Why Medicine Has Gone Too Far, The Problem With Getting A Diagnosis & Why Early Detection Is Not Always A Good Thing with Dr Suzanne O'Sullivan #553

Could our healthcare system be making us sicker rather than healthier? In the UK, autism diagnoses have increased by a staggering 787% between 1998 and 2018, and one in five people now has some form of mental health disorder. But what if some of our health struggles aren't diseases to be cured, but normal human experiences being medicalised? This week, I'm joined by Dr Suzanne O'Sullivan, a consultant in clinical neurophysiology and neurology at The National Hospital for Neurology and Neurosurgery, who specialises in the investigation of complex epilepsy and also has an active interest in psychogenic disorders. Her latest book, The Age of Diagnosis: Sickness, Health, and Why Medicine Has Gone Too Far, aims to challenge long-held assumptions about medical progress and change the way we think about our health. In this thought-provoking conversation, we explore: Why giving someone a diagnosis is never neutral – it can fundamentally change how a person views themselves, their body and their future possibilities How the definition of autism has dramatically expanded over the past few decades from its original concept of "extreme autistic aloneness" to now potentially including 1 in 20 children in Northern Ireland Why screening for diseases like prostate cancer can lead to unnecessary treatment The potential problems of genetic testing - when results are misinterpreted or used without proper context, especially with tests that aren't clinical grade Why early detection and treatment aren't always better, particularly when it turns healthy people into patients decades before they might develop symptoms The profound story of how Suzanne diagnosed a rare genetic condition in a 15-year-old girl, only to question whether she had actually done the right thing by medicalising someone who believed herself to be healthy This is a nuanced, compassionate discussion that challenges many of the widely held assumptions in modern healthcare and I would urge you to listen with an open mind. Throughout our conversation, Suzanne emphasises that she's not arguing against the existence of these conditions or suggesting everyone should refuse diagnosis. Rather, she encourages both patients and doctors to consider whether medicalising our struggles is always the right approach. I hope you enjoy listening. Support the podcast and enjoy Ad-Free episodes. Try FREE for 7 days on Apple Podcasts https://apple.co/feelbetterlivemore. For other podcast platforms go to https://fblm.supercast.com. Thanks to our sponsors: https://thriva.co https://drinkag1.com/livemore https://vivobarefoot.com/livemore https://airbnb.co.uk/host Show notes https://drchatterjee.com/553 DISCLAIMER: The content in the podcast and on this webpage is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or qualified healthcare provider. Never disregard professional medical advice or delay in seeking it because of something you have heard on the podcast or on my website. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:01Speaker 00

  Identifying very strongly with an illness can heighten your symptoms because it sort of focuses you on your body and it gets in the way of recovery. You know, if your illness is your identity, then how do you move forward?

• 0:16Rangan Chatterjee?

  Hey guys, how are you doing? I hope you're having a good week so far. My name is Dr Rangan Chatterjee and this is my podcast, Feel Better Live More.

• 0:29Rangan Chatterjee?

  My healthcare system in some ways be making us sicker rather than healthier. In the UK, autism diagnoses have increased by a staggering 787% between 1998 and 2018. And one in five people have now been diagnosed with some form of mental health disorder. But what if some of our health struggles aren't necessarily diseases to be cured, but rather normal human experiences that are being overly medicalised? This week, my wonderful guest is Dr Suzanne O'Sullivan, consultant in neurology and clinical neurophysiology

• 1:11Rangan Chatterjee?

  at the National Hospital for Neurology and Neurosurgery, who specialises in the investigation of complex epilepsy and also has an active interest in psychogenic disorders. Her latest book, The Age of Diagnosis: Sickness, Health and Why Medicine Has Gone Too Far, aims to challenge long-held assumptions about medical progress and change the way we think about our health. In this truly thought-provoking conversation, we explore a variety of different themes, including: Why giving someone a diagnosis is never neutral?

• 1:51Rangan Chatterjee?

  How the definition of autism has dramatically expanded over the past few decades? Why screening for diseases like prostate cancer can often lead to unnecessary treatment? The potential problems of genetic testing? And why early detection and treatment are not always better? Particularly when it turns healthy people into patients?

• 2:18Rangan Chatterjee?

  I think this is a much-needed conversation about a crucially important topic that challenges many of the widely-held assumptions about modern healthcare. And I would urge you to listen with an open mind. Throughout our conversation, Suzanne emphasises that she's not arguing against the existence of these conditions, or suggesting that everyone should refuse a diagnosis. Rather, she's encouraging both patients and doctors alike to consider whether medicalising our struggles is always the right approach.

• 3:01Rangan Chatterjee?

  You are a consultant neurologist. You've been seeing patients for over three decades now. And in your brand-new book, you're making the case that medicine may have gone too far. We may be over-diagnosing people, but also potentially turning basic human struggles and differences into disease. What's going on?

• 3:25Speaker 00

  Yeah, so, you know, I think we've had a problem in the past, perhaps, with kind of under-diagnosis and neglect. So if you say, think about special learning problems like autism or ADHD. I mean, I was a school student in the 70s and 80s. Nobody was recognised as having special educational needs then. In my class of 120, there must have been people. So we've kind of, we've neglected young people who perhaps could have done better with a bit of support. Maybe people with mental health problems were afraid to come forward. Also, people were going through doctors too late with diseases like diabetes and things. So we realised we had a bit of a problem that we needed to correct, and we've been gradually trying to correct that.

• 4:07Speaker 00

  My fear is that as we have sought out more and more patients with these sorts of conditions that we might have over-corrected now, we may be detecting and treating people that we don't really need to treat.

• 4:19Rangan Chatterjee?

  Yeah, I mean, I guess there's all kinds of conditions, aren't there, that are rapidly on the rise. I mean, I think at the moment, is it one in five people in the UK have some sort of mental health disorder?

• 4:31Speaker 00

  Yeah.

• 4:32Rangan Chatterjee?

  I mean, that's a lot of people, right?

• 4:34Speaker 00

  It's an absolutely astonishing statistic, and you have to really start asking, well, what's going wrong? Because if it's true to say that one in five people has a mental health problem, then, you know, potentially, something is going extremely wrong in the world. My question, however, is, are we sadder, or are we attributing more to mental health disorders? And I think that's the key question, is, are we actually becoming more unhappy, or are we medicalizing what we would in the past have called ordinary unhappiness? And that's kind of my focus of the age of diagnosis, is to think about what I call overdiagnosis. And I want to kind of clear up what that is at the very start, because I think it's sort of, you know, people hear politicians talk about overdiagnosis, and they immediately

• 5:19Speaker 00

  jump to this conclusion, oh, you're saying that there's nothing wrong with us. We've been diagnosed, but it's wrong, and we are fine. That is not what overdiagnosis is. Overdiagnosis means that somebody could potentially have significant struggles, but the question is whether medicalizing those struggles is the correct thing to do. And I guess I'm worried now that this one in five people who are said to have mental health problems are having genuine struggles medicalized, when perhaps maybe social change or some different sort of support would help them more than a medical label.

• 5:54Rangan Chatterjee?

  It's interesting. As I read through your book, I think, wow, this is so well-written. There's a deep compassion behind your words, but you're actually trying to raise awareness of something that is critically, critically important. And as you say, you're not saying that... You know, you're not saying that certain conditions don't exist. You're absolutely not saying that. And one of the key questions you ask is, is the diagnosis helping you? Not is the diagnosis right, is the diagnosis helping you? Why might a diagnosis not help us?

• 6:32Speaker 00

  So when I write a book, I'm writing it for my patients, you know, in a sense. I don't know if any of them read it, but I'm writing it to address things that happen in my clinical practice that I'm not comfortable with. So I start this book with a story of two people, a patient of mine who I'm calling Stephanie and her daughter Abigail. So Stephanie was a lady who I've been looking after with epilepsy for nearly two decades now. She came to me with unexplained seizures. We discovered she had epilepsy. I've been treating her for many years and I haven't been making her much better. Seizures aren't responding to treatment. But in the course of these couple of decades, I discovered that she also had a progressive difficulty with walking. Now, I couldn't find out why she had epilepsy.

• 7:15Speaker 00

  I couldn't find out why she had difficulty walking. And then one day, her husband made a chance remark that kind of made it all so much more clear. He said that their 15 year old daughter, Abigail, who was not a patient of mine or of anyone's, was teased in school for having a funny walk. And he said that she walked exactly like Stephanie. Now, I mean, you're a doctor, you know, that's the one of those moments where you think, oh, my God, you know, there is the clue that I have been waiting for that will tell me what might be wrong with Stephanie. So it immediately sent them for, to a genetics clinic, both Stephanie and Abigail. Abigail at the time was only 15,

• 7:53Speaker 00

  to investigate the possibility they had a genetic condition. It took a while to get there, but that is what they had. Now, this is sort of really an issue which, first of all, that's a diagnosis that, in a sense, as a doctor, I could be celebrated for. You know, I had found a rare diagnosis that was hard to find. I had done for Abigail what people kind of are telling me I should do, which is predict diagnosis ahead of time. So people are empowered, anticipate future health conditions so they can be addressed as soon as symptoms start. You know, it should, in a way, be a success story for my practice as a doctor. But I actually came away from that experience feeling incredibly guilty and just thinking, what did I do? Because

• 8:38Speaker 00

  If I looked at it another way, you know, I had taken a 15 year old girl who was, you know, she, she had some gait problems, some walking problem, but it was so subtle. She didn't, it didn't bother her. She was good at yoga and she wasn't good at running. That suited her fine. And I pretty much said to her, I think you have a potentially neurodegenerative problem. Now I'm going to send you for tests. I turned a girl who believed she was healthy into a patient. And I, this for me in this book is the really important point about overdiagnosis is overdiagnosis doesn't mean the diagnosis was wrong. I had found something wrong with Abigail, but what favour had I done her really? You know,

• 9:18Speaker 00

  she could have quite happily waited another 10 to 15 years for her life to be medicalised. You know, it could be that I could have changed the whole course of her life by telling her that she had this problem. You know, I could have made her feel that her body wasn't healthy or wasn't normal. I could have forced her to worry about the walking that she wasn't worried about. And I think this is really the whole point about diagnosis is diagnosis should come along to solve a problem and it should lead somewhere. But if we're increasingly giving healthy people diagnosis to anticipate futures that might never happen, or kind of burdening people with diagnosis 10 years before it's necessary, then are we really doing the right thing for those people?

• 10:03Rangan Chatterjee?

  Yeah. You brought up so many interesting points there that you would be celebrated and are celebrated as a doctor for making that diagnosis. And I was thinking about this this morning, you know, I was reflecting on your book and a lot of the concepts in it are kind of things that I've intuitively felt in medicine since I practiced, actually. I've always struggled with giving people labels. Like I always have, I can see it so clearly now. It always felt wrong, or can I say, limiting to me to do that. And I've got plenty of examples that I'll perhaps share with you.

• 10:43Rangan Chatterjee?

  But I thought about our medical school training. Everything about us as doctors, from the minute we walk into medical school, is about making the diagnosis, right? And I kind of feel that perhaps in a different era, where what was coming into to medical doctors was, I guess, largely acute problems, which responded well to, you know, oh, you've got pneumonia, here's a pill, you take this three times a day for a week and, you know, then your pneumonia is gone. Perhaps that worked, but in a lot of the conditions that we're now starting to diagnose, mental health problems being one of them, there is no clean, quick fix.

• 11:25Rangan Chatterjee?

  So there may be an unintended consequence of making that diagnosis. Does that make sense?

• 11:32Speaker 00

  Absolute sense. I mean, clearly, we recognize when diagnosis is useful. You know, if you get a diagnosis that leads to a treatment, that leads to a cure, that leads to recovery, or, you know, if we need to be able to direct people into pathways and labels and diagnoses are useful and essential. But a diagnosis is not inert. It's not just something that comes with positives or is neutral. It comes with negatives. And actually, Abigail, the 15-year-old I was talking about, said something really, you know, I met with her years later after I gave her that diagnosis.

• 12:03Rangan Chatterjee?

  What was the diagnosis?

