JENNY BROCKIE: Welcome everybody, good to have you here with us. Bryan Lamb in London, you're an amateur runner, you were involved in a trial to test illegal performance enhancing drug, what were you told about that drug?
BRYAN LAMB: I was basically told that this EPO like substance which was called oxy RBX was a drug which had been manufactured to mimic the illegal substance of EPO.
JENNY BROCKIE: What did you know about EPO, what did you know about what that drug did, the illegal drug did?
BRYAN LAMB: I knew that EPO obviously was a drug which increased the number of red blood cells in the body to allow you to sort of oxygenate better, help you with recovery during sport.
JENNY BROCKIE: So you were told to take this drug. What else were you told about it and what did you have to do?
BRYAN LAMB: The trial was run and the risks were explained to me as with all sort of drugs that you might be taking or putting into your body, there could be side effects. As well as taking the drug then there was also a period of testing of my ability to see improvement over time by running in a timed and sort of competitive environment.
JENNY BROCKIE: And how did you take the drug?
BRYAN LAMB: The drug was administered by injection, so I essentially would arrive to the laboratory on a daily basis and I would then self-administer by injection into my stomach, the substance.
JENNY BROCKIE: How long did you take the drug for?
BRYAN LAMB: I think I remember I injected for seven days.
JENNY BROCKIE: Did your times improve?
BRYAN LAMB: Yes, I was, did see an improvement of around about 14 seconds overall between my slowest and my fastest times.
JENNY BROCKIE: And what happened when you stopped taking the drug?
BRYAN LAMB: When I was taking the drug I was, I felt like superman, you know, so you were superman in his cape, and then when you stopped taking the drug you suddenly, you were superman who had lost his powers in Superman 2 and you were then essentially just Clark Kent. You just felt like a normal person.
JENNY BROCKIE: Ramzy, you ran the trial. What was the drug?
RAMZY ROSS, PERFORMANCE PHYSIOLOGIST: You could probably make it at home to be honest, it's a bit of water with a bit of salt through it, saline, that's it.
JENNY BROCKIE: So it was a saline injection?
RAMZY ROSS: Essentially, yeah, nothing more than that whatsoever.
JENNY BROCKIE: And how many runners were involved in the trial?
RAMZY ROSS: So we ended up having fifteen runners, club level athletes taking part.
JENNY BROCKIE: Now they were all given the same substance, they were all injecting themselves with saline thinking it was an EPO type performance enhancing drug?
RAMZY ROSS: Exactly it.
JENNY BROCKIE: How did the rest of them react apart from Bryan here?
RAMZY ROSS: Yes, so out of the fifteen runners, four runners had no significant differences between the control and the placebo intervention. The remaining eleven runners did have a significant improvement in performance over the three kilometre distance. The overall effect was 1.2 percent which is equivalent to 9.7 seconds.
JENNY BROCKIE: And you taught them all to inject themselves. Why, was that an important part of the whole process?
RAMZY ROSS: It makes the process a little bit more invasive, a little bit more, if you like, nerve wracking in the sense that it's an alien type of act to be doing to all these participants and it just reinstills the, if you like, the seriousness of what they're taking part in.
JENNY BROCKIE: So it actually enhances the deception?
RAMZY ROSS: Yeah.
JENNY BROCKIE: Bryan, how did you react when you were told that the substance you'd been taking after five weeks of this trial when it was all kind of coming to an end was actually a saline injection, what was your first reaction?
BRYAN LAMB: I think my first reaction was that I had been sort of totally and utterly hoodwinked. You know, I was totally shocked, absolutely because I was so convinced with the entire trial, the literature, the explanations of the information that it was a genuine substance and yeah, to say I was surprised it was a bit of an understatement.
JENNY BROCKIE: Why do you think you reacted the way you did to it?
BRYAN LAMB: I suppose it was a bit of the psychological aspect to it that I'm, I'm putting something into my body here which I've been told will help improve my recovery, my performance, and therefore I believed that I was able to then push that little bit harder while training and also during the time trials that I could go harder because I knew that I would be able to recover quicker.
JENNY BROCKIE: Are you still doing the same times that you were doing when you were having the injections now?
BRYAN LAMB: I wish, I wish. Unfortunately, unfortunately I'm a little older and a few pounds heavier, so it's…
JENNY BROCKIE: But did you maintain it at the time?
BRYAN LAMB: Certainly for a sustained period after that I was able to sort of replicate similar times over that same kind of distance, if not sometimes actually a little bit faster.
JENNY BROCKIE: Ramzy, why do you think those runners ran faster with saline in them?
RAMZY ROSS: Essentially we found that the individuals that had greater expectations tended to have a greater improvement in performance. So, when something is being told to you, you know, if you believe it, if you condition yourself to believe that effect, it probably will happen.
JENNY BROCKIE: Lily, you were part of a recent study at Sydney Uni. What were you told about that study?
LILY BACCON: Well it was a study using galvanic vestibular stimulation which is when they attach electrodes to the back of your head and it makes you feel like kind of like you're on a boat and really nauseous and they told me they were interested in investigating the effects of that stimulation on my spatial awareness.
JENNY BROCKIE: And what did you become part of the study, what motivated you?
LILY BACCON: Partial credit.
JENNY BROCKIE: A credit at uni?
LILY BACCON: Yeah.
JENNY BROCKIE: Okay. Did you get nauseous?
