Over-Diagnosis: Are Too Many People Being Given Medical Labels? (Dr Suzanne O’Sullivan)

22:36I think that prostate cancer is particularly prone to overdiagnosis because the PSA test that we currently use just isn't that reliable. So prostate, you know, there is a reason that the government does not recommend that we have standard prostate screening with PSA. and that's because so many people would be treated unnecessarily. In the breast cancer, people are also treated unnecessarily, but at lower rates, which is why that has been tolerated. But what I would say is the solution to this is probably twofold. First of all, screening is more useful in high-risk people. So you gave the example of someone who is black who had a family history of prostate cancer.

23:16That's a high-risk individual. If you take somebody with a high risk of developing a disease and you screen them for it and you get a positive test, then you are doing a much more useful type of screening than a type of screening that takes loads of low-risk people and applies the same test to them. So I think the first thing we can do is screen high-risk individuals and that will make screening a bit more meaningful. But I think the other thing we need to do is kind of make some sort of distinction between a cancer found on screening and a symptomatic cancer. So the moment if you go in and you have breast cancer screening and they find some abnormal cells, you will be told that there are cancer cells.

23:58Now, what would anyone do in response to that? You would immediately be terrified and say, you know, give me everything, throw the book at it, you know. Whereas these using the same phrases, using the term cancer for a screened abnormal cell and symptomatic cancers is, I think, problematic. What would be better is that if we had a slightly different name for these screen cancers.

24:21Amol Rajan:That distinction is obviously very, very useful. But just, I mean, without kind of getting into the impossibility of utilitarian judgments, wouldn't, would it be worth 10, to take the example of prostate cancer, 10 blokes being treated wrongly for having abnormal cells in their prostate if it saved one person from prostate cancer? And that in turn depends on whether the one person you save from prostate cancer is your dad or not. And isn't there an upside to over-diagnosis and over-medicalization, which is the social, and obviously we'll come to the downsides as you see them and argue in your book, but that hyper-awareness can make people lead healthier lives.

25:00Amol Rajan:For instance, just to give one example of it, my dear beloved dad died partly of complications of type 2 diabetes. I've been overweight most of my life. I know I don't look at Suzanne. I look incredibly fit and healthy. I was about to say that. Yes, exactly. A rippling torso of extreme physical exuberance. If you're South Asian, if you've been overweight, and if you're over 40, you put in your kind of know your risk score and the NHS thing, chances are me getting type 2 diabetes are high. Watching my dad die with a bunch of tubes coming out of his body during Omicron, I decided to get fit. And this has been a great spur to me.

25:35Amol Rajan:The danger of someone saying you've got a risk of being type 2 diabetes has been a spur to action. Isn't it useful for us to have a better understanding of our potential ailments in the future if it makes us lead better lives now? I guess it depends, first of all, on what intervention you're talking about. So let's say, you know, if we're talking blood pressure screening and the outcome of, you know, again, we're talking similar sort of statistics to prevent one stroke, you treat 150 people. but you know the harm to those 150 people well I would suggest that we neglect it but you know it's mostly people becoming more mindful about their health etc so one can live with that and but can can one live with them having a prostate operation that potentially foreshortens a person's life through complications or causes impotence you know I think we don't we don't think about these 10 people enough.

26:28And it may be that a person would still have the screening knowing that these sort of statistics exist, but I suppose my problem is they don't know. So how many women who go for breast cancer screening or prostate screening realise that they could actually enter what we call a watchful waiting programme, meaning not every cell that you find on screening will grow into a malignant cancer. You don't have to panic immediately like you would with a symptomatic cancer. What you could do is say to your doctor, well, will you do another scan in three months' time and then three months after that? And if this thing is just not changing, then perhaps I'll just wait.

27:06So it's not so much that we should say, well, let's stop screening. We need to be more public about this sort of over-diagnosis, over-treatment. People may still choose it.

27:16Amol Rajan:And give people better information, for instance, about the kind of watchful wait scheme. Can I just ask you just to lay out a couple of other aspects of your argument? And one way of doing this, I want to ask you about the role of the pharmaceutical industry and whether or not we have a generation of snowflakes, which is a term that you usefully avoid. But it's one of the things that people listening to this, I know because they've messaged me, want me to ask you about. Before we get there, one of the arguments of your book and other podcasts you've done is that this tendency towards overdiagnosis, for reasons you're humble enough to admit you don't fully understand, does seem to afflict women more.

27:49Yeah.