• 12:04Speaker 00

  So she was, she had a very rare genetic mutation that is associated with a gradual neurological decline. So only like about five people in the world have ever had this mutation. So, you know, that's as rare as it gets. And you can imagine, therefore, that, you know, that a diagnosis like that doesn't bring you an awful lot because you don't have a whole community of people who you can bond with over your diagnosis. You don't know where it's going, there's no treatment. But I spoke to Abigail years later and kind of, you know, really just to kind of say, when I was writing The Age of Diagnosis, I wanted to know, I felt guilty and I wanted to know if she felt any negative way about what had happened to her. And she said something

• 12:49Speaker 00

  really interesting. She said she was a primary teacher then, and she said, you know, that she understood exactly what my concern was because she was used to seeing kids in the schoolyard falling. And if they fell down and they looked at their bodies and they saw blood, you know, they burst out crying and they'd become very distressed. But if they fell down and they couldn't see any problem, they just got up and went running again. And that was, it beautifully encapsulated my concern. It was almost like I'd pointed at Abigail's body and said, you know, I see blood. And that, you know, I was drawing her attention to things about her body that were not normal and how badly that could have gone. So that's how a diagnosis changes a person's relationship with their body. You begin, you know, if someone tells you, you've got, you know, asthma or diabetes,

• 13:33Speaker 00

  you begin noticing little things that go along with that diagnosis. So symptoms can be really reinforced by your knowledge of that disorder and the attention that you pay. I mean, I got lucky with Abigail. I mean, she was a resilient, happy, lighthearted person, and it didn't really change the course of her life. But I didn't know that when I just kind of automatically sent her to a genetics clinic with the kind of idea in my head that I was doing her a favor.

• 13:58Rangan Chatterjee?

  Let's contrast that with the family towards the start of your book with Huntington's, right? Because that was very, very powerful. So if you could just go through that, because I think it touches on so many different points, including this idea that getting medicine involved, testing early, predicting stuff, we think is always good. But I think this kind of turns it on its head a little bit.

• 14:26Speaker 00

  So I mean, I, yeah, I started the book with the story about Valentina and Huntington's disease, which I know is not a disease that will touch a lot of people's lives. For those who don't know, it's a neurodegenerative condition, very unpleasant to have and to see in a loved one. It causes psychiatric symptoms, cognitive decline, and eventually a physical decline. You know, over several years, a person will end up in a position where they can't swallow, they can't speak, they can't walk, and there's no cure or treatment. It's also a genetic condition. If your parent has it, you have a 50/50 chance of being affected. So Valentina, she's in her 40s now, but when she was 28, she was pregnant with her first child and she discovered her mum had Huntington's disease. I mean, you

• 15:08Speaker 00

  can imagine the devastation because that discovery immediately meant that Valentina went from being a perfectly healthy young person to having a 50/50 chance of having a neurodegenerative disease. And her unborn child went from being absolutely perfect to having a 25% chance. So it was devastating news for her to get.

• 15:28Rangan Chatterjee?

  So this is not even her being diagnosed. This is her mother being diagnosed, automatically changes her perception of herself, her life, and her child.

• 15:38Speaker 00

  It just completely changed her personality and her wellbeing overnight. And there is a genetic test that can be done for Huntington's disease, and it might seem a little counterintuitive to people, but she decided not to have it. That's a really common choice for people in her position, because people understand that if you go and have the test and it's positive, well, that will change your life forever. So most people with Huntington's disease, risk of Huntington's disease, don't have the test because they want to believe that it can be negative. A life lived with the hope that the test will be negative is more productive than a life lived with a positive test. So Valentina didn't have the test.

• 16:22Speaker 00

  Essentially, she decided, listen, I'm having my first baby. I want to enjoy being a mother to this child. And then she went on and had a second baby and she did enjoy her life going forward. But she she would say that, you know, her whole personality had changed. She went from being a really happy person to being a person with constant kind of anxiety. She said at the happiest times, she had like a specter of Huntington's disease was always sort of hanging over her. And then it got worse because then she started noticing she had the symptoms. So she'd seen what happened to her mother and she began noticing she had the same symptoms. Her personality was changing. She was angering easily. She was tripping over things. Her coordination goes, she was bumping into things. If she went to an airport, she couldn't multitask. She just got flustered.

• 17:07Speaker 00

  And this was sort of progressing as the years passed. And she kept putting off testing because she wanted to bring up her children without the worry of the positive diagnosis.

• 17:19Rangan Chatterjee?

  Even though she was worried.

• 17:21Speaker 00

  She was so worried, but she realized you've got to understand the implications for the family. Let's say she goes and gets the test and it confirms her worst fears. Then suddenly her 14 year old child has gone from having a 25% chance of having Huntington's to a 50% chance. So, you know, it changes the whole family for her to get that positive test. And basically it would also, the geneticist advised her, you know, if you get that positive test, you will begin seeing your whole life through the lens of of impending Huntington's. So with collaboration with her genetic counselor, she put off the test until she got to a point where she felt so symptomatic, she just thought, you know, at this point now, you're nearly 20 years later.

• 18:04Speaker 00

  Her kids are 18, 19 years old. And she finally said, things are so bad now, I just have to bite the bullet and admit this to myself. And she went and had the genetic test. It was during COVID. And she turned up at the hospital and for the result. And she watched the geneticist come down the corridor with a mask on her desperately trying to read the the expression on her face and couldn't because of the mask. And then they went into the clinic room and the geneticist, I almost never tell this bit of the story without crying because it's so sad. It's basically the geneticist pulled down the mask and the test was negative. She didn't have Huntington's disease. Basically, she had, and this is really.

• 18:48Speaker 00

  The point of telling this whole story at the very beginning of a book about common disease, a rare disease, about common diseases, is to point out that the way that you, if you believe that you have a disease, this is like the labeling or nocebo effect, if you have believed that you have a disease, then what will happen is you'll start searching your body for evidence of that disease. And because our bodies are not perfect, and because, you know, we always, everyone feels tired sometimes, everyone gets flustered sometimes.

• 19:18Rangan Chatterjee?

  Gets flustered at the airport sometimes.

• 19:20Speaker 00

  Exactly. And what would happen to her when she went to the airport, I mean, I'm the most flustered at the airport, I have to say. You know, what would happen to her at the airport is because she thought she had Huntington's disease, that flustering would just get spiral out of control.

• 19:34Rangan Chatterjee?

  Because it's confirm, oh my, I'm gonna end up like my mom, I need to do the test, but I don't want to do the test, but of course it's Huntington's, what else would it be?

• 19:42Speaker 00

  And as you say, like, she had seen her mom, so imagine she'd seen this vivid, vivid portrayal of Huntington's. So she knew exactly what to expect and how awful it was. And she had a very vivid inner picture in her brain of what was happening to her. And that absolute conviction and that anxious attention to her body made her body less reliable and made her notice everything, which amplified everything. And then when she found out she was negative, she didn't suddenly stop being flustered in airports, she didn't suddenly stop tripping over things, but she was able to say, okay, that was nothing, so nothing spiraled any longer.

• 20:21Speaker 00

  But it's such, for me, this is such an important story because, in two ways, one, because, you know, if we're going to increasingly label people with mental health diagnosis, for example, we need to understand that a label changes a person, a person can conform to a label without even realizing they're doing it. And I need people to know that. I also would like people to learn from the very inspirational Huntington's disease community. So in the sort of seventies, eighties, before it was possible to test for Huntington's disease, people at risk all said, yeah, when a test comes available, I will definitely have that test. And I think a lot of us Would feel that way now, wouldn't we?

• 20:59Rangan Chatterjee?

  Yeah.

• 21:00Speaker 00

  If we we think we'd have it. And now, decades later, the the test became available in the early nineteen nineties. Eighty to ninety percent of people at risk of Huntington's do not take the test. So Valentina's choice is the majority choice. And the reason they don't take the test is because they realize, once you learn it, you have a disease, you can't unlearn it. And they realize that living with the hope of any type of future is very, very valuable. Because the minute you you discover that you've got a big thing coming in your future, it alters your whole experience of life. And that's why how I feel about mental health labels and things is, you know, they they really make things concrete. And I I would like us, young people in particular, to allow young people to live with any kind of future.

• 21:45Rangan Chatterjee?

  Yeah, hope is such an important

• 21:50Rangan Chatterjee?

  thing for humans, isn't it? It's so so important that we have a sense of hope, that our lives could get better, that there is potential in our future. And I guess a incurable condition with devastating consequences. The natural belief would be, oh, yeah, it's good to know, it's good to test.

• 22:09Speaker 00

  Yeah, yeah.

• 22:09Rangan Chatterjee?

  Which is, that's the belief in medicine, it's good to test, it's good to know. But is it good to know?

• 22:14Speaker 00

  Yeah.

• 22:14Rangan Chatterjee?

  You know, and I'll tell you, you know, it's interesting. I've always had this slight aversion to labels as a doctor, which is hard because the whole medical system wants you to label people. But I remember, I've told the story, I think, maybe a few months ago on this podcast, but it's to do with when I was suffering with backache. Severe backache in my twenties. And in essence, I'd tried all kinds of things. People would say, oh, you know, you're you're almost six foot seven, you know, you're gonna have backache. I thought, it kind of doesn't make sense to me. Why would that mean I'm going to have backache? And I saw a spinal surgeon.

• 22:52Rangan Chatterjee?

  Probably back in 2003, something like that. And I remember we went through the results and he said, look, yeah, you do have a disc prolapse. So I can't remember where, I think L4, L5. But he said, Rong, the interesting thing is at your age, I could go out to the street and pull 100 people off the streets with pain or without pain. And it was something like 30 or 40% are going to have the same scan as you.

• 23:19Speaker 00

  Yeah.

• 23:20Rangan Chatterjee?

  We've spoken about chronic pain a few times on this podcast and I've even questioned how we report scans, right? So a young kid comes in, has a back scan and we say, oh, you know, it's fine, but you've just got a bit of degeneration on your spine. Degeneration, in radiology, I mean, that's a normal term. I'm like, hold on a minute, we can't be telling people you've got a degenerative spine. Because I know that affected me for five or 10 years because there's a belief within you, I've got a problem, I've got a weak back. And I've come out the other side of it where I know I've actually got a strong back and I'm capable of, because I've all kinds of stuff I've had to address, emotions, physical stuff. But the point is, is that words matter, labels matter.

• 24:04Speaker 00

  Hundred percent. You know, it's funny because you just made me think of something that happened to me, which is I broke a bone in my foot and then I had to go back and get an X-ray to make sure the bone was healed. And someone read the X-ray report to me over the phone and they said, oh, you've got arthritis in your toe. I don't have arthritis, you know, I have like, I'm a woman who wore shoes that were too uncomfortable for two, you know, how easily that, when I heard that, I was mildly horrified because it just tells you why doing tests can be really problematic for patients because you will never get an X-ray back that says, what a pristine X-ray this is. You know, you will always see wear and tear. And then these things are then communicated to patients in a way that, you know, if I

• 24:47Speaker 00

  wasn't a doctor, I might have walked away from that thinking I had arthritis rather than I should wear better footwear, you know, which is the ultimate message. But it's a real problem. I worry that people don't know what good medicine looks like anymore.

• 25:01Rangan Chatterjee?

  What is good medicine?

• 25:08Rangan Chatterjee?

  Today's episode is sponsored by the daily health drink AG1. The clocks are about to change, the mornings are darker, everyone around you seems to be coming down with something and suddenly that wellbeing you felt in the summer seems a long time ago. I certainly know that feeling and that's why at this time of year, I remind myself to lean into the fundamentals and one of those fundamentals is AG1. AG1 is a daily health drink that has been in my own life for over eight years. And one of the many things I like about it is the fact that many of the nutrients it contains, for example, vitamin C, vitamin A, zinc and selenium, supports a healthy immune system. Some of the other things I really like about AG1 is that they are committed to continuous

• 25:51Rangan Chatterjee?

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• 26:30Rangan Chatterjee?

