Program: Iron for long-COVID, 'holy grail' flu shots, and prolonged grief disorder

Norman Swan: Hello, and welcome to the Health Report with me, Norman Swan, on Gadigal land.

Tegan Taylor: And me, Tegan Taylor, on Jagera and Turrbal land.

Today, Norman, I want to talk about diets. In general they're not something I'm personally a super-fan of because I think that being restrictive can lead to other problems, but sometimes diets are necessary. So how do you make sure people get the benefits that they need without tipping into disordered eating?

Norman Swan: Yeah, a really important issue. And I'll be talking about grief. We all experience it at some point in time, but it tends to be misdiagnosed and wrongly treated. What works? Well, hang in there and we'll tell you.

Tegan Taylor: Yeah, I'm really curious about that one. We're also going to talk a lot about viruses today, some really exciting news about influenza B and the future of vaccines. But first, Norman, I'm going to go ahead and devote pretty much a whole new chat section to Covid, because why not? First of all, talking about vaccines, the sort of vaccines that are available in Australia, people might remember at the beginning of the pandemic we had three, we had AstraZeneca, Pfizer, which is an mRNA vaccine, and Moderna, which is an mRNA vaccine. AstraZeneca has kind of fallen by the wayside a bit in Australia and it looks like Moderna is not going to continue being available in Australia once the current supplies run out.

Norman Swan: I don't want to criticise, Tegan, but there was Novavax as well.

Tegan Taylor: Oh, Novavax, yes, let's not forget Novavax.

Norman Swan: Certainly not, a very useful vaccine for people who are worried about their heart. They might have had myocarditis in the past and Novavax is a good alternative. And so Moderna has just announced that their contract with the Commonwealth government has not been renewed. So once the existing suppliers and Moderna run out, there'll be no more Moderna, therefore the only mRNA vaccine available will be Pfizer.

Tegan Taylor: Why?

Norman Swan: The answer is I don't know, Moderna says they've been told by the Commonwealth that they've got enough vaccine and they don't need to order more Moderna, maybe there's a price issue. A lot of these negotiations occur in secret, commercial in confidence, you're never quite sure what's going on. Ironically Moderna is building an mRNA facility in Australia, so it's committed to Australia. And I think they're hoping that they will get sales of their vaccine when they're producing it on our land.

Tegan Taylor: So current supplies will sort of run out, and then after that it'll just be Pfizer, which actually leads me to a question that we got from a listener. It's a little bit like Coronacast. Annabelle is asking about when to get her next Covid vaccine because she's going travelling. She's due for her next Covid vaccine in May of this year but she's going overseas in mid September, and she's wondering whether her level of protection will be greater if she has her shot closer to her departure date. When would be best? I really feel like we must have answered this question at least a dozen times over the years on Coronacast. Has it changed?

Norman Swan: Well, we don't know much information about Annabelle, what age she is, whether she's got comorbidities and so on. And just to remind people, we're really moving into an era where we're having annual booster shots for Covid. And the high priority groups for annual booster shots are people who are older, and people who are sick for other reasons, which might make Covid worse, particularly immunodeficiency, and the rules are different for each group.

So let's assume Annabelle is otherwise uncomplicated and maybe younger than 65, and therefore it's really up to her, according to ATAGI, whether or not she has an annual vaccine. In other words, it's recommended but not insisted upon, in a sense, then she could wait. It's really unclear how to advise Annabelle and we don't give personal advice here. But you're probably getting to a reasonable immune response from your vaccine after three or four weeks. So if you have it maybe six weeks out, you'd have pretty good coverage. But if you've got any other reason to have this vaccine—age, comorbidity—you should have it when you're due, at a year, because then you're covered, because you're just as likely to catch Covid in Australia as you are overseas, so why not get covered now.

Tegan Taylor: And of course a complication of Covid can be long Covid for lots of people, and there's been a study that's come out quite recently about whether maybe what might be happening in long Covid is something with your body's iron levels being out of whack. It feels too simple and good to be true.