27:49Amol Rajan:A couple of possibilities. You say women's bodies are noisier, menstruation's a monthly thing. Why might it be that this is more of a female phenomenon? I mean, I absolutely don't want to pretend that I know the answer, but I certainly think that women are more inclined to sort of be victim to this kind of over-labelling. You call it a gathering of labels. Yeah, and I think a little bit of it is cultural, societal. You know, that women, although things have changed a great deal for women, women have difficulty getting their voices heard sometimes. You know, there certainly is a neglect of women, of conditions that only affect women like endometriosis.

28:29So a way for a woman to be heard is through these labels sometimes. So I think they give a woman a voice and they give an opportunity for somebody to ask for help in a culturally salient way that tracks the kind of help that a person wants or needs.

28:49Amol Rajan:I was going to say perhaps the people with endometriosis would say that seeing it from their point of view, they desperately need that help. And we've not understood the pain that they're going through until recent years. And it's about time, if you think, I mean, when I read about this, I think there's centuries of women who suffered basically in silence, going through terrible pain. Isn't there kind of a social benefit to the fact that we do give salience to those voices and we do say that your hurt means something. Well, I think the, so I'm not saying, by the way, endometriosis is overdiagnosed.

29:19I'm saying that conditions like that that were neglected are an example of the way women's voices haven't been heard. But the solution to that is not to apply as many diagnoses as possible to women so they can now catch up with men, but rather to improve diagnosis and to improve your listening to women. So we don't need really to...

29:41Amol Rajan:You shouldn't require a diagnosis for that voice to be heard. No, that's what I don't understand is why do we need it? One other aspect of this is pharmaceuticals. To what extent is it the case, there are people who think this, that over-diagnosis and the move towards medicalisation is a problem of capitalism rather than culture? In other words, a few mostly very big, very powerful firms stand to gain enormous amounts of money from medicalising everyday life. Do you know, people always ask me about pharmaceutical companies at festivals and things. And I always kind of, I am not someone who believes that there's some terrible great capitalist conspiracy that has caused this.

30:22I'm not saying the pharmaceutical companies play no role whatsoever, but I would consider them opportunists rather than the cause of this problem. So if you look at it doesn't matter, there's no drug for autism, but autism diagnosis are growing exponentially. So you don't need a pharmaceutical company to be there for this to happen. I think that it's much more come from a scientific medical drive to find more diagnosis that is then being met by people desperate for answers. And then these people are looping back into each other. You know, I, the doctor, am desperate to give you an answer. So you, the patient, are desperate to get an answer.

31:01And together we've kind of created this situation. And then you have outside forces coming along like pharmaceutical companies who I consider to be more opportunistic on a situation that's been created by society, doctors society and patient society.

31:16Amol Rajan:Let's get into neurodiversity and address it very head on. are more people in say British society in the year 2026 more people neurodiverse by which we actually mean a diverse number of things for instance ADHD and autism are there more people who are neurodiverse or are more people claiming to be neurodiverse who in fact are not so let's just start with this neurodiverse term so that's not a medical term it came from a sociologist who described this idea that, you know, everybody is diverse. And she created the term neurodiversity to kind of give respect to the concept that there are people who are more diverse than others, for example.

32:00So a lot of people now would consider themselves neurodiverse, but that's not medical. But if we look at neurodevelopmental conditions, autism and ADHD, those diagnoses have risen exponentially. I mean, autism used to be diagnosed at a rate about one in 2 ,500 children, let's say 50 years ago. And now it's closer to kind of one in 36 children or one in 100 adults.

32:25Amol Rajan:Why has that rise happened? This rise has happened not because there are more people who are autistic, but because we have changed the meaning and the description of what autism is. So if we go back to the 1960s or 1940s, autism was someone who was described as severe autistic aloneness, someone who was 0 % interested in people, who was nonverbal, who was learning disabled. And then we move into the 1960s and someone said, you know, I think I recognise the characteristics of autism being communication problems and obsessional kind of traits. Inability to make eye contact or preference not to make eye contact.

33:05Or repetitive behaviours. I think I'm seeing those things that you described in these severely disabled children, I think I'm seeing them in less disabled children. And therefore autism became a spectrum that was now being diagnosed in much milder forms. And then we move forward and people say, well, I'm seeing this same traits in people without learning disability who are not, who don't have them, who can speak and are able to communicate. So every kind of couple of decades, we slightly relax what we understand autism to be. And then every time that we get a new edition of the DSM, the Diagnostic and Statistical Manual of Mental Disorders, we slightly relax the diagnostic criteria to allow the diagnosis in people with lesser difficulties, more atypical difficulties in older people.