  All you have to do is head to drinkag1.com/livemore to claim this offer before it ends. Today's episode is sponsored by the daily health drink AG1. The clocks are about to change, the mornings are darker, everyone around you seems to be coming down with something and suddenly that wellbeing you felt in the summer seems a long time ago. I certainly know that feeling and that's why at this time of year, I remind myself to lean into the fundamentals and one of those fundamentals is AG1. AG1 is a daily health drink that has been in my own life for over eight years. And one of the many things I like about it is the fact that many of the nutrients it contains, for example, vitamin C, vitamin A, zinc and selenium, supports a

• 27:15Rangan Chatterjee?

  Healthy immune system. Some of the other things I really like about AG1 is that they are committed to continuous improvement and updating their formula as a scientific research involves. And each batch is independently tested for quality and safety markers, including heavy metals, allergens and banned substances. This is how they can guarantee what's in your scoop and what's not. Right now, AG1 is offering a free AG1 flavour sampler and AGZ sampler to try all the flavours, plus free vitamin D3 and K2 and AG1 welcome kit with your first AG1 subscription order. That's $87 in free gifts for first time subscribers.

• 28:00Rangan Chatterjee?

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• 28:14Speaker 00

  Well, I think good medicine is, you know, if you go to a doctor and you're always concerned, you're concerned about a headache and you want a scan and they just do a scan, that for me isn't good medicine, you know, because the vast majority of headaches aren't due to things like tumors. Good medicine looks like your doctor listens to you and doesn't do a test every time they see you, they'll see you a few times, they'll spend time with you. It's, it's slow medicine, which I know, you know, doesn't work fantastic in the NHS we have at the moment, but you know, medicine that, where you have a symptom and you respond with a test is, is not the best type of medicine. Medicine where someone listens to you, examines you, sees you a second time, gives you time

• 28:55Speaker 00

  and only does tests in those occasional circumstances is what good medicine looks like. I don't know if you're familiar with choosing wisely. There's a lot of kind of over diagnosis concern in the world, not, not just, it is not only my concern. So choosing wisely is a campaign for kind of advising doctors to be a bit more kind of mindful about how they perform investigations. And they did a survey of doctors who said that 72% of them or something said that they thought unnecessary investigations were a big problem. But then when they were asked if they did unnecessary investigations, kind of seventy two percent also said that they did them regularly. So I think as doctors, we're in quite a tricky place.

• 29:39Rangan Chatterjee?

  It's hard, isn't it? Because that, you know, one of the things you said about what good medicine is, is not always ordering a test when your patient wants it, which presents its own challenges, right? Because you may call that good medicine, but that patient may not feel as though they were delivered good medicine. And I've always felt that growing up and being trained as an NHS doctor helps you here in some regard versus private healthcare systems where you can order, it's people a lot more liberal with what they order. Because what I learned very early on as a GP is if I couldn't order a test for whatever reason, but you were, you know, you made sure someone felt listened to, seen,

• 30:21Rangan Chatterjee?

  validated, that, you know, you were really compassionate with them. And so, well, listen, why don't we see you again in a few weeks? But, you know, this all sounds, I could see why this is causing you so many struggles. And, you know, a lot of things can't get better by themselves.

• 30:36Speaker 00

  I definitely feel that way. I think part of the problem may be that sort of our type of society, like kind of developed countries and wealthy nations and so forth, is that we've lost other supportive systems. So where does a person go when they are struggling? There's not a lot of places to turn. And also, we're very in an individualistic society. We don't live with our families. I'm not personally a religious person, but that's, you know, less of a prominent kind of support system in society now. But there is a place you can always go, and that's to your doctor. But to go to your doctor, you have to medicalise your problem, and they have to medicalise your problem. It's a kind of collusion between those.

• 31:17Rangan Chatterjee?

  Yeah, because you don't realise, but by going to your doctor, you know, the lens through which most doctors will see things because of our training is through the lens of diagnosis and medicalisation. So actually, that's what you'll Probably get that unless you're very careful.

• 31:33Speaker 00

  Yeah. And the system works through labels and you know, if you, if you need to go to the next step, your doctor wants to get your support, they almost have to give you a label so that the next layer of support will accept you. The system depends on it. It'd be lovely if it didn't.

• 31:48Rangan Chatterjee?

  There's two cases that are always come to mind when I think about this. One was in my first week in general practice. So I'd moved, I was doing specialism, I was in nephrology and I, as I mentioned to you in my kitchen just now, I, I've always wanted to see everything. Like I've always felt, I want to see all symptoms, how the whole body is connected. And I moved to general practice and remember the first week, a lady came in, young lady, really struggling with her moods and the truth is, I could have very easily diagnosed her with depression, right? But it just felt wrong to me. I just thought, I can't, I need to get my head around what's going on here. Okay. I just can't in 10 minutes go, oh yeah, you

• 32:31Rangan Chatterjee?

  meet these criteria, we'll do a PHQ9 questionnaire on you and I'll, I'll code this as moderate depression or whatever it might be. Just for some reason, it didn't feel right to me. So I said to her, look, can we have a bit more time? Can you come tomorrow at the end of my morning clinic, spend a bit more time with you? I'd love to understand what's happening. And in essence, you know, she had broken up with her boyfriends relatively recently. I think it was her first big breakup. She was really struggling. There was a few other things in her life, but I would see her every week for a period of time. I can't remember how long now, but over that time, I, she was, I don't think anywhere else in her life, as you mentioned before, like religion, right? Whether you are religious or not, one thing that religion did provide people

• 33:16Speaker 00

  Hundred percent.

• 33:17Rangan Chatterjee?

  Is this community and this sense that if there's something wrong, I can go somewhere and talk about it with other people. She got better off her own accord. And one of the things I learnt then was, wow, listening wrong and is really powerful medicine. I wasn't taught that at medical school, but I'm learning that if I listen carefully and that person feels that they have been listened to, that can be healing, right? I did see her a few times for the next few years for a variety of other things. And her mood issues never returned, right? So my point is, is that that's just one case. It's not a clinical study. But I've often wondered if I had slapped a depression label on her, what might be the implications of that for the coming years? Anytime you're

• 34:02Rangan Chatterjee?

  starting to feel low for whatever reason, oh, yeah, yeah, I knew it. I've got depression. You know, that's what I've got.

• 34:09Speaker 00

  Exactly.

• 34:09Rangan Chatterjee?

  So it is an issue.

• 34:10Speaker 00

  Exactly. And when we kind of conceptualize problems like depression through brain chemistry and brain scan findings and things, you know, I think people get a little bit of relief from that because it kind of says, okay, it's not my fault that I feel this way. And I'm glad that people get relief from that. But the real big downside of it is that it potentially gets in the way of them doing exactly what you just described, which is examining, you know, your mood is cannot be separated from your environment or your history or your circumstances. So irrespective of what you call it, an examination of life is needed when you're feeling down. And that's the thing you're sort of you're in control of. You're not necessarily

• 34:52Speaker 00

  in control of your brain chemistry, etc. But I also wanted to say, you know, that your experience there, I think about this as a doctor all the time, you know, I think sometimes I'd like to say to junior doctors that you think that sort of the exciting bit of medicine is going to be like, you know, I don't know, ripping someone's chest open or something.

• 35:12Rangan Chatterjee?

  I'm putting a defibrillator on the chest.

• 35:14Speaker 00

  You know, but I would like to say to junior doctors, and I'm not sure that everyone learns this, but there is nothing as fulfilling, there is nothing as fulfilling as having a conversation like that. And then, and then someone feels better and you're going like, I did that all on my own, just with the power of our discussion. And I'd love for more medical students and junior doctors to kind of appreciate that and not be. Sort of, I think sometimes those kind of softer skills in medicine are kind of looked down on and we think that specialists who do really fancy tests and things, that there's something clever and amazing about that. I think anyone can learn to do the really fancy test part of medicine, but only a certain number of people can make people better by talking to them.

• 35:57Rangan Chatterjee?

  In the book, you detail, I think in the conclusion, about some of the problems within medicine that lend itself to overdiagnosis. And one of the things you talk about there is the downsides of hyper-specialisation and how we do need to value, again, the role of the generalist.

• 36:16Speaker 00

  Yeah, yeah.

• 36:16Rangan Chatterjee?

  And this is, you know, one of the reasons I moved from specialism. I consider myself an expert generalist. I love being a generalist and trying to put it all together.

• 36:26Speaker 00

  Yeah. I mean, I feel really strongly about this. I qualified in medicine in 1991. And so I was kind of on that moment when everyone was suddenly getting more and more specialist. All of the people I learnt from, you know, they were neurologists, but they also did general medicine, you know. But now neurologists don't only not do general medicine, they only do like the brain, but not just, you know, one does the brain, one does muscles. But you don't even just do the brain and muscles, you only do one disease of the brain. We're so specialised and that's, and that has, I think, really affected our ability to see people as whole people. And one of the real difficulties that I have when, you know, and another kind of trigger for writing this book was that I keep seeing

• 37:08Speaker 00

  these super young people, like people in their twenties, who maybe have six or seven different diagnoses. And sometimes I think they've been given different diagnoses to explain the same symptom.

• 37:17Rangan Chatterjee?

  Yeah.

• 37:18Speaker 00

  And I worry about it. I don't see them getting better. But if I try to say to somebody, you know, maybe this diagnosis, this other diagnosis made by this other specialist is worth reviewing, maybe it's not correct. Oh, people don't, you know, I need to stay in my lane, is what I sometimes feel like. I'm not allowed. And I'm not allowed to address multiple different diagnoses, just what I've been asked to look at. And that's a problem then, because nobody's looking at the patient as a whole patient. We really need, and not just GPs, but we need hospital generalists who are overseeing, how many tablets is this person on? You know, do they need every one of those? Because you've had this experience, I'm sure, where people are on tablets for the side effects of the tablet,

• 38:03Speaker 00

  and then another tablet to address the side effects of the other tablet.

• 38:06Rangan Chatterjee?

  Well, once you step back from this, and look at it with a bit of detachment, you're like, what are we doing in medicine, right? I think it's okay to say, modern medicine is really good at certain things. But there's some things we're not that good at. And I think it's okay to go, you know what, maybe we need some help or some new training, or a broader lens to look at here.

• 38:28Speaker 00

  Yeah, I think we really, so I often think that we're working with really great assumptions. So I think this kind of over diagnosis crisis has arisen out of certain assumptions. Like, we assume that if we detect as many people as possible with kind of milder or borderline diseases or mental health problems, that we'll be helping more people. And so, for example, you know, the cutoff point for blood pressure has been coming lower and lower and lower, so that now anyone with a blood pressure over 130 over 80, which used to be completely normal, could potentially be considered hypertensive. And we think that we are helping more people that way. And it kind of seems to make sense. Well, what can be the harm in telling, advising

• 39:10Speaker 00

  people they've got a borderline problem and hoping that that prevents strokes, for example? You will prevent strokes. But for every stroke that you prevent, you will potentially medicalize the lives of actually hundreds of other people.

• 39:23Rangan Chatterjee?

  This played out right, literally, February half term. As I was driving, there was an elderly lady who literally just fell backwards. And she didn't even break a fall, she just fell down. So I obviously immediately stopped the car. Went out to try and help and, you know, helped to get her settled, checked her injuries. This is literally about five weeks ago now. And as she came around, I started to chat to her and it was really interesting. She was put on blood pressure lowering medication about six months ago. She said, I don't know why the doctor put me on this. I don't want, I don't feel good on it, but they said it's going to help me not have a stroke in the future. Now, to be clear, I don't know the whole ins and outs of her story.

• 40:08Rangan Chatterjee?

  So I ain't, I'm not criticizing anyone.

• 40:09Speaker 00

  Yeah.

• 40:10Rangan Chatterjee?

  But what was really interesting to me, and this is what medicine does, right? We think we're helping because the, the, the goal is with, we're saying, oh, you may get a stroke in the future. So therefore, if I can catch that increased blood pressure now and treat you for it, I'm going to stop you getting that. Or, or reduce the likelihood. But then we don't think about, or sometimes I would say we don't think enough about what are the implications of being on a daily medicine? For 10 years, for example. And also for this lady, and I, you know, I did keep in touch with her son. So I, I think it was a side effect to the blood pressure medicine. She basically just had this dizziness.