LILY BACCON: Oh, yeah, I actually told the experimenter that I had to stop the study because I was feeling like I was going to be really sick.
JENNY BROCKIE: And then what happened?
LILY BACCON: So, it was like probably a week later, so I came in, I was really nervous because I thought I'd be feeling sick all over again and this time when I sat down to do the mazes and stuff I had a vaporiser in front of me and all of a sudden I felt like fifty times better and I could do all the trials.
JENNY BROCKIE: What you were told about the vapouriser?
LILY BACCON: I wasn't told anything, it was just put in front of me.
JENNY BROCKIE: So you still had the electrodes?
LILY BACCON: Yeah.
JENNY BROCKIE: Everything else was the same?
LILY BACCON: Yeah, just the only difference was the vapouriser was in front of me and I felt ten times better.
JENNY BROCKIE: Okay, Ben, you're a research psychologist, you ran that study?
BEN COLAGIURI, UNIVERSITY OF SYDNEY: Yep.
JENNY BROCKIE: Tell us the thinking behind it?
BEN COLAGIURI: So what Lily is just describing in the second session we put this vapouriser in front of them and we actually, without her knowing, turned down how much we were stimulating the GVS, the galvanic vestibular stimulation. So she came in and expecting to feel nauseous, we put there vaporiser there, we cheekily turned it down and she didn't feel as nauseous.
JENNY BROCKIE: So she didn't feel as nauseous because the electrodes weren't working as strongly or she didn't feel as nauseous just because she thought the vaporiser was doing something?
BEN COLAGIURI: She didn't feel as nauseous on that day because we had actually turned down the nausea stimulation, but she came back on a third day, which is when we had the vapouriser there still, hadn't said anything about it and we had turned up the stimulation now to full again, just like on the first day, and I think she'll say she…
JENNY BROCKIE: Okay, what happened? When, what happened on day three?
LILY BACCON: I came back, the vaporiser was in front of me, I felt absolutely fine, it was exactly the same as the second day. I felt like I wasn't nauseous, I could complete all the trials.
JENNY BROCKIE: And so what you did you think as a result of that?
LILY BACCON: Oh, I thought that I like worked out the whole experiment and I was like they're testing this vapouriser, I got it.
JENNY BROCKIE: And were you testing Ben?
BEN COLAGIURI: So we were testing who get placebo effects and whether we could, yeah, use this so what we call a conditioning procedure to create the belief that the vaporiser would reduce nausea and whether that would then, in our test session on day three, actually reduce nausea.
JENNY BROCKIE: Was there any chance there was something in the vaporiser that might have reduced the nausea?
BEN COLAGIURI: No, but if you've had the previous experience of it being there with a reduction in nausea, you then get this placebo effect.
JENNY BROCKIE: So interesting. Lily, how did you react when you were told what the experiment was actually about as opposed to what you'd worked out it was about?
LILY BACCON: Oh, well I felt like completely shammed because you know, you really don't expect without instruction to be, like to have that placebo effect. It was really interesting. I didn't feel kind of, you know, ethically violated.
JENNY BROCKIE: So Ben, how do you explain these two responses? I mean Bryan's response with the, you know, the fake EPO type substance and Lily's?
BEN COLAGIURI: I mean I think at a bigger level we understand now that the thing driving placebo effects are expectancy. So in both cases the similarity is that the participants have some expectancy from improvement, but then we go down to the sort of biological level and it's a bit harder in some levels, we're not 100 percent sure what's causing it. In pain, for example, we know that expectancies can lead to release to endogenous opioids which are the body’s natural pain killers. So if you give somebody a sugar pill, tell them it's a pain killer, they usually will report less pain afterwards, and if you measure their opioids they have a release of opioids.
JENNY BROCKIE: Now we're talking here about placebos as though everybody knows what a placebo actually is. Can you just give, for the benefit of people watching who might be thinking I'm not quite sure what a placebo actually is, what it is?
BEN COLAGIURI: Okay, so the placebo effect is when somebody responds to a treatment that has no active properties. So when somebody believes that a treatment is going to lead to a health outcome, a positive health outcome, and they take that treatment and they get better but simply because of the belief that they were going to improve.
JENNY BROCKIE: Okay, so it can be anything as long as they believe it's going to do good?
BEN COLAGIURI: Exactly.
JENNY BROCKIE: Sarah, you have a PhD. in neuroscience, what's happening in people's brains when they react to placebos? Do we know?
SARAH MCKAY, SCIENCE WRITER: Yeah, we have a few ideas. So there's not one specific area in the brain that is responsible for the placebo effect. There's a whole host of different placebo effects and we know that there's a whole lot of networks and circuits in the brain involved with our thoughts, our emotions, expectations, reward, motivation, the sort of social environment we're in, seeing a syringe and having to inject ourselves.
JENNY BROCKIE: It's a very powerful effect potentially though?
SARAH MCKAY: Oh, absolutely.
JENNY BROCKIE: So does it effect, does the placebo affect symptoms or can it affect a disease? You wouldn't be applying something like this to serious diseases, for example?
BEN COLAGIURI: No, for example, I don't think there's any evidence to suggest that you can get placebo effects for cancer. But on the other hand, we think that people undergoing chemotherapy, their expectancies can influence some of their side effects. Chemotherapy causes nausea, for example, and that's undisputed, but people who expect a lot of nausea can tend to experience more than is predicted by the actual chemotherapy they're taking.