33:52So we don't have more people with what autism is. We are diagnosing more people because of how we change the criteria.

34:00Amol Rajan:Is that possibly because we massively and radically underdiagnosed it in the past? Do you know, I don't doubt that we've underdiagnosed it in the past. If I think about my own school years, let's say 70s, 80s in Ireland, you know, my class of 120 people, was anybody recognised have any special learning need of any sort? They weren't that I knew of. And there must have been kids who would have benefited if they'd got extra support. So I don't doubt for a moment that people used to be neglected. But we're back into this situation of desperately looking for more and more people in order to correct that neglect.

34:34I would suggest that we've long ago corrected that neglect and we've wandered heavily into over-diagnosis.

34:40Amol Rajan:Isn't it a good thing if they've been accurately diagnosed? And can you see how, even if we might have an urge towards sometimes over-diagnosis, it might be a sort of over-correction for the fact that we're so under-diagnosed these people who desperately needed to know earlier? Let's think about over-diagnosis and this idea, and I hear this all the time, that somebody who's had a terribly difficult life, Like I spoke to a young woman when I was writing this book called Poppy, and she's now in her 20s. You know, she'd had mental health problems since she was 12. She began self-harming when she was about 12.

35:16She tried to take her life, her own life when she was 13. She'd had anorexia. This was in the background of loads of social problems, bullying. She was grappling with her sexuality. She suffered an assault that went as far as police action, etc. So loads of big, big, big things happening in her life and very serious mental health problems running alongside them. She tried loads of different therapies and she didn't find that they helped her a lot. And then her mid-twenties, she got a diagnosis of autism and she felt enormously validated. Now, this is something I hit against all the time is this feeling of validation and understanding and how great it feels to a person.

35:59And I definitely don't want to take that away from anybody. So I don't want anybody who feels validated by a diagnosis to worry about anything I'm saying. If it's helping you, it's helping you. But I still think we have to challenge the idea of being validated by a diagnosis a little bit, especially in younger people. because if your understanding of yourself is through the language of biology and internal brain networks and let's remind ourselves that autism is a neurodevelopmental brain disorder it is a disorder of the brain and if you understand yourself through the concept of a brain disorder that has the potential to be very limiting for you going forward doesn't have the

36:43Amol Rajan:potential to be emancipatory as well i interviewed name drop for a second forgive me I interviewed Greta Thunberg and she's got Asperger's by the way people describe it people say Asperger's and Asperger's and I've looked it up so many times I'm going to say Asperger's she described it as Asperger's she said it's her superpower it's allowed her to have this hyper propensity to focus I cover technology companies for a living I was a media editor for a long time spent a huge amount of time in Silicon Valley Silicon Valley if you ask Bill Gates by the way Bill Gates who kind of said to me she hadn't really said before that he was probably on the autism spectrum You know, people who run big technology companies, including Elon Musk, who's got Asperger's and spoken about it.

37:22Amol Rajan:They sort of celebrate it now. Hasn't some good come of all of this? We sort of, you know, understanding yourself through, as you said, neurodevelopment disorder can also be an emancipatory thing. Because you think as a society, we're saying, great, you've got this special ability. Go for it. So we're back in the territory of like, of course, some good has come. But has the good been outweighed by the harm? And I would suggest it has. I think often in these conversations, we talk about, you know, who has autism now? Anthony Hopkins, Greta Thunberg. Elon Musk. You know, these are exceptional people.

37:57And these are, you know, I don't think that they're very representative of the community. And we now have this, you know, and it's not terribly helpful, I don't think, to, you know, I hear a lot of people who are very successful people in the media industry, in comedy, etc. declaring their diagnosis in a way that is in this kind of superpower kind of language. But you know what is going to happen to the average 16-year-old who's given one of these diagnoses is that they will not become a worldwide famous figure who gets a stand-up comedian tour and a book deal.

38:34Amol Rajan:But why couldn't it be helpful to them? Well, it could be helpful to them, but it could also be harmful. And that's what we need to understand. So what happens to a person who's 16 and you conceptualize their difficulties through this language of a brain disorder, then you are immediately making concrete something that they cannot do. You cannot do it because you have a brain disorder, which immediately makes it feel insurmountable. You can completely change a person's identity. Have you seen that? All the time. I mean, within my own clinical practice, so I'm a full-time NHS doctor and I see people who have complex kind of brain diseases and multiple other diagnoses.