Norman Swan: It took me a long time to read this paper, so it's far from simple, but it's elegant research done at the University of Cambridge, and, just a little bit of background, the University of Cambridge is a world leader in genetic research, and there was a contribution from the Walter and Eliza Hall Institute in Melbourne. Now, what they were looking at was really a very complex set of metabolic and genetic changes that they hypothesise might be going wrong in people that were developing long Covid. What they found was, having followed them for a year and they looked at these changes, they could predict, to a reasonable extent, who was going to develop long Covid at about two weeks into the disease.

And what they were looking at was a set of related phenomena. If you remember going back to the early days of the pandemic, the Kirby Institute in Sydney did some very interesting immunological work which showed immunological abnormalities in people with long Covid. There's been this theme going through long Covid research. And they hypothesised at the Kirby that there could be treatments available for long Covid based on these immune abnormalities. So this theme continues with this.

And what they found is that there's a level…this is the Cambridge group…there's a few things going on. There's a level of inflammation in the body. In other words, the immune system is still activated in people who develop long Covid. That inflammation, which is really just the immune barrage, the nonspecific immune barrage that goes up with something attacking your body, and it stays up. And the response to that inflammation, which is quite common when you've got chronic inflammation in the body, is that you become anaemic because your bone marrow becomes less efficient at producing red blood cells. But also your white blood cells, your immune system is also put under stress. And there's a lower white blood cell count. And there's also a lower blood count of the cells in your immune system which are there to recognise foreign invaders. So a virus comes in, these dendritic cells catch it and tell the rest of the immune system what's attacking so that you can get a specific response. So there's reduced levels of both these kinds of cells.

And the production of white blood cells is under stress. And the result of that stress is they become iron hungry. We think of iron as important and we've spoken on this before on the Health Report, that iron is important for haemoglobin, and haemoglobin carries the oxygen in your blood. And if you're low in iron, you can become anaemic. But iron is important for all sorts of metabolic processes in the body, not just producing haemoglobin to carry oxygen.

Tegan Taylor: So does that mean…am I oversimplifying by saying that an iron infusion could be part of the solution here?

Norman Swan: Yeah, you're jumping the gun, but that is possible, because what happens is the white blood cells suck up iron. That's one of their findings. They become iron hungry, and they take it from the rest of the body. So the paradox is the body might not be short of iron, but it's in the wrong place, it's inside the white blood cells. So you've got this complex set of changes, which, you're right, one possible solution that they propose is that you can have an iron infusion to put iron in the right place.

Now, they comment there are risks attached to that. You don't want to have too much iron in the body because that can get deposited in your heart and in your joints and elsewhere and also in its own right reduce your immune system or your immune function. But they also think there's a possibility that a monoclonal antibody used already in Covid in the early days, not universally, might, for theoretical reasons, the way things are working metabolically, help this process to normalise as a therapy here. So, unlike most of these research projects where you say, well, maybe there's a treatment, maybe there's not, this comes up with something concrete that people can move forward with in the clinic.

Tegan Taylor: So do you think doctors will start doing this as a matter of course? Do we need to wait for official guidance on this?

Norman Swan: What's needed is somebody to get a clinical trial funded, where you give them an iron infusion, and you give a placebo and you monitor for safety and follow it through because, as I just said, this is not necessarily a safe…iron infusions are safe. In the Australian context, they're given quite frequently, particularly preoperatively. There's a policy to try and minimise blood transfusions after surgery. If you get a good workup from your surgeon before major surgery then they'll check your iron levels, and if they're low, depending on the time left, you can either go on oral iron, or you can go on iron infusions to replace your iron, which means that you're more robustly prepared for blood loss in terms of your bone marrow responding and producing more red blood cells. So iron infusions are relatively safe. But in this situation there are risks that would need to be tested. Similarly with the monoclonal antibody, which would be expensive.

Tegan Taylor: Fascinating. Now, I did say that we were talking a lot about viruses, but I have a bonus health news story for us, Norman, because there's been another study that's come out about the link between prostate cancer, especially people who die of prostate cancer, and whether following a plant-based diet has any bearing on your outcomes.