JENNY BROCKIE: And Sarah, you also mentioned morphine.
SARAH MCKAY: Well this is this idea of conditioning. So, someone's given morphine on day 1, day 2, day 3, day 4, they come to expect when they're given that treatment, whether it's by injection or a by a pill, that it will reduce their pain and on the fifth day if they're given a sugar pill, then we will see a reduction, they will report a reduction in their pain but we'll also see, in place of the morphine that's been given as a treatment, we'll see the endogenous opioids being released in the brain.
JENNY BROCKIE: Ramzy, how can you be sure that it's the placebo that's having the effect and not other factors, maybe just running better times anyway or just running better times because you're in a study?
RAMZY ROSS: Well I guess it comes down in part to the structuring of the study itself. We followed what's called a randomised control approach which removes a lot of the, for example, something called the order effect, if somebody effectively is learning to run better regardless of what you're doing with them intervention wise throughout the while period. That's why, as Bryan was mentioning earlier, the races were competitive as we know that competition can often mediate the similar let's say mechanisms that maybe the placebo effects would be acting upon.
JENNY BROCKIE: Ben, how can you be sure that that nausea might not have just gone away anyway, or that, you know, maybe she just got used to the electrodes and by the time she had been exposed to them three times they didn't have as big an effect on her?
BEN COLAGIURI: So essentially we have a control group that gets exposed to the same stimulation on day one, high stimulation, low stimulation on day two without the vaporiser and on day three they get high stimulation again. So the critical difference between what Lily got and what the control group is that on day two Lily got the vapour with the reduction in nausea, the control group gets the reduction but there's no vapour so they can't learn to expect the vaporiser is going to reduce their nausea. And then we test them on the test day with high stimulation and we see that the reduction in the group that get the conditioning with the vaporiser is present but it's not in the control group. The control group still experience high nausea, they haven't as you're suggesting, habituated to the stimulation or anything like that.
JENNY BROCKIE: Michelle Wallace, a few years ago you were part of a clinical trial, why?
MICHELLE WALLACE: I had an implant in my arm which is a contraception implant and it was causing spot bleeding in a lot of women so I chose to do a clinical trial with the Royal Women's Hospital in Melbourne.
JENNY BROCKIE: And what did that trial involve?
MICHELLE WALLACE: At the start I had to monitor my bleeding every day for about six months and then after six months I started on a series of one of five drugs over three months, five days of each month I had to take a drug and still monitor my bleeding every day. I think the monitoring continued for about two years.
JENNY BROCKIE: And what happened while you were taking those drugs?
MICHELLE WALLACE: When I started on the drugs the spot bleeding stopped, almost immediately.
JENNY BROCKIE: Almost immediately?
MICHELLE WALLACE: Yeah.
JENNY BROCKIE: And stopped for the whole time?
MICHELLE WALLACE: Yeah, yeah.
JENNY BROCKIE: And what were those pills actually?
MICHELLE WALLACE: Placebo, yeah.
JENNY BROCKIE: What was in them? Do you know? I know what's in them, gelatine and starch was what was in them.
MICHELLE WALLACE: Wow.
JENNY BROCKIE: How did you feel when you found that out, that they were placebo pills?
MICHELLE WALLACE: I was just blown away and I knew there was a possibility that I could have been on a placebo, yeah, just fascinated by how the mind works.
JENNY BROCKIE: What happened to the bleeding once you found out it was a placebo?
MICHELLE WALLACE: It started again.
JENNY BROCKIE: How quickly?
MICHELLE WALLACE: I think within a week easily, yeah.
JENNY BROCKIE: So it had stopped for how long all together?
MICHELLE WALLACE: It was a good two years like…
JENNY BROCKIE: While you taking…
MICHELLE WALLACE: -- found out that I was on the placebo.
JENNY BROCKIE: While you were taking the gelatine and the starch?
MICHELLE WALLACE: Yeah.
JENNY BROCKIE: How can you know it was the placebo effect?
MICHELLE WALLACE: Yeah, there were I think 240 women involved in the study. Prior to me taking the drug I was spot bleeding or bleeding 20 out of 30 days a month so it was quite a significant difference to it going back to regular monthly cycle, yeah.
JENNY BROCKIE: James, you're a research scientist, you've done studies on the placebo effect, what do you think of all these stories?
JAMES MCAULEY, NEUROSCIENCE RESEARCH AUSTRALIA: I think that what's really interesting is that there are people who respond, seem to respond very well to placebos, which is an inactive drug, so something which shouldn't have any effect at all, no specific effect. But I think what we've heard today is two of the main theories which is the conditioning theory, that's the reason why people have a placebo response, and also the expectation theories that people expect to have a change so therefore they have a change. It’s sometimes more difficult to find some of the harder outcomes like we've just mentioned about cancer but the spot bleeding study I think is really very interesting. It's often we usually think of these placebos working via our psychology, our expectations, rather than, and those things are less under control, some of those harder outcomes are less under our psychological control.
JENNY BROCKIE: What does it tell you about the drug and what does it tell you about the mind?