39:16And my own personal, this is anecdotal, but my own personal experience amongst my patients is that these diagnoses lead nowhere beyond that moment of validation. And when I was researching this book, The Age of Diagnosis, every single person I spoke to who had been diagnosed as an adult with ADHD or autism felt enormous validation. They absolutely would not agree with me if we were to have a discussion with me saying, I fear the diagnosis done you more harm than good. But every single person, like this young woman I mentioned a moment ago, Poppy, who got a late diagnosis and felt validated, all sorts of kind of support was given to her on the basis of an autism diagnosis.

39:59She went to college to study marine biology and she was given extra time and different sorts of support. But she ended up dropping out of college anyway because the support really wasn't the answer. These diagnoses, first of all, they're getting in the way of an examination of life. So what Poppy might, you know, Poppy's life was incredibly difficult. And I did not feel that it was very helpful to her to locate her problem as an internal fixed biological problem in her brain, which seemed to distract somehow from the bullying, the assaults and the terrible things that had happened in her life.

40:32And this really worries me is that we are almost kind of, I know that people feel like these diagnoses are relieving them of blame, but I sometimes see it as actually the opposite. You know, it's you are subject to this kind of abuse or this terrible thing happened to you because you are vulnerable because of your brain disorder.

40:52Amol Rajan:You're saying that more people actually don't have this kind of superpower moment a la Elon, Greta, Chris Packham, Bill Gates. more people because with autism Simon Baron-Cohen makes a distinction between um autism as a difference and autism as a disability and I suppose the people I'm thinking of who I've interviewed about this are celebrating their difference and trying to turn it something positive but for other people it's maybe more at the disability end of it and it's something that traps them almost yeah the difficulty is that you know if the minute what you should be saying to a child is this is what you're good at.

41:29But what a diagnosis sometimes says is these are all the things you can't do. It also makes promises to a child that I don't think the world will keep, which is it says now you have this diagnosis, you can go out into the world and say I have these special needs. Can you please change the world to accommodate me? That's a very romantic idea. And I know that in schools it is happening to a certain degree that we give people extra time or we give people quiet rooms and universities that will continue. But will it continue into the workplace. Some people should say, will say it should, it just should.

42:00But unfortunately, a better, I don't think it will. And I would suggest a better way of supporting children is to help them, first of all, if they're bad at certain things, help them to figure out if they can overcome them. And if they can't overcome them, help them to find their place in the world, a place that suits them, rather than asking them the world, giving them the really unrealistic expectation that the world will bend over to accommodate their difficulties.

42:34Amol Rajan:I really hope you're enjoying this conversation with Dr. Suzanne O'Sullivan, the author of The Age of Diagnosis. If you are, and in fact, even if you're not, please do us a favour and subscribe to Radical with Amol Rajan. Just head to BBC Sounds, search for Radical with Amol Rajan, switch on your push notifications and that way you'll never miss out when a new episode is released right enough for me and back to suzanne o'sullivan

43:01Amol Rajan:hi this is alex kantrowitz i'm the host of big technology podcast a longtime reporter and an on-air contributor to cnbc and if you're like me you're trying to figure out how artificial intelligence is changing the business world and our lives so each week on big technology I bring on key actors from companies building AI tech and outsiders trying to influence it, asking where this is all going. They come from places like NVIDIA, Microsoft, Amazon, and plenty more. So if you want to be smart with your wallet, your career choices, in meetings with your colleagues and at dinner parties, listen to Big Technology Podcast wherever you get your podcasts.

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44:25Amol Rajan:there's a wonderful story in your book about a woman called Valentina who I just wondered if you could recount um uh briefly for us because what you're partly talking about we'll get into the social effects in a moment but you're talking about what individuals equipped with knowledge of themselves can and cannot do when they approach the world and how it too much knowledge almost over diagnosis can make them approach the world in a way that's suboptimal and valentina kind of embodies this yeah so valentina is this incredible woman um when she was 28 she was pregnant with her first child and she discovered that her mother had huntington's disease now huntington's disease for those who don't know is a genetic condition it if your parent has it, you have a 50-50 chance of getting it.

45:09It is a neurodegenerative condition that's really quite distressing to see, distressing to experience. It can often begin with personality change, psychiatric symptoms that are a little bit kind of overlap with human experience, but then get worse and worse. And you get physical disability, you get involuntary movements. And it declines over, say, 15 years until you're at the point where you have a severe dementia, you can't move, you can't swallow, you can't speak and it foreshortens life. Now when Valentina learned that her mother had this condition she instantly went from being a perfectly healthy woman to having a 50-50 chance of getting Huntington's and worse still her unborn child immediately had a 25 % chance of getting Huntington's.