Norman Swan: Yeah, this study came out during the week. You've just got to be a bit careful with studies like this because they're not population based. These are men who were in urological clinics, not in the general community, diagnosed with prostate cancer, so it's not necessarily a representative sample of men. But yes, showing that the men who are diagnosed with prostate cancer, and it was non metastatic, it hadn't spread in the first place, and followed through, those who were eating more of a plant-based diet did tend to survive better.

Tegan Taylor: What kind of level of an effect are we seeing here?

Norman Swan: I don't think that you can take the risk reduction too seriously from this paper, because it's not representative of the community. But what it does go along with is that there's a few observations about prostate cancer and men who develop prostate cancer and risk. And there is a suggestion, it's controversial, that men on a high saturated fat diet, controlled for all the other behaviours that might go along with that, are at greater risk of prostate cancer. So there is already a sense that a healthy lifestyle reduces men's chances of prostate cancer. And of course, a healthy lifestyle once you've been diagnosed with cancer, almost of any kind, do improve your chances, particularly exercise. So I think that that's what you can say here, is that it adds to the evidence that what you eat can influence your risk of prostate cancer, and perhaps your outcomes once you've got it.

Tegan Taylor: So it turns out that eating vegetables is good for you.

Norman Swan: Radical idea.

Tegan Taylor: Well, I did promise a lot of virus-based news today, Norman, and you've got some really interesting information for us about influenza B, the lesser celebrated of the two bands of influenza in my opinion. 'Celebrated' is probably the wrong word.

Norman Swan: This comes from the Doherty Institute in Melbourne, and they have a laboratory there devoted to T cells. So there's three kinds of immune responses, we've already talked about inflammation, which is nonspecific, it's the barrage which is set up when something's attacking, but it's not specific until the body learns what's attacking, then you can get a specific response. And when you get specific responses to a virus, there's two kinds, there's antibodies, which are really soluble molecules in your blood which attach to the virus and help to kill it. Then what's called the cellular response, T cells, killer T cells in particular, which are the soldiers, physical soldiers, which then attack the virus as well.

Tegan Taylor: I would like to refer people back to our very recent episode of What's That Rash? in which Norman described the immune system using characters from The Godfather. If you're not subscribed to What's That Rash?, I recommend it just for that explanation alone.

Norman Swan: That's right, I probably called the antibodies the consigliere and these are the lads with the guns. The Doherty Institute, again a few days ago, released an important paper looking at a problem which we all know about, which is that our influenza vaccine has to change every year because the flu virus changes every year. Can you find a part of the flu virus that doesn't change every year, which means that maybe an influenza vaccine lasts several years rather than just one, and you don't have to change it all the time. So it's like polio or measles, that sort of vaccine. And they're focused on influenza B.

Tegan Taylor: We hear a lot about influenza A, there's a lot of different strains of it. Influenza B sort of feels like the other one. What do we know about its impact?

Norman Swan: Well, influenza A tends to be the form of a virus which circulates in animals (you'll hear a little bit more of this in a minute) and because it circulates in animals it's the one that's associated with pandemics, and it's the majority of influenza cases. But a significant percentage, anywhere between 25% and even 50% of cases of flu can be influenza B. Influenza B can be serious, particularly in young people, but it's considered less toxic than influenza A, but nonetheless it causes a lot of hospitalisations, it causes some deaths, and it's one of the forms of the virus in the vaccine. So, our annual influenza vaccine always contains influenza B. And what the Doherty Institute has found with influenza B is an unchanged part of the virus that could inform what's called a universal influenza vaccine. The head of the Human T Cell Laboratory at the Doherty Institute is Professor Katherine Kedzierska.

Katherine Kedzierska: Immunity responses to influenza B viruses are largely understudied, and that's because influenza B viruses do all not have prominent animal reservoirs that enable influenza reassortment and emergence of a totally new influenza strain with pandemic potential.

Norman Swan: So, on one side it's good news, it's not a likely source of the next pandemic, but it's still a significant cause of illness and indeed death. But we have a vaccine against influenza B. I mean, the annual vaccine this year is two influenza As and one influenza B. Are you saying that the vaccine doesn't work as well on B as it does on A?