• 40:53Rangan Chatterjee?

  Again, in order to prevent a theoretical stroke at some point in the future, she may well have had permanent damage.

• 41:02Speaker 00

  Yeah.

• 41:03Rangan Chatterjee?

  From a fall that possibly was a side effect to that blood pressure lowering medication. That, that's a real cost of this stuff.

• 41:10Speaker 00

  Absolutely. And I don't think people, because I've been talking about this kind of stuff a lot now. And, and I find a lot of people really identify very heavily with the person whose stroke was prevented. But people are still failing to appreciate the, the hundred of, the hundred people who took tablets. But their life was also medicalized in other ways. You know, that affects your insurance, your travel insurance. It affects lots of things in your life. When you turn a healthy person into a patient, it, it affects your psychology, affects your financial situation. And I don't think we're paying enough attention to the kind of health economics of that. You know, it's the same with, I mean, I, it always worries me slightly talking about. Cancer screening because I want people to go for cancer screening.

• 41:52Speaker 00

  But I want them to go empowered with the questions or the right questions for their doctor and to understand the tests they're going to get. But if we look at cancer screening, so a symptomatic cancer is one where someone has a lump or weight loss that needs to be treated, that always needs to be treated. A screened cancer in a perfectly healthy person is something a bit different. You can screen 2,000 women for breast cancer. You'll save one life, but you'll potentially treat 10 women for cancer that never needed to be treated. And the thing is, in those sort of circumstances, every one of those 10, 11 women will think they were the person whose life was saved because we're not adequately educating people

• 42:33Speaker 00

  of the fact that when something abnormal is found, it's okay to think about it and watch and wait for a while and discover if you are actually a person who needs all of that aggressive treatment.

• 42:45Rangan Chatterjee?

  You know, one of the things you have done in this book is you have, you've not shied away from some difficult topics, right? Because you've covered autism, ADHD, cancer, POTS. I mean, you've really gone into areas which frankly, as a doctor, would be a lot easier to not go and cover, right? Have you had much pushback since this book has come out? And if so, what?

• 43:11Speaker 00

  So, I mean, the, I completely understood when I was writing this book that, you know, people, I'm talking about diagnosis that people have found personally valuable to them. And I realize therefore it's difficult for people to hear if I'm saying, well, maybe that label isn't, you know, it has some harm associated with it. So I want to just make it clear, if anyone genuinely feels that, you know, their diagnosis is really benefiting them, I don't want anyone to feel that they have to give any diagnosis up. And But I do wanna kind of say to people, you know, think before you take a label. With regards to the pushback that I've had, you know, there are people who have specific

• 43:51Speaker 00

  labels that they have found useful. So, you know, it is my position that if you're at the very, very, very mild end of, say, an autistic spectrum, you might actually benefit more from being helped without the label. So not being dismissed, but being supported without being referred to as autistic.

• 44:10Rangan Chatterjee?

  Why?

• 44:11Speaker 00

  Well, because basically, imagine you're a 14-year-old child and you're having some social communication problems in school and you're assessed and somebody, again, if you've got severe or moderate autism, you're already disabled by your disorder. But if you're at that mild end of the spectrum where you've been compensating and managing okay for a long time, what can happen with that label is that that child focuses all of their attention on what they can't do, that they lower their expectations for themselves because now they believe they have a neurodevelopmental problem that means they can't do certain things. And other people, teachers will unconsciously probably think, well, you know, this person has an autism label, so they probably won't be great at this. So the minute you label

• 44:55Speaker 00

  people in that borderline zone, the little gains they get from the label might be overshadowed by that sort of self-fulfilling prophecy of the label. The label says you are this kind of person and you can't overcome it.

• 45:07Rangan Chatterjee?

  So it might, for some people, not for everyone, I wanna make that clear, and you do make that clear in your book, okay, the initial comfort and reassurance of having a label for maybe something that you've struggled with for a period of time might, over time, be outweighed by the negatives, which you may not realize when you get it. You know, what is it now? Is it 1 in 36 US children have?

• 45:36Speaker 00

  And 1 in 20 people in Northern Ireland, yes.

• 45:39Rangan Chatterjee?

  It says children, adults, or everything?

• 45:41Speaker 00

  Children.

• 45:41Rangan Chatterjee?

  Children have autism. Okay. And also, a staggering statistic in your book was between 1998 and 2018. So that's, what's that? That's just 20 years. Autism diagnoses in the UK increased by 787%.

• 45:58Rangan Chatterjee?

  Okay, are we getting better at diagnosing it? Or is there something else going on?

• 46:02Speaker 00

  Well, you know, to a certain degree, we're getting better at diagnosing it. So, you know, as I said before, I think there is a kind of a chronic neglect of struggling children that had to be corrected.

• 46:13Speaker 00

  But I think now something else is going on. So what's happened? If you're... So in the 1940s, when the concept of autism was coined, it was called extreme autistic aloneness. And 11 children were described, and they were described as being no more interested in people than they would be in filing cabinets or bookshelves. So that was the sort of what autism was in the 1940s. Then in the 1960s, a study in Camberwell in South London, you know, of children attending mental health services, they said, hey, you know, this thing we're calling autism, I think actually it comes in milder versions, and that might be affecting the mental health of children. So then they created a kind of milder version of autism called autism spectrum disorder. And since then, there's just been multiple changes.

• 46:57Speaker 00

  You know, there's every committee for the Diagnostic and Statistical Manual of psychiatric illnesses slightly adjusts, just tweaks, the diagnostic criteria to allow it in another group. So the age keeps being adjusted. So it used to be a diagnosis of infants. You had to show it first in infancy, but now you can get a diagnosis in adulthood. Or they slightly change the diagnostic criteria so that it fits better with women. So they will say, well, teenage girls don't really exhibit this aloneness. So perhaps their social communication problems manifest differently. Maybe they have lots of social groups, but only shallow friendships. So what's happening there is that the diagnosis is completely changing in little ways all the time, until the diagnosis now looks nothing...

• 47:42Speaker 00

  I mean, if you think, for example, Anthony Hopkins is said to have, the actor Anthony Hopkins is said to have autism, I mean, you would not look at him and think extreme autistic aloneness. So that what it was and what it is now are two wildly different things. I feel that, not everyone feels this way, of course. My concern is that as well-meaning as all this is, so the idea with all of these changes is if we can find more struggling children and help them, that we will get, have a healthier population going forward. The reason I think it's over diagnosis is that we don't have a healthier population going forward. So you can imagine if you're helping more kids in school, you should be

• 48:24Speaker 00

  seeing happier, healthier, better adjusted young adults. But we actually have worse mental health in young adults than we've ever had. So how, how has it helped them? You know, that's my question is, if it was a good idea to give so many people an autism diagnosis in school, where's the downstream positive effect? And I think we have to stand back and say, hey, listen, we meant well, but maybe we should rethink, it's not working.

• 48:49Rangan Chatterjee?

  Could, could some people argue, say, well, listen, I hear what you're saying, but at the same time, the support hasn't caught up with the diagnosis. So we're now catching more people who we were missing before, but we haven't quite got adequate support. Is that why mental health isn't improving?

• 49:07Speaker 00

  And certainly people do say that. And I do agree that I'm sure that everyone isn't getting the support they needed. But let's look again at what sort of, what's happening in school with special educational needs coordinators. So, you know, 1990s, there were none of, I'm not sure exactly when they came in. Let's say I was in school in the 80s, it didn't exist then. So sometime in the 90s, this came in. 27% of children in school now get special accommodations because they have a medical diagnosis. So we might not be doing it perfectly, but we are identifying a huge number of people and making special accommodations for them in school. I appreciate there's so many things that feed into mental health and there's so many other factors. But you know, if

• 49:48Speaker 00

  you, if you went from zero to 20%, 27%, and you are not seeing some improvement in the wellbeing of young people, then I really think, you know, you have to stand back and say, hey, maybe it's not working.

• 50:01Rangan Chatterjee?

  Yeah. And if we just take that trajectory and go, if we keep increasing at this rate.

• 50:08Speaker 00

  Yeah.

• 50:09Rangan Chatterjee?

  In a decade, in 15 years, it is not unreasonable to think that we could tip over 50%, right? So if over 50% of kids are requiring, you know, special help at school, you know, we have to ask ourselves, well, what is normal anymore? Like, what is typical, what is atypical? We have to ask ourselves, you know, is there something wrong with the school system? Right? We have to, we have to certainly ask questions. And for anyone who is pushing back at what you're writing about or saying, I just want to say, listen, you may or may not agree with everything Suzanne is saying, but it is an important conversation. This conversation has to be had. And I think a lot of doctors

• 50:53Rangan Chatterjee?

  are feeling it, a lot of the public are feeling it, that all these diagnoses are going up. Yes, it can be helpful, for sure. But for some people, it's not. And we have to be interrogating the approach that we're taking, don't we?

• 51:11Rangan Chatterjee?

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• 51:55Rangan Chatterjee?

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• 52:19Rangan Chatterjee?

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• 52:59Rangan Chatterjee?

  to lean into the fundamentals. And one of those fundamentals is AG1. AG1 is a daily health drink that has been in my own life for over eight years. And one of the many things I like about it is the fact that many of the nutrients it contains, for example, vitamin C, vitamin A, zinc and selenium, supports a healthy immune system. Some of the other things I really like about AG1 is that they are committed to continuous improvement and updating their formula as a scientific research involves. And each batch is independently tested for quality and safety markers, including heavy metals, allergens and banned substances. This is how they can guarantee what's in your scoop and what's not. Right now, AG1

• 53:43Rangan Chatterjee?

  is offering a free AG1 flavour sampler and AGZ sampler to try all the flavours, plus free vitamin D3 and K2 and AG1 Welcome Kit with your first AG1 subscription order. That's $87 in free gifts for first time subscribers. All you have to do is head to drinkag1.com/livemore to claim this offer before it ends.

• 54:16Speaker 00

  Absolutely, and I'm absolutely in no way saying that those, let's say there's 27% of children who are getting special accommodations in school, I'm not saying that those children aren't struggling and that we should go back to a period of just ignoring struggling children. What I'm saying is that A, the diagnosis, labelling them as having a brain disorder, and B, the type of help we're giving, well, we're not seeing any evidence it's working. It may be that what we're doing is asking young people to focus on what's negative about them and what they cannot do, whereas perhaps what we should be doing is looking at young people and helping them to figure out what their talents are and what they can do, so they can work to their strengths, rather than sort of expecting

• 55:01Speaker 00

  a world to accommodate to their weaknesses.

• 55:03Rangan Chatterjee?

  Yeah, it's interesting that I think your chat on autism is very, very good, it's very, very thorough, and you present all kinds of different viewpoints in it, and you, in fact, some of the challenges, is it someone with autism?

• 55:17Speaker 00

  Yeah.

• 55:17Rangan Chatterjee?

  Is it an autistic individual? And you raise where people's concerns come at. What I also found super interesting is you write about this chap called Miles, and you write, autistic people don't want to be fixed. And you write that Miles is one of a very large and growing number of autistic people who disagree with the medical profession's deficit-based approach to diagnosis, preferring an approach that concentrates more on what makes an autistic person special. For people with this view, the concept of treatment is offensive. And it's kind of interesting, is that this, as more and more people have been brought into

• 55:58Rangan Chatterjee?

  a diagnosis of autism, people are challenging all kinds of things, which is probably a good thing.