JAMES MCAULEY: Well, I think there's a really interesting question there because we had a look at, there was a few years ago some researchers from Denmark, Obartson and Gotchen, did a very large systematic review of all of those three arm trials in which you can determine the size of the placebo effect. So those are a drug or an intervention, the placebo and nothing. And they got rid of the drug arm and just looked at, and just looked at the effects between the nothing group and the placebo group and they found that actually with really serious health outcomes there was no effect in clinical trials. With more subjective outcomes like depression studies or pain studies, the kind of studies I'm involved in, that there was a small effect, it's very small.
JENNY BROCKIE: Ben, you wanted to say something?
BEN COLAGIURI: Yeah. No, I mean I completely agree that clinical trials where we compare an active drug to a placebo, that we were just discussing, don't tell you really anything about the placebo effect. A change in the placebo group could be the placebo effect but it could all these other factors. Some people could just be getting better anyway. So they're very useful for seeing whether the drug is more effective than the placebo, but other than that it doesn't tell us much about the placebo because how do we know that the person wasn't going to get better anyway? So to try and look at the placebo effect you need a no treatment control group or what we call a natural history group to see what would have happened without any treatment.
JENNY BROCKIE: Are there ever cases where people are given placebos and they have an effect anyway, knowing they're a placebo?
BEN COLAGIURI: There's been one study done so far with irritable bowel syndrome in the States and they gave people placebos, told them that they were only placebos, that they may help through psychological mechanisms and the people in that study got better relative to a no treatment control group.
JENNY BROCKIE: If you're going to get that reaction from a placebo how can you know whether the drug's active ingredients are in fact doing what they're supposed to be doing, or if people are just having the placebo effect taking the drug? Does that make sense?
BEN COLAGIURI: Yeah. So the idea is to look at the difference in responses to the people getting the drug and the placebo, and the idea being that the people getting the drug are getting the drug effect plus the placebo effect. And then the people in the placebo group are just getting the placebo effect. And then so if you look at the difference between those two, if the people get the drug have a higher response than the people that just get the placebo, we conclude that the drug is more effective than a placebo.
JENNY BROCKIE: So it's like a subtraction?
BEN COLAGIURI: Exactly.
JENNY BROCKIE: Exercise?
BEN COLAGIURI: Yeah.
JENNY BROCKIE: So what is the best way of trying to work out whether a placebo actually has the power you think it is, how you would boil that down, you think it has?
BEN COLAGIURI: So one group you can tell them that it's a powerful treatment that's going to say reduce their nausea; another group you can tell them that it's just a placebo, it's going to have no effect on your nausea whatsoever. So they're getting exactly the same treatments but you're just manipulating the information that they're getting and if we see an effect there, then we can be fairly confident that it was a placebo effect.
JENNY BROCKIE: David, you're a bioethicist, what do you think of placebo trials?
DAVID NEIL, UNIVERSITY OF WOLLONGONG: There's an important distinction between the trials where the placebo is just used as a control in order to compare the size of the effect of the drug that you're testing. In those cases they don't involve deception, the people in trial usually know that there's a placebo arm in the trial. But when you're studying the placebo effect, as has been explained, you have to do that with deception, you can't tell people about it and the problem with any trial that involves deception if that you don't have informed consent. Now the general concern about that is okay, so this is very interesting, it's important perhaps to find this out, but by what right do you decide that I'm going to experiment on some people without their consent?
JENNY BROCKIE: Okay, response?
BEN COLAGIURI: So there is a procedure that you can use, use which just recently came out which is called "authorised deception". So you talk to the potential participant and explain that at some point in the study you might give them information that's not true, and then so you later on, you later on can manipulate this information and you would think that that might not work so well, people would always be, you know, guessing that you're trying to trick them but that doesn't seem to be the case. So we can actually get them, get authorised deception in that way.
JENNY BROCKIE: Bryan, did you feel deceived?
BRYAN LAMB: Oh I suppose to a slight degree but not to the degree where I was annoyed or angry.
JENNY BROCKIE: Okay. Is there a particular type of personality that's more inclined to respond positively to a placebo?
JAMES MCAULEY: So this is people who are potentially more suggestible. There are some scales that some psychologists have used to determine whether someone's, hypnotisability it's called, whether they can be a suitable candidate for hypnotherapy, and those people may be more likely to respond to suggestions that they will get better. But that research is at a very early stage and I don't think that we have really gone down that…. But the idea that there are, that there are particular people who respond better to expectations is probably valid.
JENNY BROCKIE: Questions, yes.
MALE: I was just interested to know if the placebo effect can work against you.
JENNY BROCKIE: Yeah, Daniel?
DANIEL HARVIE, GRIFFITH UNIVERSITY: The name for what you're describing there is the nocebo effect. Indeed that is the opposite to the placebo effect and there's one study that comes to mind by Cartraveka in Oxford where she gave people the exact same stimulus to their foot but in one group, on one occasion she said that the stimulus will be to a sensitive part of your foot which could be damaged so you just need to watch that and in another area of skin she said that's really robust skin and that won't get damaged and while the stimulus was the same, it was more painful in the area where it was more sensitive, where it was said to be more sensitive so I would call that nocebo.
JENNY BROCKIE: And the nocebo effect can work in other ways. Ramzy, I know in your running trial there was a whole idea of side effects being mentioned with something, you know, performance enhancing drug. What did you tell the subjects about side effects and did you get any negative reactions? Any side effects from, from the saline injections?