Katherine Kedzierska: The current influenza vaccines primarily rely on antibodies, they target only specific strains of both influenza A and influenza B viruses. However, as influenza viruses continuously change, this necessitates frequent updates due to mutations of the virus. However, we looked at immune cells called killer T cells that recognise predominantly unchanged parts of the virus that remain unchanged. And that's why they form long lasting memory, they can remember the virus. Even if the virus changes, those killer T cells can provide substantial level of protection.

Norman Swan: So this is the holy grail in influenza vaccines which they've failed to achieve in influenza A, which is to avoid changing the vaccine every year, can you find some constant part of the virus that you can attack, like COVID-19, the spike, even though that does change a lot. In influenza A, there's no constancy that they've been able to find. And what you've been able to find is a constant part of the virus that might be able to translate into a vaccine.

Katherine Kedzierska: That's right. So identification of viral fragments that remain unchanged in the virus history bring us a step closer to the universal influenza vaccine. In our work, we focus on virus fragments that trigger strong killer T cell responses, and identification of such conserved parts of the virus is the holy grail of the universal influenza vaccine that will not require annual reformulating and annual vaccination. Many groups around the world are searching for immune responses that are directed towards such unchanged parts of the virus, and we have now contributed to this knowledge.

Norman Swan: As far as I'm aware, there are no T cell vaccines. There are such things called T cell vaccines which stimulate the cells rather than the antibodies for influenza. How big a jump is it to move to the vaccine stage?

Katherine Kedzierska: We've seen with some of the Covid vaccines that they elicit really strong killer T cell responses, which is exciting. And I think as a next step we can design influenza vaccines that can potentially elicit T cells. We discovered nine viral fragments which provoked strong T cell immunity and remained unchanged. Until now only 18 of such viral fragments have been identified, and some of them by my group previously. So that brings us to the total of 27. And we think with those 27 viral fragments, we will have a really good population coverage globally, but that remains to be tested.

Norman Swan: Does this give you any clues that might have been missed in influenza A that you might go looking at influenza A for unchanged parts that have hitherto been ignored?

Katherine Kedzierska: Over the last few years my team has also been working on identification of influenza A fragments that remain conserved, and we are making progress in that field too.

Norman Swan: That sounds great. Well, I look forward to catching up with you when you progress this to the more applied stage.

Katherine Kedzierska: Thank you so much.

Norman Swan: Professor Katherine Kedzierska who is head of the Human T Cell Laboratory at the Doherty Institute. I need to correct something or clarify something that I said in the interview, I said that this year's vaccine has two A and one B, it actually has two A and two B but one of the Bs which we talked about at the time is actually extinct, it was not circulating anymore, so it was really effectively three. That was my 'get out of jail' on my mistake earlier.

Tegan Taylor: From a practical perspective, as someone who mainly receives vaccines and doesn't research them, it's really interesting, but if I'm going to get a shot anyway, does it matter if I get one-and-done or if I just get it every year?

Norman Swan: No, no, this is not about effectiveness of vaccine, this is about one day getting a vaccine which you don't have to change every year. And so you get one and it will last for however long it lasts, but the manufacturers don't have to produce a new one every year and scramble around and wonder if it's going to work every time. So the current vaccine works as well for B as it does for A in the current setup, it's just a question of this holy grail (to use the words that we both used in that interview) of getting to a vaccine that's just like polio, measles, or most of the other vaccines which don't have to change from time to time. And the key thing here is given the Doherty has contributed so dominantly to this research, whether the ultimate vaccine would actually be produced in Australia and we'd benefit from this economically as well as scientifically.

Tegan Taylor: Do we have the facilities for something like that?

Norman Swan: We do. As we talked about earlier, Moderna has got an mRNA facility there, we've got CSL, we are a major vaccine producer. So we've got the capacity to do it.

Tegan Taylor: Let's go.

So, Norman, have you heard of Health at Every Size, that kind of framework?