• 56:04Speaker 00

  Yeah, I mean, it was interesting, Miles and actually another, a young woman called Poppy, who I wrote about in the book, but I talked to, I should say, a large number of people, but I could only write a small number of stories. So I heard quite often the opinion expressed that, you know, autism is a difference rather than a disorder, and therefore, you know, to ask someone to change is, it would be like, you know, trying to tell someone not to be homosexual, or not to be, you know, it's changing a fundamental part of yourself. Also, you know, Miles and Poppy both expressed the opinion that they didn't want to be called a person with autism, they wanted to be called autistic because it's an integral part of them, which is interesting because, you know, I work with people with epilepsy, they don't

• 56:49Speaker 00

  want to be called epileptics, they want to be called people with epilepsy. So it's a very unusual view that applies more to autism than to anything else. I mean, my feeling about that is that I agree that they're probably, the world probably works better for some people than other people, and there probably are people who feel different and are different, and perhaps the world isn't set up equally for people who feel different and feel they don't process in the same way. But the concept of autism was, or was created to help people who do have a disorder. It was created to help people who've got a very significant social communication and

• 57:31Speaker 00

  behavioural problem, which stops them doing super ordinary things that everyone should be able to do, going to school, going to the shops, making friends, having relationships. So autism was created as a disorder to identify this group of people, to get them support, to make them better. I think that basically, if we then co-opted into a place where there are people struggling in a different sort of way, which perhaps would be better referred to as a difference, then we're probably talking about something else. And what I would argue for is that both groups need support, but we keep autism for the autistic community who have a medical disorder for which they need medical support, and

• 58:13Speaker 00

  that we have a different way of supporting people who feel their problem is more of an integral difference.

• 58:18Rangan Chatterjee?

  Maybe a different word?

• 58:19Speaker 00

  I think a different word would be useful, because, you know...

• 58:25Speaker 00

  There are people, and I did also write about a boy or man with very severe autism. And his story was told to me by his mother Agatha. And, you know, he was severely autistic from infancy, to the point that, you know, he would not be safe in the world if he didn't have somebody kind of helping him at all times. He also had a learning disability. His autism was so severe that, you know, he would have regular meltdowns if things went a little wrong in his environment. Like, he needed, even if he was in a cafe, for example, he'd need his plate cleaned the minute he'd finished eating. And if his plate wasn't cleaned, you know, then he would have a meltdown.

• 59:09Speaker 00

  So the concept of autism was created for people like him because in that meltdown, he's a danger to himself and he needs significant support just to go to school. He's had great support. He has a job where he empties bins in a business and helps with photocopying and stuff like that. But he only does that because he got a diagnosis of autism and therefore tons of support.

• 59:32Rangan Chatterjee?

  So for that individual, you're saying the diagnosis and the support that comes along with it is extremely helpful?

• 59:38Speaker 00

  And just absolutely vital. He would not be able to, if there weren't sort of support systems and pathways and if there wasn't a knowledge base about autism, people wouldn't even know how to approach his problem. I don't think anyone really believes that autism is a single thing. You know, it's probably a whole range of different brain disorders, genetic conditions that lead to a certain set of behaviours. And I think we need that label for the people who do have a disorder that is such that they can't do really important things.

• 1:00:08Rangan Chatterjee?

  Yeah.

• 1:00:09Speaker 00

  And I think perhaps we should think about changing the language for people who are struggling in the kind of realm where, you know, the world has not been very fair to them. They do need support, but not necessarily need to be asked to change who they are.

• 1:00:23Rangan Chatterjee?

  Yeah. It's interesting in that chat, so you you you write about the potential negative effects of an autism diagnosis. You say they are various. The stigma of autism has been associated with low self-esteem in children, which is super interesting. Self-determination, the ability to be motivated and in control of one's own life could be eroded for some people by an autism diagnosis. And you do make the case, I'm not just talking about autism now. You you make the case throughout the book that, you know, a diagnosis is not always neutral. A diagnosis does not always equal better health. You also talk about diagnoses

• 1:01:07Rangan Chatterjee?

  sometimes becoming a social identity and the potential problems with that.

• 1:01:13Speaker 00

  Yeah. Yeah, I mean, I just want people to know they have a choice. You know, I want people to know that like when if they have a child who's struggling a little bit, know your child, you know, what do you think will work best for your child? If they get a diagnosis, what will they get from it? And what could it take away from them? Because the minute an illness becomes an identity, I always think of this, like, if anyone comes from a large family, you know, what happens in a large family is you get the clever one, the sporty one, the, you know, and those kind of identities you're given as a child, they really affect you and you grow, you can grow up the rest of your life thinking of yourself as not as clever as your sister, or not as sporty as your sister, or

• 1:01:53Rangan Chatterjee?

  Well, these beliefs, right? As you as you highlighted with the Huntington's case, right? Belief is huge. I recently had a lady called Ellen Langer on the podcast. I think you said you were listening to that episode.

• 1:02:06Speaker 00

  Yeah, it was fantastic.

• 1:02:08Rangan Chatterjee?

  She is very much of the belief. She doesn't necessarily talk about over diagnosis, but the what you believe to be true does impact your life. It does impact your health. That point, a diagnosis is not neutral.

• 1:02:22Speaker 00

  Yeah, exactly. And it's children that worry me most, actually, because I think we talked about Miles there. Miles got a diagnosis of autism when he was 50. But by the time you're 50, your identity has developed, you know. But imagine a 14 year old learning that they have this label, and then they're aware that this label means that, you know, You possibly can't do this very well, you possibly can't do that very well. You know, your brain isn't necessarily developed entirely normally. I mean, what would, what does that do to a child? Now, obviously, if that, if a person is really struggling, they might need that label so they can figure themselves out and they can figure out how to move forward. But I just want people to think, okay, well, you know, could my child take this on board too literally? Might it stop them?

• 1:03:07Speaker 00

  Let's face it, like, your brain doesn't mature until you're in your twenties, your mid twenties. So there's plenty of time for a person to change. But will they still change if we tell them that there's something fundamental about them that can't change?

• 1:03:20Rangan Chatterjee?

  Yeah. What would you say, Susanna, to someone who's listening to this and is feeling at the moment quite upset with your comments on autism? If they're feeling, you know what, that this is, let's say, for them personally, a diagnosis has been the life changer, right? It's, it's validated what they always knew to be the case. You know, people always thought they were lazy, they were struggling, they were whatever it might be, whereas now they've got a reason, right? So, you know, and I'm also thinking about, let's say, a mother. Maybe a mother's got a child who has struggled somewhat and getting the diagnosis and the support has been a game changer.

• 1:03:57Speaker 00

  Yeah.

• 1:03:58Rangan Chatterjee?

  What would you say to those people?

• 1:03:59Speaker 00

  Yeah, I mean, I am a doctor, I'm in the business of making people better, you know, and if, if anybody has a diagnosis, I do not want to threaten anyone's individual diagnosis because if something has genuinely helped someone and something has genuinely helped someone move forward in their life, well, that's fantastic. That's what we want as, as doctors. But I, just going forward for people, I would like, you know, people to hold the diagnosis sometimes a little more lightly. So if something is changing in their life, they might realise that the diagnosis doesn't need to stay with them for the whole life. And I'd like, particularly for, for young people in school whose families are thinking, will I, won't I?

• 1:04:41Speaker 00

  And I just like people to kind of think, okay, what are my choices here? You need the information, you need to understand all these issues so you can make the right choice for yourself. And the right choice for one person might be get a diagnosis, but that might not be the right choice for another person. So I just want people to think about the issues.

• 1:04:58Rangan Chatterjee?

  That's nuanced. It reminds me of my approach to, for example, I've got this health wearable on.

• 1:05:03Speaker 00

  Right.

• 1:05:03Rangan Chatterjee?

  Now, there's a lot of discussion, are wearables a good thing, are they a bad thing? Right. And again, I think it's too black and white, even the way that that question is posed, right? It's not black and white. So for example, if you can be relatively detached from the data and it helps you understand yourself better to make better choices, I think it can be amazing. If on the other hand, as it is for many people, you become overdependent, overly reliant, can't function without them, and the data makes you anxious, it's probably not a good thing, right? So the tool is actually neutral, but it depends on

• 1:05:42Speaker 00

  Hundred percent.

• 1:05:42Rangan Chatterjee?

  who you are and your personality is to whether it's going to have an effect. And I kind of feel, we don't think about that through the lens of diagnosis, but we could even now apply those principles to getting a diagnosis, you know, what is your personality like? Are you going to make it the entirety of who you are? And I know it depends on what the condition is. But it's a very interesting point that I don't think we're discussing enough. I guess it's easy to think about this through the lens of more subjective diagnoses, right? We might think, oh, with type 2 diabetes, which is a lot more clear, it's more clear cut. I actually don't even think it's clear cut on type 2 diabetes, right? So I'll give

• 1:06:22Rangan Chatterjee?

  you my take and then you can tell me how you see it, right? But let's say in this country, your HbA1c, the average blood sugar marker, once it hits 6.5, you are given a diagnosis of type 2 diabetes. Now, as I say, I've always slightly had a problem with labels. So what I would often do early in my career, if someone came home with 6.5 or 6.6 or 6.7, what I would say is Your blood sugar is currently consistent with a diagnosis of type 2 diabetes. But there's probably multiple things in your life that we might be able to address that if we address them, might mean that it's no longer in that range.

• 1:07:04Rangan Chatterjee?

  Are you interested in me trying to help you figure out what some of those factors are? And usually if you frame it like that, people are like, oh yeah, is there something I could do about this? Whereas you could also, and this is what we teach on this prescribing lifestyle medicine course that we do with the Royal College GPs, right? You could also in that consultation say, oh, actually, Martin, you've now got type 2 diabetes. We're going to start you on metformin because that's the drug for doing this. Normally, within a couple of years, you're going to need another drug and you might end up needing insulin at some point in the future. And as they're walking out saying, oh, if you can lose a bit of weight, that might help you, which is often what happens.

• 1:07:47Rangan Chatterjee?

  The way we frame that, what those two patients walk out with is completely different. And so I think doctors, and I know it's hard in the current system, I get that. But I think these have real implications. So I would even argue for type 2 diabetes, you could apply this principle and go, do I have to make that diagnosis? And what are the consequences? So what's your take on that?

• 1:08:11Speaker 00

  Yeah, no, I completely agree with your approach. But worse than, worse than type 2 diabetes is that we now have pre-diabetes, that we're telling people that, you know, a kind of a border zone between having diabetes and being normal. So it's, it's not a diagnosis, but you can, if someone told you you had pre-diabetes, you would think you'd been given a diagnosis. What you've been told is you're in a high risk state for diabetes. You're talking about being more cautious about telling someone who has a measure that is diabetic, whether you should be cautious in how you give that information. But we're already developing systems to tell people who are just at risk of diabetes that they have a problem.

• 1:08:51Rangan Chatterjee?

  Because generally speaking, this would be deemed as a good thing. It would be deemed that. Yeah, we wanna get people early. If we can get people early and we can empower them, we can prevent how many people ultimately get a diagnosis of type 2 diabetes. What's your pushback against that?

• 1:09:11Speaker 00

  Well, first of all, when they changed the definition of prediabetes by slightly lowering the fasting glucose level, I think it was about 2017, that change meant that if those new diagnostic criteria were applied to everybody in China, 50% of Chinese adults would have prediabetes. If it was applied in the UK and the US, a third of adults. So we're potentially labelling a third of adults as high risk for diabetes. Now, people will say, well, great, so just tell them to eat better and lose weight and exercise and all the things we should be doing anyway. But the truth is that in the 10 years following that prediabetes diagnosis, even though it isn't really a diagnosis, a lot of people will just revert

• 1:09:53Speaker 00

  back to normal. You know, a lot of people will, the majority of people in the following 10 years will not become diabetic, but could potentially live as if they are going to become diabetic. I don't mean in terms of adjusting their lifestyle, that would be great. I mean, in terms of worrying about what's going to happen to them in the future. That's a big psychological load to place on a person. You might get sick in 10 years, a very serious illness that has lots of complications. I think we think an awful lot about the person with type 2 diabetes that we saved, but we don't think nearly enough about all the people that we scared to get there.

• 1:10:29Rangan Chatterjee?

  Yeah, Suzanne, what you just said was so profound and interesting because you're basically saying that one of the core tenets of how we practice medicine, or our belief about what the practice of modern medicine is, which is early detection, identify people at risk, treat them early.

• 1:10:52Rangan Chatterjee?

  May not be the best approach.

• 1:10:54Speaker 00

  Well, I think we are medicalising far more lives than we're saving. Of course, with these approaches, we do save lives, but we are really being quite kind of blasé in a sense about all of the lives. Yeah.