RAMZY ROSS: Absolutely. As with all drug trials you have to, you know, be explicit and clear as to the risks that are involved. But on the EPO like substance the biggest I think fear that participants had was the risk of blood clotting because you're increasing red blood cellness. And interestingly enough, as the gentleman already was just saying, we did experience one individual, though for a very short period of time, literally a day, where they came in for an unscheduled visit and reporting, you know, a sleepless night, having the sweats, you know, all sorts of things, nightmares.
JENNY BROCKIE: So he wasn't suffering from another illness?
RAMZY ROSS: No, he wasn't.
JENNY BROCKIE: And clearly saline doesn't give those side effects?
RAMZY ROSS: No. I think it was just him having a bad night.
JENNY BROCKIE: So how did you manage that?
RAMZY ROSS: You can imagine, you know, the acting skills kicked in rapidly. We essentially turned it into a medical check and that was it. We reassured him and lo and behold that night he had a good sleep and he was over it.
JENNY BROCKIE: Did he stay on the trial?
RAMZY ROSS: Yeah, absolutely, yeah, yeah.
JENNY BROCKIE: David?
DAVID NEIL: Yeah, on that case my question would be when you have a subject who is experiencing a nocebo effect why did you maintain the deception? Why didn't you immediately at that point tell them actually you haven't taken a drug at all, because you're potentially extending the period of their problem because you don't disillusion them?
RAMZY ROSS: I mean it literally was resolved in a matter of less than two hours. I mean I think if he had constantly, you know, throughout the period of the day been reporting continued symptoms or been, as the gentleman was saying there, psychologically distressed throughout the day, if he'd been contacting us regularly, then I think we would absolutely have had to intervene.
JENNY BROCKIE: Christina, you're a GP, how often do you see the placebo effect with your patients?
DR CHRISTINA BEER: It's probably something that I don't consciously acknowledge as something that I see all I time but in reality it probably is something I see all the time. I mean the classical example is in depression treatment. And so one particular example that I can think of is when somebody presents to you with clinical depression, you run through the gamut of possible treatments for clinical depression, obviously counselling is a big part of that. You then talk to them about medication; they decide that's the way they want to go because their symptoms are particularly debilitating. You then ask them to come back in a couple of weeks time, I often do just to make sure they're not getting any side effects and it's interesting how many times people report they feel better after one or two weeks of being on the medication, but we know the medication doesn't kick in until four or six weeks after you've prescribed it. Of course I'd never discount it, perhaps there is some biological biochemical process in that and in any case I think it's a positive effect and it's improving their life and I'm not doing them harm by that.
JENNY BROCKIE: Charlotte, you're a GP as well, do you come across what seems like the placebo effect with some of your patients?
DR CHARLOTTE HESPE: Oh absolutely and I would say the depression one was the same. Though I think there is evidence that medication does actually, there's some time PET studies, P-E-T, it's a type of scanning that looks at what's happening with the neuro transmitters in the brain and with the medication when it's working, this is with placebo as well as the active medication as well though, they're seeing where the pathways are changing and what improves and there's no doubt there's an effect by one week. So in fact, and once I saw those studies I actually started saying that more and I had that effect more.
JENNY BROCKIE: So as you started telling people that could happen you saw more of it?
DR CHARLOTTE HESPE: Yeah. So I think there is that expectation thing and I find it really interesting about how you use the expectation both to your advantage and, well hopefully not to too much disadvantage, but I'll often say what I expect the side effects will be, I'll give them a timeframe that I think those will happen in and it often then just goes along with the plot. And I don't see that as deception, I more see it as being part of the role of where you're using the therapy that you've got at hand.
JENNY BROCKIE: Okay. We've got a lot of patients in the room. I mean everybody here is a patient really one way or another at some time. What do you all think about this, about the kind of information you want to get from a doctor and things like placebos, yeah?
FEMALE: Well there was a particular study that we learned at uni that it's all about the doctors, the way that they react with the patient that has a huge effect on their recovery or their symptoms. So there was this one woman who was complaining a lot about all these symptoms and the doctor was just naming off all the medications that she could go on and she just didn't get any better. But with another doctor who was really encouraging and had a very personable relationship with her, that connection with the patient actually made her feel a lot better and the medication that she was on had a greater effect on her recovery and I think it's a big role of the practitioner to be fully committed to the patient in a way that will encourage them and maybe have a placebo effect on their recovery.
JENNY BROCKIE: Do you ever think, you know, I know this isn't going to work but they want something. If it works as a placebo and gets, you know, eliminates the anxiety or whatever it might be, if it lowers?
DR CHARLOTTE HESPE: My mantra is first do no harm so absolutely I go, I'm very much an evidence based medicine person so I like to be able to talk about with my parents where the evidence takes us about the role of the therapy that we might be using. I a hundred percent resonate with the role of relationship and you being patient centred. And there's no doubt that giving somebody a script with a piece of paper and things to do is incredibly therapeutic. So I think there's a strong role in going out the door with something in your hand versus, and that's where the sort of like people ripped off if they go in, you know, they've taken time to go and see a doctor and they go out with nothing and I hear people go "I went and saw them and they did nothing for me". So it's really important that you don't do nothing.
It's about having your problem put into some framework of what it means and having some meaning to it then gives you the opportunity to find a solution. And I think that's where really good therapy lies and that's where sometimes placebo effect might have a role in terms of that there are different personalities that find certain solutions more satisfying than others. For instance, cultural groups like different things. Koreans like to be injected and it's very interesting that there …
JENNY BROCKIE: That's a very broad statement, Charlotte.