Norman Swan: Yes, it's been controversial, is my impression of it. One version of it is that you can be in the obese range and healthy with your lifestyle, in other words, that you don't necessarily have to lose weight. I think that bubble has been burst. But the reality is, it's so hard to lose weight, so can you be healthy, no matter what your weight is. So what's my mark out of ten on that one?

Tegan Taylor: I feel like you get eight out of ten, in terms of my understanding of it anyway. It's sort of about behaviours, rather than about your size. So it's kind of a correction to the idea that being thin is only ever a marker of health, and acknowledging that chasing weight loss at any cost can be unhealthy. And that you can reduce your health risk by having healthy habits without weight being part of the equation. So it's sometimes called a weight neutral approach. And for many people it's very freeing, and it's unsurprisingly very popular and appropriate in eating disorder treatment. But the question is whether it is enough on its own for people with specific health conditions. And a new review of the evidence has shown that at least when it comes to measures like cholesterol and blood pressure, it's still useful, but it's not enough on its own. So I've been speaking with Clare Collins who led this work.

Clare Collins: If you actually have a nutrition related medical problem, then you may still need a therapeutic diet, in addition to using a mindful way to improve your relationship with food. So let's say you have high blood pressure. Well, all the clinical guidelines for managing blood pressure will tell you that if you can manipulate the sodium and the potassium content from the foods that you're eating, then we know that your blood pressure will drop. So if that's you and you go—Oh, before I jump into medications or before I have my medications tweaked, I would really like to try and manipulate the foods rich in sodium by eating less of them and eating more of the foods high in potassium, mostly vegetables and fruit—that's a different type of therapeutic nutrition counselling that you would engage in, compared to a HAES approach to work on your relationship with food. So that's why my team and I wanted to update this review, to see if we could clarify when it's appropriate to use a HAES approach and when it's not appropriate and other or strategies might be better.

Tegan Taylor: So, this is an updated review. What had you found previously, and what's changed this time?

Clare Collins: Well, one thing I noticed about the previous review, which was done by other people, was that it actually had indicated in clinical guidelines it was an approach that could be used for managing high blood fats, so that's high cholesterol. So when I dived into the review, I didn't really think it was particularly convincing for that. So we thought since it was published, there's likely other studies. So if we updated the review, we might be able to provide more certainty. And what that confirmed is that it wasn't an effective approach for managing cholesterol or for managing blood pressure or for managing depression. But there was evidence for managing hunger, and there was promising results towards managing other aspects of appetite. It's good for everybody in the sense that it kind of fits with the purpose of HAES—working on food relationships—but it did confirm that when there's nutrition related medical health problems, you need a therapeutic intervention for those medical problems.

Tegan Taylor: Health at Every Size is, like you say, touted as being a non-diet approach to things, it's very much about intuitive eating. How does it play with something when you do have to still be a bit prescriptive around, say, foods high in cholesterol or foods high in sodium?

Clare Collins: I think it could actually work really well because sometimes people find when they're around certain foods, they almost feel like they have an addiction to them. Let's say you do have high blood pressure, and it's those foods that are really high in sodium that you feel are addictive. You need to be doing do some work on managing your relationship with food, but at the same time getting education about which foods it is that are high in sodium. So they can actually work alongside one another. But what it tells us is that if somebody feels they need more work on their food relationship but at the same time they do want to improve their blood pressure or improve their lipids, they actually need an intervention that combines the two of them.

Tegan Taylor: So the aim with the sort of things you're talking about is bringing things like cholesterol and blood pressure into a healthy range, to help people's bodies stay healthier for longer. Is it still a weight neutral approach, like Health at Every Size has always been?

Clare Collins: Health at Every Size is the weight neutral approach, but therapeutic diets often aren't. But why I think this is timely to be talking about this now is because we're seeing a range of new medications coming onto the market that are really putting the spotlight on body weight. But what is positive about that is we're also seeing the spotlight being placed on stigma. And that means that for doctors and anyone else who are in a position where they're measuring people's clinical health is that here's an opportunity for people to be non-stigmatising and recognising that separation between what people might need from a nutrition point of view to improve their medical health, versus what they might need from more of a psychology approach, which is the HAES, to improve their mental health and their well-being.