45:54So you can imagine how absolutely devastating that was for her. Now there is a genetic test, she could have instantly had a genetic test to find out if she was positive or negative. She met a genetic counsellor, someone experienced in helping her to understand whether that test would be useful to her, and she decided against it. She realised that if she had the test and it was positive, you know, this was her first child she was expecting, it would massively overshadow this huge experience. So she decided, you know, to live with the hope that it would be negative would be better than living with the certainty it was positive.

46:28She got on with her life. She had a second child. And over the years, she continued to choose not to test because of the implications it would have had for her kids. If she tested positive, their risk would immediately go up. And because she wanted to just enjoy living her life. But over those years, she also began to get lots of symptoms of Huntington's. We've got to keep in mind she'd seen exactly what happened to her mother. so she noticed her mother first had personality change and then Valentina realizes she's getting more sort of easily angered and she starts getting into fights with her husband which she wouldn't have done earlier in the marriage then she began to notice physical changes she's bumping into things she notices she can't plan and she gets easily flustered every time she walks into an airport the multitasking was just too much for her she'd just fall apart it's overwhelming yeah And this kind of, she kept, she could feel these symptoms.

47:24Her sister had identical symptoms and tested and was positive. Valentina was aware that she was declining. She waited until her kids were both 18. So this is about 20 years after her initial learning about her mom. And she realized she was so symptomatic, she was becoming disabled and she really needed to test. and she discussed it with her kids, explained the implications to them and went and had the test during the pandemic. And I mean, it was so moving. She described to me the moment of getting the test results and she went into the hospital. During the pandemic, the doctor was wearing a face mask and she's desperately trying to read the doctor's expression as they come down the corridor.

48:04This moment she's waiting 20 years for, you know, she's been thinking about. It was huge. And then she walked into the clinic room and the doctor pulled down the mask and the doctor started smiling and she knew instantly the test was negative. She did not have Huntington's and every symptom that she thought was due to Huntington's was not. Now, I start the book with that story because it was so powerful and it's so important to me for people to understand how your relationship with your body changes, not just with a diagnosis, but even with the threat of a diagnosis. And this is a real biological phenomenon I need people to understand because I think some people would hear Valentina's story and they would think, oh, she was imagining it.

48:44You know, it wasn't real. The symptoms weren't really there. These were real symptoms that were really bothering her. And the way that these manifest is, you know, our brains are expectation machines. They interpret the world the way we expect the world to be. So if you expect to feel a certain, we're back to the placebo-nocebo effect again. If you expect a certain physical change in a certain situation, you might experience it. And when you start paying attention to your body, there is so much to be noticed that you don't notice when you're healthy. So, for example, everybody fights with their husband.

49:21But, you know, this became something that was really heightened in Valentina's awareness because she'd seen it in her mom as an early sign of the disorder. Everybody hates airports. So she noticed these things. And once you notice them, that heightens them, that activates your body. And you get into a loop.

49:40Amol Rajan:You kind of amplify. It's precisely that. You know, the more you notice, the more you worry, the more you notice and so forth. What's the moral of the Valentina story? The moral of the story is to understand that a diagnosis or a medical label changes your relationship with yourself and changes your relationship with your body. The Huntington's disease community, only about 10 % of people who could have that test have the test because that community have learned that there is great value in living with hope. there is great value in living with the possibility of any kind of future how do you feel about the as it were we'll come back to this sort of scientific um or the pushback from the some parts of the scientific community and other people have been in touch with me in a second but the politicization of your book so did you kind of want when you wrote this book to address the broader issues around for instance welfare and neats and the huge rise in disability and sickness benefit you know my agenda in writing this book is entirely about improving the care for the kind of people i care for you know so i'm a doctor in full-time practice and i see you know i qualified in 1991 but just in the last 10 years i'm seeing increasing numbers of young people people in their 20s getting label upon label upon label and i have no problem with how many labels a person gets if at the end of it their lives are better or their symptoms are better but I just see people accruing labels and they're not leading where they should so I had no sort of political agenda of of any sort and I certainly don't find it terribly useful when we think about sort of the if I get drawn too much into the political agenda because then you know people mistake it for you know oh you want to save money I'm not trying to take anything away from people.

51:30I want better care, not to take anything away from people.