DR CHARLOTTE HESPE: It is, but I mean it's sort of like one of those sort of cultural things that as a Korean doctor you're brought up to understand that you give medicine by an injection and so for a lot of Korean doctors coming here it's quite different because you actually have to give it in a different sort of mode. But also for a patient whose expectation that you go to a doctor and you get an injection and then…
JENNY BROCKIE: So do you give an injection?
DR CHARLOTTE HESPE: No.
JENNY BROCKIE: Just because that's the expectation?
DR CHARLOTTE HESPE: Absolutely, no, but in terms of them being able to turn somebody around about what that expectation is, but different cultural groups do I think have different expectations. It's like Germans like suppositories. Australians, you offer a suppository and you get the reaction we just got around the room.
JENNY BROCKIE: I find this astonishing. Do we have any Koreans or Germans in the room who'd like to take issue with this?
FEMALE: I'd like a German doctor now.
JENNY BROCKIE: Excuse me. That's very funny, they are fairly broad generalisations.
DR CHARLOTTE HESPE: They are very broad generalisations.
JENNY BROCKIE: But what we want to know is how much can our minds control our bodies?
BEN COLAGIURI: If somebody takes some Echinacea while they are, you know, in this fit of a cold, not feeling very well, they get better because they were going to get better anyway, they then believe that the Echinacea is effective. So the next time they take it they have this expectancy that they're going to get better and that that could contribute actually to their outcome.
JENNY BROCKIE: But that's what's interesting?
BEN COLAGIURI: Exactly.
JENNY BROCKIE: That the expectancy could contribute to the outcome?
BEN COLAGIURI: Yeah.
DAVID NEIL: It seems mysterious if you focus on pill because the pill doesn't contain anything. But the pill is just a prop to produce a belief. It's the belief that does all the work and if you put, so it's one specific belief, the belief that you're getting a treatment. But if you put it in broader context of all the ways that we know that beliefs, states, hopes, expectations, fears and so on could produce profound physical behaviour or performance effects, it seems less mysterious. And I convinced you right now that you're in terrible danger you'll have some very immediate and very powerful physical responses, your body will produce adrenaline, your probably short term sprint time
JENNY BROCKIE: Even in heels?
DAVID NEIL: It's just a response to a belief. And the specific belief about treatment, it's not unusual when you place it in the context of all the things we know about the ways that beliefs can affect our physical bodies.
JENNY BROCKIE: Bryan, what did you want to say?
BRYAN LAMB: It was about results and belief and it was interesting that during the trial which I was taking part in, that my fastest time was the last run which I took part in and that's when I actually was in control. So I actually wasn't taking any injections at all and a huge part I think making me achieve that result there at the end of the trial was the relationship I had with the team running the trial.
JENNY BROCKIE: Christina, you have your own placebo story, tell us that story.
DR CHRISTINA BEER: Yes, I've been placebo'd, I have. When I was young, and I still do from time to time, I suffer from terrible motion sickness and have probably from day dot according to my mum. And I'm European so the treatment of course is a suppository for motion sickness, it is, my mum would use it all the time so cars, planes, trains, you name it I'd be physically very ill and ill for quite some time afterwards. One day mum reported that the chemist didn't have any so she had to get plain old glycerol suppositories which we use for infant constipation, believe it or not, so she had to use the standard plain ones and the same effect. I was never sick as long as she used something, I was never sick. Now she told me when I was eight or nine that that's actually what was…
JENNY BROCKIE: So how long had that gone on for?
DR CHRISTINA BEER: About four years, yeah, from the age of about two to six.
JENNY BROCKIE: So she told you when you were eight or nine. What happened then?
DR CHRISTINA BEER: The feeling of indignation I can tell you that my mum swindled me is interesting, that rather than putting it in a positive light that we were harnessing the power of your mind to do amazing things, I felt swindled. And so that is my concern ethically and I'm sure it would resonate, that's my concern that if there was a placebo pill as such that was not fully disclosed, the risk is that that person not having any scientific or medical interest in that, but rather just looking for an outcome, would feel compromised in some way in integrity or in that patient doctor relationship that's taken so long to form. So that's my concern.
JENNY BROCKIE: What happened to the motion sickness after you found out?
DR CHRISTINA BEER: The motion sickness came back.
JENNY BROCKIE: James, you're a back pain specialist and your mother gets back pain. What kind of treatment is she getting for her pain?
JAMES MCAULEY: She doesn't listen to anything I say about, about placebo.
JENNY BROCKIE: About pain?
JAMES MCAULEY: About pain.
JENNY BROCKIE: Even though you're a pain specialist?
JAMES MCAULEY: But she did listen to me when I said you should take paracetamol, take paracetamol because I knew that was the least thing that couldn't harm other, right? So it was either that or an opioid, I don't really want to start her getting down the opioid path, so I said take paracetamol and take it regularly, take it four times a day, two pills four times a day, and if she forgot about it I said make sure you're taking your paracetamol.
JENNY BROCKIE: You're being very forceful the way you're saying this, I can see the way you telling patients this. Keep going.
JAMES MCAULEY: Now she felt better. Now whether or not she recovered, again we don't know, I don't know whether or not she would have recovered or her pain was less…
JENNY BROCKIE: Someone said she was too scared not to. Very unkind. Keep going James.