I think we just have to keep talking about this until we can stamp out stigma, and make sure that people are getting referred to the appropriate practitioners, whether that's a dietitian who's done extra training and specialises in HAES, or whether it's setting up a managed care plan or a chronic disease plan, so that somebody can go and see the dietitian for a clinical intervention to improve their blood pressure or improve their cholesterol. Or now that we have the medications coming onto the market for people with diabetes in particular, they can actually get referred to a dietitian to improve their blood sugars. So I'm making a plea for people to talk to their GP about the best way to improve their nutrition related health and well-being, whether it's from more of a psychology focus for more from a clinical nutrition focus.

Tegan Taylor: So that's Clare Collins, who's Laureate Professor in Nutrition and Dietetics at the University of Newcastle.

Norman Swan: And just to add a little bit there on blood pressure and cholesterol, you've just got to be careful with lifestyle interventions once you've got it. So lifestyle interventions ahead of time can reduce the risk of developing blood pressure and cholesterol. Once you've got it, there are things that you can do in terms of lifestyle. So let's just talk about blood pressure for a moment. Alcohol, reducing alcohol intake, reducing your weight can make a difference to blood pressure, exercise, moderate exercise according to the guidelines, reducing your salt intake, all those can have an influence on your blood pressure. But many people who've got high blood pressure, those interventions make it a bit better, but not better enough and you do need medications, and you shouldn't run away from that.

And for cholesterol, there's two situations with cholesterol, one is it can be very high, which usually is a genetic cause, and that can be lifesaving to discover that, and you need drugs to bring that down. It's going to be too much for lifestyle to make a big difference to your cholesterol levels. But that familial hypercholesterolemia is really important to detect because it's a cause of premature death in really quite young people.

And then for cholesterol drugs, you really want to do what's called your absolute risk score, which your GP can do for you or you can do online, which is that you need to know what your cholesterol levels are, your LDL…well, it's mostly your HDL I think, your weight and so on, and they calculate your risk of a heart attack or stroke in the next five or ten years. And there's a threshold there, and if you're beyond that threshold, you're, again, beyond the ability I think of lifestyle to help you there and you need to go on medications to bring that down.

And the real question is, if it's higher than it should be when you're younger, 20s and 30s, and lifestyle doesn't bring it down and it's not at the familial level, should you go on treatment? And that's a conversation with your doctor. But essentially we only really focus on people who are 50 and over for cholesterol and blood pressure that's just a bit raised. But if you're younger and you've got it, that's a long time to go with your system being battered by the blood pressure and eroded by the cholesterol. But that's a conversation with your GP.

Tegan Taylor: Yeah, talk to your GP if they're prescribing drugs, don't take your medical advice from a podcast or radio show. But I think what I'm hearing from Clare there is multidisciplinary teams, the role of dietetics in being part of that and not just relying on drugs as well, being proactive.

Norman Swan: Sure.

Tegan Taylor: So as we just heard there, there are times where it is necessary to intervene in someone's diet. But different researchers are saying we need to tread carefully because for a proportion of people it can lead to disordered eating, according to some early research. So the case in point here is irritable bowel syndrome. It's where people have digestive system [problems] like pain in the tummy, diarrhoea and constipation and bloating, it's not fun, and understandably people want to treat it.

Norman Swan: One treatment which has got some evidence for it, although it's a bit controversial, is the low FODMAP diet, an Australian developed diet, which is an acronym for fermentable oligosaccharides, disaccharides, monosaccharides and polyols. So you can see why it's called FODMAP, it's easier to say. And those are sugars, carbohydrates, that in some people may not be absorbed properly by the gut. So not everybody with IBS symptoms is helped by FODMAP, but some people are.

Tegan Taylor: And the way that the low FODMAP diet generally works is that people are advised to cut out all of the foods with those things in them, and then gradually reintroduce them to try to figure out which, if any, are a problem. So it involves cutting out big food groups only for a short period of time. I've been speaking to Caroline Tuck, who's a dietitian who specialises in IBS treatment, and her research project is something that was inspired when she noticed a worrying trend in some of her patients.