51:34Amol Rajan:I should say, reading the book, you're a doctor. You're a doctor with decades of experience. And I think there is a sort of, I think no one could doubt there's a sort of compassionate, a kind of graceful and caring approach and tone. But there are some people who hate the fact that you're here and the fact that I've invited you on and who hate me for it. And And I feel that it's important to give them their voice. And there are some people who won't forgive it. And by the way, I'm very conscious of inviting you on. We'll gain lots of listeners and we'll lose some as well. And I just want to put to you one kind of, if I may say, typical in the positive sense of it, response.

52:11Amol Rajan:Where some people have said, for instance, to me, they messaged me on Instagram, I'm not going to name this person because they may not have wanted to be named. I'm really sad to see her, as in Suzanne's views, brackets, not expertise in neurodivergence, platformed. By the way, there's a criticism of me there, which I'll address in a minute. I love your show, but she is not an expert on ND neurodiversity. Her hot takes are dangerous. She doesn't listen to ND folks who tell her their lives are better post-diagnosis and instead judges them for being less successful by her measures of being social and ambitious.

52:40Amol Rajan:And this is the bit that bites. Autistic people with no intellectual disability are nine times more likely to die by suicide. So this is not just an interesting take. It's damaging and genuinely dangerous. Let me address a bit of that that's directed towards me. And there are others who said the same thing. So the P word, by which I mean platforming. I find that people tend to use the word platforming when they say you're giving voice to someone who they disagree with. And there's often an argument on a technical or practical issue about, you know, should you have in the room at the same time, someone who has a different view.

53:11Amol Rajan:Just that point about having someone else in the room with a different point of view, it's just not practical. And sometimes I think it's suboptimal. And I think part of the job of journalism is to be informed and apply scepticism and scrutiny. Secondly, I do want to have a huge range of people on this podcast, including people that sometimes really piss off our listeners. And I think there's probably a minority in your case that will be pissed off and others who will approve of it. What about, so I make no apology for getting on people on this podcast who some listeners will disagree with. In fact, I actually, I'm sorry to say, I think there's a virtue to that.

53:44Amol Rajan:And I think that in the world, you're going to encounter people you disagree with. I hope I've applied some scrutiny to what you've said, and I'm going to continue to. What do you say to the argument, A, you're not an expert on neurodiversity, B, you don't listen to neurodiverse folks, and C, you judge them by your measures of being social and ambitious? Yeah. So, I mean, first of all, you know, I am a full-time neurologist. If anyone is qualified to talk about brain disorders, I would hope that I am. Many of my patients have severe autism. I totally agree. I'm not a researcher in autism, but I think something very interesting happened in the last couple of weeks, which was Uta Frith, who's extremely renowned scientist in the field of autism.

54:30I mean, many of the current researchers who are most prominent in this area, you know, were her PhD students. She is sort of the godmother of autism. She came out and expressed similar views to me recently, and she was immediately attacked. So somebody who doesn't like a particular person's point of view will find a reason to attack them, whether they are a very specific researcher in autism or whether they aren't. And I know that people who find my views difficult will find ways to try and undermine me. But I haven't heard any very convincing arguments that undermine my argument. I think that something interesting is raised in when you mentioned about suicides.

55:09I want to make it super, super clear that I'm not arguing that a person who currently has a diagnosis of autism has nothing wrong with them. I'm not arguing, you know, that we're talking autism. You can have a diagnosis of autism and if you don't, you know, get lost, I'm not going to help you at all. I'm arguing that we currently conceptualize lots of different kinds of suffering as autism and that it is the label and the conceptualizing something as a brain disorder that is the potential harmful bit. I would hope that a GP, a psychiatrist, a psychologist, a teacher, a parent, anyone would notice struggling to the level of suicidal intent without a label of autism.

55:50So my argument is not that, you know, I think we mentioned the word a little earlier, snowflakes or, you know, these people are complaining about nothing. I come from a place of assuming that someone's gone to the trouble of getting diagnosis, that that means something is bothering them and they definitely need support. The question I'm asking is whether that support is best served through a medical label like autism.

56:15Amol Rajan:What about long COVID? There's a chapter in the book in The Age of Diagnosis about Lyme disease and long COVID. Lyme disease is a whole other podcast. Let's focus on long COVID. Does long COVID exist? Yeah, so long COVID exists. The question is about the underlying pathological mechanism for long COVID. So I think it's useful for people to understand the kind of how the term long COVID and the condition we now call kind of post-COVID syndrome, long COVID, came about. It came about through a tweet. An Italian woman tweeted something about chronic symptoms in people who had mild COVID and she used the hashtag LongCovid and that was in May 2020.