• 1:11:07Rangan Chatterjee?

  You could even apply this, right? Although you don't cover this in the book, but obviously statins are quite controversial. Okay. And, you know, there's perspectives on both sides, right? But again, like that lady who fell and potentially risked having significant permanent disability from a fall that I think was highly likely secondary to her blood pressure medication that was to help her prevent sickness in the future. You could also argue the same thing, that we have this thing in medicine, primary prevention. You don't have anything yet, but if we give you this, and the truth is, and it's an uncomfortable truth, often it's pharmaceuticals, right?

• 1:11:48Rangan Chatterjee?

  Which you have to be on every day for life. If you assume, if you accept that it may reduce your risk, which I know is hotly debated and contested, right? In primary prevention. If you sort of believe the data saying that actually, yes, if I start taking this statin, I'm going to reduce my chance of having a heart attack in the future. What we don't weigh up is, yes, but what is the implication of believing that?

• 1:12:18Speaker 00

  Yeah.

• 1:12:19Rangan Chatterjee?

  And also having to take this drug, which does have side effects for quite a lot of people for 20, 30 years. And the problem is, is you can't do the test. You can't run the trial to go, what would have happened had you not taken it?

• 1:12:32Speaker 00

  I mean, that's the problem. And, you know, you never know who's been saved and who hasn't. And you also don't sort of realise that, you know, I saw one, I've forgotten the full details of it now, but they looked at people who'd been diagnosed with borderline hypertension and found that they were more likely to be off work sick because it changes your kind of health perception to be told that you have a health problem. You know, what I would like, I'm not kind of here to say, listen, let's not ever check anyone's blood pressure or screen healthy people again. But, you know, I have a feeling that these innovations, that they target the wrong people. Who pays attention to these things? People are already a little bit minded to be healthy, kind of usually middle class

• 1:13:17Speaker 00

  kind of people who are already. Kind of on that path to health, whereas higher risk individuals, people who are smoking and very overweight and drinking aren't necessarily the people coming forward. I think we should be targeting people with multiple risk factors because we know that they're the high risk group, rather than targeting a whole population, including lots of people who have no other risk factors.

• 1:13:44Rangan Chatterjee?

  Let's go back to cancer screening, because I think there's a general view that more screening is better.

• 1:13:52Speaker 00

  Yeah.

• 1:13:52Rangan Chatterjee?

  I certainly think with the general public, there would be a view that, yes, I want to get screened because I want to catch it early. And you go through, and you mentioned some of it already in this conversation, but you go through some of the data, I guess prostate, for example.

• 1:14:05Speaker 00

  Yeah.

• 1:14:05Rangan Chatterjee?

  It's kind of super interesting. It's, it's everything, I guess, the overarching principle is that, and I think this is frankly a principle for anything in life, right? It goes beyond medicine, which is that there is a consequence to everything. Nothing is neutral. There's an upside and there's a downside. And are you paying attention to both of them? So what is the potential downside of an increase in cancer screening?

• 1:14:30Speaker 00

  I mean, if we think about prostate screening, because it's very topical now, you know, we, there are a lot of signs up saying, you know, think about going to a GP for screening, but there's no national screening program for prostate cancer. And that, there's a reason for that. And the reason is that if you screen a thousand men for prostate cancer using PSA, the blood test, you will save no lives and you will potentially treat at least 10 men for cancer who didn't need to be treated. Now, this will kind of blow some people's minds, but I mean, it shouldn't, because medicine has known this for years.

• 1:15:04Rangan Chatterjee?

  Yeah.

• 1:15:05Speaker 00

  That's one of the things upsets me a little bit is, you know, if you read the British Medical Journal, you'll see doctors debating these things for years, but it's not filtering through. We all have little clusters of, not we all, but a large percentage of us have clusters of abnormal cells in our body. We know this now because we finally have MRI scans and mammography and, you know, we didn't have the means to find these things before. We now have the means. And that means when we begin screening people, we're finding cells that were probably there in many previous generations, didn't cause health problems, we can find them now. But what we can't do is distinguish the abnormal cells that will grow into something frightening and life threatening from the abnormal cell that will never change at all.

• 1:15:47Speaker 00

  And I kind of, I definitely don't want to scare people off screening. But I do want people to know this. So if you go for a screening test and they find some abnormal cells, be aware that not every abnormal cell will grow into something important. So that you are empowered to discuss with your doctor, you know, do I need to panic over this?

• 1:16:07Rangan Chatterjee?

  Yeah. And you're saying like be empowered, but it's, let's say, I don't know, in prostate screening, for example, and I know there isn't this national program, let's say, I guess, the unnecessary investigation that may come from a positive result can be quite significant, can't it?

• 1:16:27Speaker 00

  I mean, I think first of all, know that this issue exists. So know that. So there was a study in Detroit where they did, in postmortems, some people who had died for things, nothing to do with the prostate. And they found 45% of men over the age of 50 had abnormal cells in their prostate that could be interpreted as cancerous. So these cells are really common. So first of all, know that that can happen.

• 1:16:48Rangan Chatterjee?

  So these guys weren't people who died from prostate cancer, they died for other causes, but they found that almost half of them had abnormal cells. It's a bit like that MRI back scan I said before. You got back pain, you don't have back pain, take 100 people off the street, 30 to 40% will have a scan like that.

• 1:17:06Speaker 00

  Exactly. And when you get older, it'll be more than 50%. So first of all, know that. And then realize that there is other, because I think what happens, and this is human nature, I totally understand it, you hear you've got these abnormal cells, what do you think immediately, oh, get them out, you know, that's your kind of, would be my immediate reaction. But I want people to be aware that in huge proportions, in the majority, these cells will not grow at all, or will grow very slowly. Therefore, there's no need to panic. So what you can do is up for, ask about what we call watchful waiting programs. That means that you know, you just have regular scans for a while and that will divide you from the person who has cells that are going to grow quickly.

• 1:17:49Speaker 00

  But you can't have that chat with your GP or your hospital doctor if you don't know these issues exist. So I don't want to scare people into not sort of looking after their health properly and not going for screening when called. What I want is for people to be able to know these things exist so that they can say, listen, you know, is there an option for thinking about this for a while? We could save a lot of people some really unpleasant operations.

• 1:18:13Rangan Chatterjee?

  Yeah. You mentioned the BRCA gene and breast cancer in that chapter.

• 1:18:18Speaker 00

  Yeah.

• 1:18:19Rangan Chatterjee?

  Anything you want to share about that?

• 1:18:20Speaker 00

  Yeah, I mean, again, this is, you know, this is a kind of story about science and how, you know, if we learn how to do something and it's really clever, we want to, and we know we can help a group of people with this clever thing, then we'll help a group of people and then we'll think, oh, you know, I wonder can we help more people if we do more of this? So the BRCA gene, as people will be familiar probably with it, is it increases the risk of certain cancers, particularly breast cancer, ovarian cancer, fallopian tube cancer. If you have a family history of cancer, so your mother, your grandmother, or anyone in your family has had cancer at a very young age and you test positive for this gene,

• 1:19:02Speaker 00

  you can have a very elevated risk of cancer, which could mean that some people will choose to have prophylactic surgery. So I'm sure everyone has read the story of Angelina Jolie, who had a mastectomy and hysterectomy and oophorectomy, ovaries removed as well. So you can, this is an option that you can take if you learn you have this gene. Now, it's, that's pretty dramatic stuff and not, you know, this is big surgery and not everyone who has that gene will get the cancer. But a lot of people will choose to have the surgery because, again, a little bit like the Huntington's disease story, they've seen this horrible disease in their family, they saw their mom get sick.

• 1:19:43Rangan Chatterjee?

  Yeah.

• 1:19:44Speaker 00

  And therefore, they, they think, well, I don't want that to happen to me, they've had family members die. But this is the bit of the story that, the reason I included the BRCA gene in this book is because It is likely that women who've had this drastic surgery, I don't know for sure, but it's likely that some of these women's lives were saved and that some probably had surgery that wasn't absolutely necessary, but a bigger number's lives were saved. But what we're doing now is scientists are saying, hey, what if we test for this BRCA gene in other groups of people? So all of the science of the BRCA gene has been done in people who have a family history of cancer. So it's like a statistical model.

• 1:20:27Speaker 00

  It's like if you have two family members and this gene, you've got an 87% chance of cancer. If you've got three family members with cancer and this gene, you have an 80% chance. But now we've decided we want to extend this testing to bigger groups and it's a real medical thing, you know, hey, we've got this fancy thing we can do, we can do it really quickly. Let's do it in more people and see what happens. We have no statistics for what this gene means to a person who doesn't have a family history of cancer. So to understand your risk of cancer, if you have one of these genes, you factor in multiple things, that you've got a family history, what types of cancers, how many in the family. But when you apply this exact same medical test to a group of

• 1:21:11Speaker 00

  people who have no family history of cancer, you've no statistics for that. But we are already at the point of potentially offering surgery to people in that position, as if we knew what this cancer gene meant to them.

• 1:21:24Rangan Chatterjee?

  There's also a culture, isn't there, about doing, right? So this, not just related to this, but I guess everything we've spoken about so far and most of the things you write about in your book, there is, there is this expectation that when you go and see a doctor, the patient expects it and the doctor expects it of themselves, that something is going to be done. A label is probably going to be applied and some form of treatment in some form will be given. I think that is a Maybe an unwritten expectation that we might have of ourselves as well as doctors?

• 1:21:59Speaker 00

  Yes, you're right. And I think sometimes for a patient, the satisfying consultation, and it can be satisfying for the doctor too, is where something is done and a label is given. You know, just reassuring someone isn't always feel as satisfying. But I think the bigger problem is that we are associating high tech with better medicine and modern tests with better medicine. Essentially, medical diagnosis is a clinical skill, as you know. Like, you would never give a doctor, you know, a neurologist, a hundred brain scans, and then maybe a cursory history, like, you know, this lady has headache, this man has, and then say, give me a diagnosis. You just wouldn't do it.

• 1:22:41Speaker 00

  You make a diagnosis by listening to the story, understanding the nuance of the story, and then the tests are like a kind of a supplementary thing that help you to put the little bits together. But then we get something like genetic testing, and we start thinking we don't need those principles any longer. We can just do this really fancy, you know, phenomenal thing.

• 1:23:03Rangan Chatterjee?

  And then not even take humans out, have AI interpret and just give you the protocol or whatever. You know, because we're moving into more and more of a tech world. But as I think about the potential applications to technology in medicine, and AI and all this kind of stuff, and I'm sure there's going to be lots of really beneficial applications. I think you write about this. I've read about how I think AI can read scans better than radiologists, I believe, or certain types of scans. But, you know, human beings are not machines.

• 1:23:36Speaker 00

  No, and that what, so an AI can read a scan better, but it cannot tell you if what is on that scan explains what that person came into the room with. And that's, that's the problem that we're not getting with tests and rolling them out is, listen, you know, there's lots, lots of things are found on scans that have nothing to do with anything. And it's, you always have to be coming back to the clinical skill. What did your patient tell you? You know, did, did it sound consistent with what's on the scan? So I really hope what's going to happen with AI and et cetera is that it just means that GPs And God, I feel so bad for GPs and I get a long time with my patients. They don't care very long at all. What I'd love to see is that AI etc takes those mundane scan

• 1:24:20Speaker 00

  reading jobs, sorry radiologists, I'm sure it's very exciting, takes those kind of jobs and allows the doctor to spend more time with their patient.

• 1:24:28Rangan Chatterjee?

  That would be a real upside one sets. Going back to the BRCA gene for a minute.

• 1:24:34Speaker 00

  Yeah.

• 1:24:37Rangan Chatterjee?

