk you could be having seizures you could having dreadful
52:37migraines you could have limb weakness you could have tremors you could be blind and it's not caused by anything happening in your body it's caused by patterns of aberrant electrical activity in your brain so it's this weird kind of neurological disorder that isn't really psychology and it's definitely not psychiatry and it's not really neurology either and if people don't get diagnosed and see a specialist quickly it can delay treatment because you can get better from it and what's happening here is that for whatever reason and we
53:08don't really this is one of those questions we don't know why it happened to Miranda but for whatever reason when she woke up from her nap her brain had made this prediction that her legs no longer worked right there was that random pattern of electrical activity that generated that prediction and then her conscious brain because that was the physical reality it created her conscious brain then bought into that so this new layer of predictions in her brain start getting laid down I really can't walk I'm really struggling here everyone around her is treating her like you can't walk
53:39oh my god we need to get this fixed a really frightening situation to be it and then they realise it's a functional neurological disorder and there are ways of treating this and the way you treat functional neurological disorders is by challenging those predictions and basically showing the brain that you're kind of right but you're a little bit wrong so what they realised was that although she couldn't walk forwards she could walk backwards because when she was trying to walk forwards she was so busy trying to think about walking forwards she couldn't
54:10walk forwards but when she was walking backwards she was so busy trying not to walk into the chair behind her that she forgot to think about what her legs were doing right and when this happened it began to challenge the prediction in her brain that went my legs don't work properly because all of a sudden you go well maybe you can and a turning point in her recovery that was so interesting and really really ballsy was she worked with a physiotherapist who realised that if you want people to get better from these types of symptoms you need to challenge the predictions that their brains
54:41are making number one and number two you need to draw attention away from the problem so instead of thinking about not walking put her on a treadmill whack it up see what happens next so that's what they did and she could run on a treadmill for a while but she couldn't walk forwards and then in time that corrected the brain's predictions and because she had the specialist treatment and people who realised what was going on she got better very quickly she was really lucky she's a remarkable woman and to this day no one's really clear what triggered
55:12this for her she wasn't making it up her symptoms were real there was no disease that you could see but my god she was so ill for such a long time but there wasn't anything in her body and this is a common thing in neurology clinics this is remarkably common but not all neurologists are kind of trained and know about it and so I met a number of people I spoke to a number of people who've had these kind of illnesses and if you like it's like the nocebo effect to the extreme it's nothing that they've thought or
55:42consciously expected or done it's their brain getting things wrong for a bit and then that prediction error in the brain being corrected by people that know what they're doing and when we have part of our suffering whatever it might be with whatever illness that we have if we can start to challenge the brain's predictions if we can start to draw attention away from the things that are causing us trouble towards the periods where we perhaps feel less ill we can start to challenge our brain's predictions and
56:12start to kind of influence that portion of our illness that is the nocebo effect if that makes sense but she was she is just an absolutely remarkable woman an absolute privilege to kind of get to talk to her I can't go I can't say to you hey you can walk it's fine give it a go I have to actually force a anomaly into your processing so that the brain has deals with it like the part of you that you have no control over is going to notice a
56:43difference between expectation and reality you know we talk about prediction errors the treatment is correcting the prediction error you know that something that complicated can be resolved by something that mundane and every day I think there's quite a sort of poignant paradox that is it for
Show Credits and Outro
57:21this episode of the you are not so smart podcast for links to everything we talked about head to you are not so smart dot com or check the show notes right there in your podcast player my name is David McCraney I have been your host in those show notes you can find my book how minds change wherever they put books on shelves and ship them in trucks details or at David McCraney dot com and I'll have all of that in the show notes as well right there in your podcast player on my
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