56:56So this came about through a kind of a social movement in which people who were suffering in the pandemic, who had not been hospitalised, who had relatively mild COVID symptoms, were struggling with significant mental and physical symptoms. They came together as a movement on social media, which began in May 2020 and just took on enormous momentum. The term long COVID kind of sounds a little bit like it might have come from a medical person and that it was a medical concept. But actually, it was a social movement that was seeking to find support for people who were suffering in a different way during the pandemic.

57:36But it quickly found itself in the mouth of journalists and then politicians and then the scientific community. And what we now know is that long COVID is a very significant condition that has caused serious symptoms and disability for some people and that it seems to behave very, very differently to COVID. So COVID-19, it affected people who are older, who had comorbidities, who are often male, and people had a limited range of symptoms with it. Long COVID has a much wider range of symptoms. It affects a different community, you know, healthier people, younger people, less comorbidities, more women, less people with diabetes.

58:27So these are kind of different conditions. And through that, I would say that long COVID has many of the hallmarks of a psychosomatic condition. Now, the minute I say psychosomatic, people will just hear, there's nothing wrong with you. It's a dismissal. It doesn't mean that you weren't really suffering. I, as a neurologist, the sickest patients I see are people with psychosomatic conditions. These are real physical symptoms that arise out of a psychological mechanism. them there's lots of clues that long covid is not for everybody it's probably a mix of things but for a large proportion of people is psychosomatic for example there was a huge study um done in the uk on children and young people 30 000 people studied and they found that there was a greater correlation between loneliness and long covid symptoms than there was between sort of contracting

59:15Amol Rajan:the virus you will have seen in the bjgp which is the home of general practice of family medicine And it's a pretty punchy headline. It says your new book, The Age of Diagnosis, talks about her curious characterization of long COVID as a psychosomatic condition. Let me just, for our listeners, put to you what they say. This is written by a GP, this review. She talks about, as in you, talk about patient activists rather than advocates. And they say, your language is a giveaway. Activists conjures up the image of agitators, disruptors that need to be brought back into line. Advocates are simply people who stand up for people who have no voice.

59:48Amol Rajan:her suspicion about the expertise of patients runs deep. And then it says, the fact is she, Susanna Sullivan, could have found many people involved in pushing research in long COVID forward who are both medical doctors or medical researchers and long COVID patients. She argues that science must take precedence and ignores the huge research literature that makes the case for long COVID, most definitely not being a psychosomatic condition, cherry picking some research that seems to support her view. Yeah, I would say that I spoke to somebody who had long COVID who recovered, a professor of infectious diseases who had long COVID and then sort of really struggled because he was a professor of infectious diseases.

1:00:27He believed that you got an infection and then you just got better. And when he wasn't getting better, you know, he couldn't believe that his symptoms were that bad. And he found a community of people with long COVID and they advised him that, you know, he needed to stop dominating his symptoms and he needed to learn to live with them. and to rest more, etc. And that doctor, though, being a kind of scientist, sought other opinions. So first he followed this advice, which was accommodate to your symptoms rather than dominating them. And then he found a group in Norway called Recovery Norway, and they offered an alternative perspective, which is this hope of recovery through incrementally building up your activity.

1:01:11And he made a full recovery. So I put that story about long COVID in the book, But the difficulty is that he recovered and that's a challenge for some people. That's a challenge for the story of long COVID that says you will not recover. Recovery stories are quite difficult. And this is where I really struggle with illness, some kind of illness activism and also illness identities, which is if your identity is so interwoven to your illness that if you lose the illness, you lose your support group and you lose your identity, then how do you get better? So I told a story of long COVID in the book, but because it was a recovery story, it wasn't considered to be the right story per se.

1:01:55I think the biggest difficulty in this conversation is the minute you say psychosomatic, people just think, oh, well, that's just nonsense. You know, that means you were imagining it, etc. If we believed that psychosomatic symptoms were real and disabling and just as significant as a disease process, then none of these arguments would have to happen. What do you believe? I believe that the sickest patients, so I look after people with seizures. So many of those will have epilepsy. Epilepsy is a very serious brain disease. But let's say at different times, a quarter, a third of those would have seizures that are purely psychosomatically driven.