  The BRCA gene, as you say, is not deterministic, i.e. if you get it, it does not mean 100% for certain you're going to get something. And it's not the same thing at all, right? But if we just zoom out and look at these as principles and what's going on here, there is of course a field of epigenetics, right? And how our environment interacts with our genes. So let's go to type 2 diabetes. It's a lot easier for people to get their head around it. A lot of people, and this is again speaks to the problem with labels and our perception. A lot of people will often say, oh, you know, yeah, well, my dad had diabetes. Of course I was going to get it without realising that actually you may have a gene that gives

• 1:25:18Rangan Chatterjee?

  you an increased likelihood, but it's still the inputs into your life that will ultimately determine if you get type 2 diabetes or not. So even if all your family members have had it and you were able to, for, you know, and yes, there's many factors that go into this, but you were able to eat well and exercise well and have a low stress level, whatever it might be, you're probably not going to get the type 2 diabetes. I think we're seeing in a lot of things, because you do even mention APOE 4 and dementia. And when I spoke to Professor Dale Bradison from the Buck Institute, who's done some incredible work with Alzheimer's, I think he said to me that even though APOE 4 is associated with an increased risk of

• 1:26:02Rangan Chatterjee?

  dementia in the Western world, I think he said to me in some African countries, it's not.

• 1:26:08Speaker 00

  Oh, that's interesting.

• 1:26:09Rangan Chatterjee?

  Yeah, i.e. these genes are, they can show an increased propensity for something.

• 1:26:17Rangan Chatterjee?

  But our lifestyle, our environment, the stress we're exposed to, all these things also play a role, which it kind of takes away that empowerment piece if we say it's all G. I know Huntington's is a different case, because it's kind of 100%.

• 1:26:31Speaker 00

  Yes, except that, you know, perhaps it isn't, because we've never done testing for Huntington's disease in the general population. So even there, there are doubts. You know, so it's, we're kind of taking a test that we've done in patients who have a problem. And we think the exact same rules apply to people.

• 1:26:49Rangan Chatterjee?

  Of course, we're making gross assumptions.

• 1:26:52Speaker 00

  And again, I'm a doctor and I do genetic tests because I deal with people who have, I mean, I don't analyze them, I send my patients for them. So you would think I would kind of really have, I should have a really good understanding. But I learnt so much writing this book from a geneticist about, you know, these tests are every bit as hard to interpret as an X-ray or a brain scan. So for example, you know, there's a gene that does increase people's risk of type 2 diabetes. If your family has this gene and you have the gene, you have a very, very high risk of getting diabetes. But I don't know if people will be familiar with the UK Biobank, which is 500, it's half a million, healthy participants

• 1:27:34Speaker 00

  have given lots of samples and they're following their health over time. And by looking at populations like that, they find there's loads of people who have this diabetes gene who don't get diabetes. And these are people without a family history of diabetes. So what that probably means is the family history people who are at risk, there's something else in there. Maybe it's their shared environment when they were growing up, or maybe these other people who don't get diabetes have a whole gene we haven't discovered yet that protects you against diabetes.

• 1:28:04Rangan Chatterjee?

  Yeah. And the other thing we don't think about when we think of, oh, my parents had type 2 diabetes, of course I'm going to get it. You know, because the assumption is that it's genetics. But, you know, there are probably certain behaviours in that family.

• 1:28:18Speaker 00

  Absolutely.

• 1:28:19Rangan Chatterjee?

  Which you may have absorbed as a child, eating behaviours, you know, resolving your difficult emotions with food, or whatever it might be. And I say this with compassion, but we've got to look at this. There's other ways that these things can be passed on that aren't just genes.

• 1:28:33Speaker 00

  Yeah.

• 1:28:34Rangan Chatterjee?

  The other thing with genetics, I mean, I don't know how familiar you are with all these kind of new genetic companies, direct to consumer. And, you know, so there's a thing, for example, with caffeine, whether. Are you a fast metaboliser or a slow metaboliser? Okay, and the theory is that the genes will tell you, the geneticists will tell you that, oh, if you're a fast metaboliser, you know, you process it really quickly. So you might be one of those people who can have a double espresso in the evening and it not affect your sleep, right? And so I thought, okay, this is interesting and I love to experiment and see these things. I'm exquisitely sensitive to caffeine.

• 1:29:09Speaker 00

  Me too.

• 1:29:10Rangan Chatterjee?

  Exquisitely, but the genes tell me I'm a fast metaboliser. And I'm like, so you would bet your bottom dollar, or I would, based upon what I know about myself, oh, I'm going to be someone who metabolises this slowly. But it isn't. So certainly you could say the test is wrong. Maybe I need to corroborate it with a different laboratory, sure. But it raises questions in my head to go, how much do we really know about these genes? That's my big question.

• 1:29:39Speaker 00

  But we really don't, you know, and again, I'm not a geneticist and it was a real learning curve for me. I spoke to geneticists who taught me so much. And the bottom line is that, you know, we've decoded so little of the human genome that we actually know phenomenally little. I would really counsel people, it sounds like, did you have a direct to consumer genetic test?

• 1:29:58Rangan Chatterjee?

  I did, yeah. Not to learn about myself, because of what I do and how many people are communicate with us on this podcast each week, I'd like to keep abreast of what's happening. And I'm, yeah, sometimes I'll just go, yeah, I'm just going to do that, just to get a sense of the playing field and what's going on.

• 1:30:13Speaker 00

  Yeah, I mean, I would say to people, just be super cautious. I spoke to one woman and she did the test and she just ticked the health box without really, you know, if you're getting a genetic test in the NHS, you will see a genetic counsellor probably multiple times before you have that test. So you can understand all the implications. But in these tests, you just tick a box. Now, in fairness to the companies, I should say, they do offer counselling. There's a video you can play. But you know what we're all like when it comes to ticking consent boxes and watching videos? You know, you don't always do it as thoroughly as perhaps you should. And I spoke to a woman who discovered she had a cancer gene on a direct to consumer test. Now, what people

• 1:30:55Speaker 00

  Don't understand is that the methods used by some of the direct to consumer companies, they're not clinical grade, so they're not as reliable as the test that you have when you, if you saw a geneticist in the NHS. So that's one problem. The other problem is that you cannot completely trust either a positive or negative test, because there's lots of different bracket genes, for example, and they only test for some of them.

• 1:31:18Rangan Chatterjee?

  Yeah.

• 1:31:18Speaker 00

  So a person might get a result back saying they're totally fine, but actually the test just wasn't very comprehensive. Or they'll get back a positive test and because of methodological problems, it's a false positive. So ultimately, you know, they're not terribly reliable. But the other thing I kind of need people to understand when you take one of those tests is you're not just taking it for yourself, you're taking it for your whole family. You know, if you discover you've got, you know, an ApoE4 gene that suggests you're at a higher risk of dementia, well then, you know, your brothers, your sisters, your cousins, your parents, your children, all of them potentially now have been drawn into this.

• 1:31:54Rangan Chatterjee?

  Yeah, you're bringing them in, so maybe they didn't want to even be brought into it in the first place.

• 1:31:58Speaker 00

  Yeah, you know, you're kind of taking the test for your whole family. And, you know, I spoke to one woman who tested and discovered that she had two ApoE4 genes, which immediately told her parents that they must both each have one. You know, they didn't need to test because they each must have contributed one to her. That's a lot to do to your family.

• 1:32:18Rangan Chatterjee?

  The flip side, however, is to sort of make sure we're being balanced is that some people will argue, and maybe this again is personality dependent, I want to know. Because if I know there are things I can potentially do with my life cell or get stricter on to reduce my likelihood.

• 1:32:35Speaker 00

  Yeah.

• 1:32:35Rangan Chatterjee?

  And I think that's, for me at least, that's very valid as well for something like that, where we know there are so many factors that we can potentially engage with if we have the time and capability to, that would reduce our risk of dementia. If you have this, it may incentivize some people, whereas other people might go, oh, what's the point of doing anything? I'm going to get it.

• 1:32:57Speaker 00

  No, you're absolutely right. I mean, it is know yourself again. It's sort of, because there are advantages to knowing, you know, that you can decide to. Sort out your financial future for your children, et cetera. If, you know, just in case, you know, it might affect your life decisions and obviously your health choices. So I can completely understand why a person would want to know. But I guess what I want people to do is just realise when they tick that box that, you know, all the implications so they can figure out who am I, how will I respond to this, you know?

• 1:33:29Rangan Chatterjee?

  Let's also talk about replacing our illness identity with a recovery identity. And again, you're very sensitive with how you write about this, but I think, and I've certainly experienced this, I've seen it many times where someone's illness becomes their identity. And I can understand why as well.

• 1:33:50Speaker 00

  Me too.

• 1:33:50Rangan Chatterjee?

  I really can understand why, but it doesn't tend, in my experience, it doesn't tend to help you in the long term. What's your take on this?

• 1:33:59Speaker 00

  Yeah, so sort of, I think when we talk about illness as identity, people always kind of think of behavioural conditions or autism or ADHD. But I've actually, in the book, described a study that looked at people with cardiomyopathy, who, so cardiomyopathy and inherited heart problem. And they did an assessment of these people for how strongly they identified with their illness. And they call it engulfment. So some people were kind of engulfed by their identity as being a person with cardiomyopathy. What was really interesting to note is that the people who really identified very strongly with being cardiomyopathy patients had more healthcare needs.

• 1:34:42Speaker 00

  They went to the hospital more, they needed, had more casualty presentations, they had more symptoms than people with worse heart disease. So it actually, you were more symptomatic if you identified very strongly with cardiomyopathy than you were if you had worse heart disease or even psychiatric symptoms like depression and anxiety. So identifying very strongly with an illness can heighten your symptoms because it sort of focuses you on your body. And it gets in the way of recovery. You know, if your illness is your identity, then how do you move forward?

• 1:35:18Rangan Chatterjee?

  Yeah.

• 1:35:19Speaker 00

  Or if you're part of a group who also have that illness and your belonging within that group is predicated on you. Having that illness and talking about that illness, well then, how do you move forward?

• 1:35:32Rangan Chatterjee?

  Yeah, there's this real tension, isn't there? But like, let's say, having a having a label, right? A label, a diagnosis can make you feel validated. And you go, yes, I knew there was something wrong. At the same time, it could also potentially trap you and make you think that's the entirety of who you are. There's like a tension there. There's a tension there with your potentially for some people where having this illness means I've got this strong community support. But I could only be part of this community as long as I have this illness. And it's, again, there's no easy answer here, is there? But there is this kind of fine tension we have to navigate.

• 1:36:09Speaker 00

  Yeah, you have to believe, you have to be able to visualize recovery to recover. I wrote the story of, he's a professor of infectious diseases called Paul Garner. And during the COVID pandemic, I mean, he's an infectious disease specialist. So he got COVID and because of his specialist area of medicine, he thought he knew what would happen next. He thought, well, I'll be sick for a couple of weeks and then I'll get better. But he didn't get better. You know, his symptoms were persisting for weeks and he found this quite disorientating. As a specialist, his belief system was always just that you get a viral infection and then you get better. So he began researching on the internet and he found a lot of other people who had long COVID, who all were in the same position as him. They were not getting better.

• 1:36:54Speaker 00

  And he became very integrally involved with the group. And they all talked about how you had to learn to accommodate to your symptoms, rather than trying to overcome them. So it became a sort of a group that was very sort of intent on the idea that you didn't do too much and that you you paid attention to your body and paid attention to your symptoms. But because he was a kind of research doctor, he thought, okay, this, I see that this is actually making me feel a little bit better, but it's not helping me recover. So I'm going to look for other types of recovery. And he found another group who also had similar chronic symptoms after a viral infection, but they were called Recovery Norway. So

• 1:37:35Speaker 00

  they were based in Norway. Their their group was centered around recovery. The other group was centered around. Living with the difficulty of the symptoms. And as soon as he encountered this recovery group and they they helped him to see his problem differently. You know, he he stopped checking himself for symptoms and worrying about the things he couldn't do. And shortly after meeting that group, he made a full recovery. So the kind of moral of the story is that, you know, you do. Not everything is recoverable, of course, you can't recover from everything, but you have to have an idea what recovery could look like. If you're going to recovery and if illness is too central to your life and too central to your identity, that might be hard.

• 1:38:17Rangan Chatterjee?