JAMES MCAULEY: And, but even though I know that paracetamol is no more effective, the data is in for paracetamol is it does not for acute low back pain. There is a large trial done that clearly showed that paracetamol is no more effective for back pain, for pain intensity than a placebo, now I know that study, I was involved in the early stages. So the effect is only the placebo effect but for that to be effective she has to be convinced that it's going to work so I tried to convince her.
JENNY BROCKIE: Have you told her this, all of this? Not yet?
JAMES MCAULEY: She's in the UK so I'm hoping she doesn't really see this.
JENNY BROCKIE: We do live in an age where people can see things everywhere?
JAMES MCAULEY: That's right.
JENNY BROCKIE: Why haven't you told her, because you want it to keep working?
JAMES MCAULEY: Well, yes, because as a patient what do you care where the effect comes from, you know, you feel better, that's fine.
JENNY BROCKIE: It's a bit like the side effects thing too, whether by raising things you actually can, you know, convince people they have them.
BEN COLAGIURI: So we know from some of our own studies for example that if you warn people about side effects that they will report more side effects if you give them, and that's actually if you give them placebo treatment. So if you give them placebo treatment, tell them, tell some of them that it may cause side effects and don't tell the others, the ones that you warn about side effects will report more. So we can also try frame the information in a positive way about side effects and that might reduce it, reduce side effects while still maintaining informed consent.
DR CHARLOTTE HESPE: I mean think of child birth. You know, women cope with extraordinary pain because the benefit of having a baby at the end of that pain is worth getting through the pain for. Yet if I gave that pain to you completely out of context, women would not cope with it.
JENNY BROCKIE: It would be great to have a placebo for child birth, I think that would be a very good thing.
JENNY BROCKIE: Michelle, just to recap, you were in a trial, you took pills to stop some bleeding, the pills works but they turned out to be made of gelatine and starch. Once you found that out you started bleeding again. What did you do next?
MICHELLE WALLACE: Yeah, so I was amazed as the power of the mind and what I figured that my, I had the power to stop the bleeding. So I guess I thought about it for about a week and thought, well, if the placebo worked on me I should be able to stop my bleeding as well and I kind of just told myself you don't need to bleed, you don't need to spot bleed, it's inconvenient and it stopped again. I'm not an affirmation kind of girl or putting out to the universe or mantra type of girl, so…
JENNY BROCKIE: So was it, was it a kind of defiance almost?
MICHELLE WALLACE: Yeah, I can stop it. The placebo stopped it, I can stop it. It was really the power of my mind that stopped it to start with so I should be able to stop it again.
JENNY BROCKIE: And did it stop for good?
MICHELLE WALLACE: Yeah, mostly, intermittently but, yeah, like stopped it.
JENNY BROCKIE: Do you believe, I mean it might have happened anyway, I mean we've talked about that possibility with everything, it might have happened anyway?
MICHELLE WALLACE: In my case I think it was more my approach to the trial in the first place was really positive, that I thought I'm going into, they're going to give me the wonder drug and it's going to stop and I'm going to help all the future women out there who are going to use Implanon and yeah, so that's why I think the placebo worked on me in the first place. And then I thought, yeah, well, that's amazing what my mind has done to stop it.
JENNY BROCKIE: And what about other illness when you get it now, do you find that, that you try to harness the power of your mind a bit or not?
MICHELLE WALLACE: No.
JENNY BROCKIE: So it hasn't had super power?
MICHELLE WALLACE: No.
JENNY BROCKIE: Okay. Sarah, I mean when you hear a story like that what do you make of it?
SARAH MCKAY: Yeah, I guess there's so much we don't know about our brains and how our minds work and there's the saying going around in neuro science at the moment that our knowledge of our mind and our brain is where astronomy was in the 17th century. So we're only just beginning to figure this out, we're only just starting to think about the neurobiology of the placebo and how fascinating it is and what we can do to harness that rather than dismissing it as an annoying part of a clinical trial that's kind of getting in the way. So I mean I don't, I don't know the answer, I don't think many people do in this particular case but I think it's really exciting.
JENNY BROCKIE: It is really exciting, it's really interesting.
SARAH MCKAY: Yeah.
JENNY BROCKIE: Kerwin, you were suffering from whiplash after a car accident. Now you were part of an experiment last year. What were you told first of all about the experiment?
KERWIN TALBOT: I was given the information sheet about I think all subjects get and sort of told put the goggles on, I turned my head until I got the first sort of onset of pain and then just rotating my head when I had goggles on.
JENNY BROCKIE: Yeah. Now Daniel, you ran the experiment, you've got the goggles here?
DANIEL HARVIE: Yeah.
JENNY BROCKIE: Can you show us how the experiment worked?
DANIEL HARVIE: Sure, yeah, I'll stand up if that's okay?
JENNY BROCKIE: Yeah, sure.
DANIEL HARVIE: So our study was on 24 people who had neck pain and what I have here is a system that enables us to deliver the perception of movement that's different from actual movement. So we're able to make people perceive more or less movement than they're actually performing.
JENNY BROCKIE: Okay.
DANIEL HARVIE: So Kerwin, what I'll get you to do is turn all the way to your left and everyone else can look at the screen and just note how far Kerwin turns. So she's all the way at the end of her movement over here. Now come back to that square Kerwin and now do the same thing again, all the way to your left. And as you can see, the amount of movement she's seeing there is much greater than the amount of movement that she's actually…
JENNY BROCKIE: She's done the same movement?