1:02:34And I would consider epilepsy is a life-threatening disease. it's very very serious but in many ways I would consider my patients with psychosomatic disorders to be sicker because it's less life-threatening however the symptoms are often worse so a person with epilepsy might have a seizure once a year once a week the person with psychosomatic seizure has 10 a day a person with epilepsy can take a tablet to get better a person with psychosomatic disorder has a real unraveling of of a complex brain mind problem to try and solve to get better Often people with psychosomatic disorders, their seizures are longer, they're more frequent, they're worse and they're harder to treat.

1:03:13I see that every day of my working life. So I believe that these are some of the most difficult disorders to live with. And I think that the narrative that long COVID cannot be psychosomatic comes from people who do not respect the severity of that brain mind problem.

1:03:30Amol Rajan:Just as a final thought, what's your sort of advice for individuals listening to this? And what's the kind of advice that as a society we should take away for individuals who you've provoked to think a little bit about what they do or don't want to know? So I never want to sort of say to someone, don't get that test or don't get that diagnosis. What I want is for people to get an understanding of both the negative, potential negative sides of a diagnosis and the positive sides so that they can enter into a conversation with their doctor that is knowledgeable on both sides. So it's not really about not being diagnosed.

1:04:06It's about understanding those downsides so that you can be prepared for them and make an informed choice about them. But more than anything, it's hard for an individual to solve this. I think the health service science doctors need to solve it, really.

1:04:20Amol Rajan:And at a social level, as a people, as a country, what do you want us to do differently? I want us to help people without labelling them. You know, we talk about suicidal people and, you know, we believe that we can help them by giving them a particular label. Well, why can't we recognize suffering and help suffering without having to give a brain disorder label to justify it? I don't understand why society can't figure that out. Well, maybe we'll get a little bit closer to it after listening to this podcast. Susanna Sullivan, Dr. Susanna Sullivan, it's a real pleasure and a privilege talking to you.

1:04:50Amol Rajan:Thank you so much. And thanks for sticking around to answer our listening questions as well. Thank you very much.

1:05:02Amol Rajan:What a very striking thing about Suzanne is that she's a doctor. She's very, very measured. She has a compassionate tone. And if you read her book or if you listen to her on this podcast or indeed other podcasts, I think you could say that what she's trying to do is not cause controversy, not fix political problems, but make patients, who she has spent many, many decades working with and trying to make better, just trying to make them think harder about some of their choices. And I feel genuinely, and it's the great privilege of what I do, that I learn an awful lot from that podcast and that conversation, particularly, for instance, the fact that when you think about something like prostate cancer screening, something I've thought about an awful lot, thought about it a lot after my friend and colleague, George Allagia, died of bowel cancer, saying that we all need to be screened earlier.

1:05:45Amol Rajan:I didn't know that lots and lots of people are treated for cancer when in fact they don't have it. And what she's really just asking us to do, I think, is to be conscious that a diagnosis, which is an appealing thing, a satisfying thing, a cathartic moment, it seems to offer clarity and certainty and a way forward. A diagnosis is a tradeoff. And at different times and different stages in your life, that knowledge or information that a diagnosis can give, A, that knowledge and information can be wrong. and B, it comes with trade-offs for how you live your life that we should just think a little bit more carefully about.

1:06:20Amol Rajan:It's worth saying there are lots and lots of controversial subjects in there, including about neurodiversity, and I hope you feel that I pushed back properly and fairly on all of that stuff and represented the views of those of you who got in touch with me to say that you had some qualms with Suzanne's thinking. She actually engages really meaningfully with all of those criticisms in our bonus Q &A episode. It's called Your Radical Questions, and it'll be out on Monday. that is it for this episode to make sure you don't miss future conversations and indeed to make sure you don't miss our fantastic monday episodes which are really doing well lots and lots of you sending in questions we're getting some great answers from our very very smart radical guests just search for radical with amol rajan on bbc sounds hit subscribe and make sure you've got your push notifications turned on right we'll be back at the same time with another cracking episode of Radical next week.

1:07:13Amol Rajan:But for now, thank you for your time and goodbye.

1:07:24Amol Rajan:This is Mike Bolo of Lexicon Valley. And I'm Bob Garfield. Are you one of those people who sometimes uses words? Do you communicate or acquire information with, you know, language? Hey, us too. So join us on Lexicon Valley to chew over the history, culture, and many mysteries of English. Plus some life cracks. Find us on one of those apps where people listen to podcasts. Every day the world gets a little weirder and a lot more awesome. Cool Stuff Daily takes a look at everything from mining in space to the latest in the fight against cancer to how AI is basically changing everything. It's all the cool stuff you didn't know you needed to know.

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