  Yeah, it's kind of interesting. You know, the first time I came face to face with this illness identity that I that I can remember at least is in 2015. And at the time, I had this BBC One documentary series called Doctor in the House. Where I went and lived alongside families for Porta Sit Suites who who were sick. And there was a lady called lovely lady called Nicola. And actually, her case speaks to so many of the themes in your book, actually. So she had fibromyalgia, okay. She had basically accumulated diagnoses. Multiple diagnoses from multiple doctors over her life. Okay, and to the point where when, you know, I see her for the first time.

• 1:39:02Rangan Chatterjee?

  And she can't work, she can't even walk, I don't know, 100 yards. She's exhausted, she can't be the mother to her children the way she wants to be. And basically, she has a diagnosis. I think she had fibromyalgia, ME, Irritable Bowel Syndrome, depression. There was there was 10 that I can't even remember them now. There were 10 different diagnoses. And I was remember trying to get us get my head around this case thinking. What would happen if we just put all these labels to the side for a minute? I just could pretend pretend there's no label here. And I I went through this with Nicola, we had this, we did this analogy with a train set and we got rid of all these labels. One more one and said Nicola, for that series, let's start from scratch.

• 1:39:43Rangan Chatterjee?

  Let me just focus on you and let me see if I can help create health and focus on the creation of health in you. Quite a controversial concept when we're used to diagnosing people, but you know, I'm not kidding you, after six weeks, she was completely pain free for the first time in 10 years. When I first saw her, she was on 20 pills a day, Suzanne, 20 pills a day, right?

• 1:40:05Speaker 00

  Yep.

• 1:40:06Rangan Chatterjee?

  Two years after I first saw her, she was on zero pills a day.

• 1:40:10Speaker 00

  Wow, that's incredible.

• 1:40:11Rangan Chatterjee?

  So that six week period I spent with her, one of the things I think I helped, you know, I don't want to take credit for this, like ultimately I believe patients get better, right? I would just provided the kind of environments and I helped her believe in herself. I helped her believe that their, you know, recovery was possible, that it was possible to try different things. And it really, A, it's a remarkable story that shows the power of when we just park the labels for a moment and give people the possibility of recovery. What can happen? But the point I was trying to make relating to this illness identity is when that show came out, Suzanne,

• 1:40:51Rangan Chatterjee?

  and you know, about five million people watched it. And yes, there was loads of positive comments on Twitter, but then I started to get viciously attacked by a certain community. And then I noticed something. I noticed that everyone who was attacking me, and I wrote about this in my, in my latest book, I, I noticed that they all had handles.

• 1:41:11Speaker 00

  Yep.

• 1:41:12Rangan Chatterjee?

  Fibrotash, Fibro Jane, Fibro Sally. And you know what? Instantaneously, I was like, oh, I get it. It's too much. But actually I did turn around Suzanne and have compassion because I thought, oh, I get it. Your whole identity as a human has become your illness. Do you know what I mean?

• 1:41:30Speaker 00

  Absolutely.

• 1:41:31Rangan Chatterjee?

  Which I think speaks to these ideas.

• 1:41:33Speaker 00

  I mean, I've noticed that also with people on social media.

• 1:41:36Rangan Chatterjee?

  With your book.

• 1:41:36Speaker 00

  With their bios are always about their illness and their names are about their illness. But the difficulty, you know, the bravery of that woman that you, you, you helped is incredible. Because if you do get better. You have to live with the possibility you could have got better 10 years before. You know, there's a lot of really hard psychological humps to get over to get better.

• 1:42:01Rangan Chatterjee?

  And it can be hard to get better as well.

• 1:42:04Speaker 00

  Not everything is recoverable.

• 1:42:05Rangan Chatterjee?

  Not everything is recoverable, and it can be challenging. And, you know, Nicola had me for six weeks going through everything with it. That's not a practical solution for people.

• 1:42:15Speaker 00

  No.

• 1:42:15Rangan Chatterjee?

  Right?

• 1:42:16Speaker 00

  Hadley Freeman, the journalist, wrote a biography recently, I think it's called The Good Girls. And it was about her, her fight with anorexia. I mean, she's such a successful lady now, you would never tell that when she was a teenager, she was hospitalized for long periods with anorexia. But she described something very powerful in her book in which, you know, for a long time, she was in hospital just with other people who were very sick all the time. And she had to suddenly, one day, look around and just think, okay, I'm going to imagine a different kind of future. Again, yeah, I'm, listen, everyone, illnesses, we can't all overcome them. But if you want to overcome it at all, then you have to imagine what a different kind of future would be. Actually, Ellen Langan is her name.

• 1:43:01Speaker 00

  She said something to you that I thought was really interesting, which was she was talking about people with chronic pain who were in pain all the time.

• 1:43:10Rangan Chatterjee?

  Yeah.

• 1:43:10Speaker 00

  And she kind of said to them, well, are you in pain all the time? Like every single moment and start paying attention to the moments of the day when you're not in pain. I found that so profound.

• 1:43:21Rangan Chatterjee?

  It is, because what, what that does for people, right? When you, when you tell yourself, oh God, I've always got this pain, oh, I've always got it, right? As soon as you break through that story, you go, well, I've got it most of the time, but I don't have it all the time.

• 1:43:36Speaker 00

  Yeah.

• 1:43:36Rangan Chatterjee?

  In some ways, that's one of the most profound realizations. You just, you just start to shake the foundation upon which that identity is built. It's pretty fascinating.

• 1:43:45Speaker 00

  When she said that, I, it was so simple, but I still kind of went, what? You know, it was, because it was such an amazing, it's so simple and yet so important. Yeah, absolutely, yeah.

• 1:43:56Rangan Chatterjee?

  Suzanne, listen, I could talk to you about this for, for hours. I think we've not even scratched the surface of what's in your book. There's so many powerful ideas, you know, the kind of. The over-medicalisation sometimes are basic human struggles. Expanded definitions are turning millions into patients. Diagnoses are becoming a social identity. We've covered some of that. You know, we're medicalising normal entire life stages. And then we didn't cover this today, but you know, I've even spoken to people on this podcast before who call aging a disease.

• 1:44:28Speaker 00

  Yeah.

• 1:44:28Rangan Chatterjee?

  You know, and it's interesting and I understand their rationale for doing it, but we are at risk of medicalising normal entire life stages. And also this powerful idea you write about that medicine in some ways might be fuelling perfectionism. Right, which is really powerful. Look, there's, there's all kinds of things in your book for people to get stuck into. I, I've got to say, I believe some people will push back at some of these ideas. But I think you've written it so beautifully and so compassionately to get across these ideas. And I think if we don't talk about these things, right? Where do we end up in 20 years if we keep diagnosing at this rate? Very soon, being well will be in the minority.

• 1:45:09Speaker 00

  Yeah, I mean, these, I know these are difficult conversations, but what I would just like us to do is not be afraid to have that conversation.

• 1:45:17Rangan Chatterjee?

  Yeah. Yeah, and that's one of the reasons, A, I love a lot of these ideas. I've been very aligned with some of these concepts. But I also believe, as you say, we have to be having these conversations. It's, it's so important. What is the kind of main take home you want people to get from this book?

• 1:45:40Speaker 00

  Yeah, so what I really would love is, I want for young people, I want us to be able to help their struggles, but still leaving them with kind of any kind of future for them. You know, I started the book with the story of Abigail and Stephanie. And Stephanie, the mother, who had the genetic diagnosis at the age of almost 50. You know, I said, do you regret that it took so long to have that, get that diagnosis? And she said, no, because she had a free life. She, she allowed herself any kind of ambition. She believed anything was possible for her and she really valued that. So I want us to, to think about labels and diagnosis a little more carefully so that as much as possible, we allow people to have that kind of free life with any kind of future.

• 1:46:23Rangan Chatterjee?

  Yeah, love that. And for any doctors who pick up this book, and I really, you know, I think it's, it's definitely a book for the general public. But I think a lot of doctors would be very well served to read this book because it will, I think, provoke some very important questions for them to ask themselves. Some will be comfortable, some might be a little bit uncomfortable, but nonetheless very, very important. What would you like doctors to take away from this?

• 1:46:51Speaker 00

  Yeah, I'd like, you know, as I'd like, so a patient, I spoke to a patient who had seen private doctors who did loads of tests that I would consider irresponsible. You know, she got excessive tests, excessive medical care. I thought it was terrible from people who I felt were sure were profiting from her. And I asked her, I said, listen, you know, every person I spoke to for the book, I said to them at the end, what's the message you would like me to get a course for you? And she said, I want you to learn from my private doctors. Now, this was a little shocking for me because I felt like they had given her not particularly great care. But then after I thought about it, I realized that she did get something very important from them. Forget the tests for a moment.

• 1:47:34Speaker 00

  What they really helped her with was they listened to her, they made her feel believed, they made her feel cared for. And yes, perhaps their practices were unconventional and I would not supporting that. But, you know, we as doctors need to learn that, that, you know, there's a quality diagnosis comes from a good consultation and time spent with the doctor. And I think we need to not, you know, rely so heavily on investigations and modernity and high tech and remember that good medicine is in-person time spent listening and hearing.

• 1:48:05Rangan Chatterjee?

  And of course, that's very difficult for many doctors in the current system. But it also, also going back to medical school, what did we all get taught? A good history.

• 1:48:15Speaker 00

  All the time.

• 1:48:16Rangan Chatterjee?

  You get the diagnosis from a really good history. And the truth is, you do.

• 1:48:19Speaker 00

  Yeah.

• 1:48:20Rangan Chatterjee?

  You do. If you pay attention, you listen carefully, the patient will tell you most of the time. Everything you need to know. I really believe that.

• 1:48:28Speaker 00

  Yeah, absolutely. And I do honestly believe that, you know, doctors have the same, most doctors have the same concerns. I'm the person who's saying this out loud, but I don't believe I'm alone in this at all.

• 1:48:37Rangan Chatterjee?

  I don't think you are either.

• 1:48:39Speaker 00

  I feel like I'm so lucky. I'm a specialist doctor. I could, if it needs, if I have to spend an hour with a patient when I meet them the first time, I can spend an hour. You know, imagine having to do that same skill in five minutes or 10 minutes. I feel for GPs and I really hope that when people are developing the health service, that they say, let's use AI to free up time so these doctors can do the job they were trained to do.

• 1:49:03Rangan Chatterjee?

  Yeah. Well, Suzanne, listen, I think it's a very thought provoking book, a very important book. Thank you for making time to come on my podcast.

• 1:49:10Speaker 00

  And thank you for having me.

• 1:49:16Rangan Chatterjee?

  Really hope you enjoyed that conversation. Do think about one thing that you can take away and apply into your own life. And also have a think about one thing from this conversation that you can teach to somebody else. Remember, when you teach someone, it not only helps them, it also helps you learn and retain the information. Now, before you go, just wanted to let you know about Friday Five. It's my free weekly email containing five simple ideas to improve your health and happiness. In that email, I share exclusive insights that I do not share anywhere else, including health advice, how to manage your time better, interesting articles or videos that I've been consuming, and quotes that have caused

• 1:50:00Rangan Chatterjee?

  me to stop and reflect. And I have to say, in a world of endless emails, it really is delightful that many of you tell me it is one of the only weekly emails that you actively look forward to receiving. So if that sounds like something you would like to receive each and every Friday, you can sign up for free at drchatge.com/fridayfive. Now, if you are new to my podcast, you may be interested to know that I have written five books that have been bestsellers all over the world, covering all kinds of different topics, happiness, food, stress, sleep. Behaviour change and movement, weight loss and so much more. So please do take a moment to check them out.

• 1:50:41Rangan Chatterjee?

  They are all available as paperbacks, ebooks and as audiobooks, which I am narrating. If you enjoyed today's episode, it is always appreciated if you can take a moment to share the podcast with your friends and family or leave a review on Apple Podcasts. Thank you so much for listening. Have a wonderful week and please note that if you want to listen to this show without any adverts at all, that option is now available for a small monthly fee on Apple and on Android. All you have to do is click the link in the episode notes in your podcast app. And always remember, you are the architect of your own health.

• 1:51:22Rangan Chatterjee?

  Making lifestyle change is always worth it because when you feel better, you live more.