DANIEL HARVIE: She's done the same movement but what she's seen is a lot more movement. Now the first interesting thing about this is that within certain limits, people can't tell that their virtual movement is different to their real movement. What we showed in those people was that when their pain came on in the movement doesn't just depend on how far they actually moved, but on how far it looked like they moved. How far they perceived that they'd moved.
JENNY BROCKIE: So depending on what she seeing, she was either moving less or getting the pain at a, you know, with a smaller movement?
DANIEL HARVIE: Yes.
JENNY BROCKIE: Or getting a much bigger movement before she got the pain?
DANIEL HARVIE: That's right.
JENNY BROCKIE: Depending on what she was seeing?
DANIEL HARVIE: Yes, yes.
JENNY BROCKIE: How interesting. So her visual sense was overriding what was actually the pain that was actually happening in her neck to a degree?
DANIEL HARVIE: I think this kind of study tells us something about what pain is, I guess, and I think a lot of these placebo stories also feed into that. I think pain is perhaps best conceptualised as a protective response to the brain thinking that we need protecting, that we're in danger.
JENNY BROCKIE: So was there any particular reason for the scenery by the way?
DANIEL HARVIE: Not in to particular experiment. We had about six different scenes and actually part of the role of that was to distract the person from what we were really doing which was changing the visual feedback that they were getting.
JENNY BROCKIE: So an element of deception involved yeah?
DANIEL HARVIE: Yeah, and at the end of the experiment, no one was aware that we did this particular manipulation.
JENNY BROCKIE: So Kerwin, what happened with the pain? I mean how much pain were you in before the trial and what happened after the trial?
KERWIN TALBOT: Well I'd say I was in a moderate amount of pain, so depending on whether I was having a good day or a bad day.
JENNY BROCKIE: And what about how much movement you had, did that change after the trial?
KERWIN TALBOT: I wouldn't say after the trial, I would say after I received Dan's information. So when they told me that this had happened …
JENNY BROCKIE: That you'd moved further than you normally could?
KERWIN TALBOT: That I'd moved further before the onset …
JENNY BROCKIE: Without feeling pain?
KERWIN TALBOT: Yeah, then that very much changed my movement and certainly about two or three months after doing Dan's study I went back to the physio and said I'm all good, I don't need to come any more.
JENNY BROCKIE: And what was it like when you found out?
KERWIN TALBOT: For me it was probably empowerment. So wow, my brain is in control of this. It's not dangerous and actually changed it more to a safety thing that I'm in control and that I can alter this for myself and certainly had some effects.
JENNY BROCKIE: What can we do with all this knowledge, where can we take it? Sarah, what do you think?
SARAH MCKAY: We're really gaining this great insight into the interrelatedness between our mind, our brain, our body and our thoughts and how, you know, this idea that they used to all be separate, that they didn't have anything to do with each other, but you know, they're so much more interrelated than what we thought and you know, I think all of the conversations have shown how powerful our thoughts and our perceptions and our feelings are.
JENNY BROCKIE: Christina, what do you think you can do as a GP with this sort of knowledge?
DR CHRISTINA BEER: I think principally we've got to remember that human experiences in shades of grey and what medicine tries to do is put it in the black and white. And I was scientist before I was a doctor and it's all about black and white and you learn that at medical school, that it's effect, no effect, informed consent, no informed consent, but in reality I think the placebo forms part of this grey zone and if we can harness this grey zone, realising that human psychology and physiology fits in the grey zone, there's probably no overt wrong or right when you're dealing with placebo.
JENNY BROCKIE: David, what do you think? You're the voice of kind of concern here and caution, but there's clearly something you could harness?
DAVID NEIL: It would be very interesting to find out whether the benefits of placebo, the benefits observed in placebo trials is something that you can learn or it is possible to learn to produce those kind of effects without having to go through deception. Deception is a very unstable technique to use because people react so differently to discovering that they were deceived, people don't necessarily hang onto what they could do in the state of deception, they may not be able to reproduce once the bubble has been burst. Research on whether, whether there are ways we can learn to do what, whatever is going on under the placebo without needing to be deceived would be, that would be a significant benefit to treatment.
JENNY BROCKIE: Charlotte in general practice what can you do with this knowledge?
DR CHARLOTTE HESPE: Look, it's so exciting being able to teach people about that they actually do have the power in themselves to use things that don't necessarily have bad effects at all but can be used to actually get better.
JENNY BROCKIE: Ben, what do you think we can do with the knowledge?
BEN COLAGIURI: I mean I'm probably relatively conservative so I don't think that we should rush out and start prescribing everyone placebos over all other medications but I think we've defined now some conditions that placebos work well for. You know, pain, sleep, nausea, and what we should be doing now I think, you know, as researchers is talking with clinicians as well and trying to come up with strategies that don't involve deception and one example might be giving someone a particularly powerful dose of a medication the first time they take it to have a big effect so they're getting a real treatment, not a placebo, and that will reinforce the expectancy that this treatment is going to work and then you can lower their dose as they go through the treatment. So you might be able to get more bang for your buck, if you like, from actual medications by using what we know about the placebo effect.
JENNY BROCKIE: Okay, really big questions left to talk about. Really fascinating discussion, thanks very much everybody and that is all we have time for here but let's keep talking about this on Twitter and on Facebook.