Caroline Tuck: So we find that diet can be a really effective management strategy to improve those gut symptoms, which is great. But in clinic what we're starting to notice is that patients see the improvements in their symptoms and then they kind of want to stay on diets, perhaps in a more longer-term way than we perhaps would like them to, and they become a little bit reluctant to start reintroducing foods to test their tolerance. So our concern was while we're using some restrictive diets to improve gut symptoms, that perhaps we were creating another problem by perhaps creating some disordered eating because people are a bit worried and a bit nervous to start reintroducing foods back into their diet again.

Tegan Taylor: So you've done a survey of patients, basically using a screening tool that indicates whether someone might be engaging in disordered eating behaviours, and you found that there was a link between people who had been on these restrictive diets, which are sometimes necessary for IBS, and they were at a higher risk than just the general population.

Caroline Tuck: Yes, if we looked at just those with IBS compared to the control population without gut symptoms, we did see a higher scoring of those disordered eating scales, keeping in mind that they are a screening tool, they're not a perfect tool to be using but that's what we have at hand to be able to use.

Tegan Taylor: What was the scale of the difference between the two groups?

Caroline Tuck: So those with IBS, it was 33%, about one-third had disordered eating according to the scales that we used, and in the control group it was about 16%. So, significantly more in that IBS group, for sure.

Tegan Taylor: This is pretty early research and the results are probably imperfect, but there's a signal there, what's your advice to patients based on what you've found?

Caroline Tuck: Definitely to try and get some professional help, certainly not trying any of these restrictive diets on your own. There's lots of information out there, but it can be a bit conflicting. And it can be a bit of a maze out there in terms of finding the right information. So definitely having a conversation with your GP. But if you're able to access and see a dietitian that specialises in the area, to get that real individualised advice. So when we see patients in clinic, we don't give everyone the same diet, we will individualise it and make it suit their needs and take them through that process to rechallenge and actually really pinpoint which foods it is rather than taking lots and lots of foods out and then getting a bit lost in the maze.

Tegan Taylor: And what do you hope clinicians keep in mind?

Caroline Tuck: Patients that have symptoms that are more severe, so more severe gut symptoms, and that stress and anxiety and things are definitely something that clinicians should keep in mind. But I think really it's about increasing the awareness and increasing screening from the get-go so that we are screening patients before we actually implement any dietary strategies from the start.

Tegan Taylor: Dr Caroline Tuck is a senior lecturer in dietetics at the Swinburne University of Technology. And they are looking at digging into this further now, they're actually looking for patients with IBS to be part of this. So if you're interested in taking part we'll put a link on our website.

Norman Swan: And you're listening to Health Report.

There's one psychological reaction that we're all going to experience at some point in our lives and that's grief when we lose a loved one. It's much misunderstood, often misdiagnosed as depression and treated as depression. And you're going to hear about that controversy in a minute. But also in recent years they've developed a diagnosis where grief becomes an actual disorder, and there's controversy over what works. Anyway, a clinical trial has been done into this comparing two forms of psychotherapy. And one of the leaders of this research was Professor Richard Bryant, who's director of the Traumatic Stress Clinic in the School of Psychology at the University of New South Wales.

Richard Bryant: For decades and decades, most psychiatric diagnostic systems have resisted actually ever recognising grief as a psychiatric disorder because, as you say, it's universal. Whenever we lose a loved one, we experience grief. And so the medical systems have been very resistant to pathologizing that.

Norman Swan: But not only that, you have the Kübler-Ross phenomenon, Elisabeth Kübler-Ross who has talked about the stages of grief. There are probably no stages of grief. She accurately describes some of the emotional states that you get into and the thought processes, but they can happen simultaneously in any one day. And some people will tell you, well, I still go through some of that sometimes.

Richard Bryant: Well, that sort of highlights the issue, that we all go through waves of grief. So somebody several years after losing somebody can suddenly have pangs of grief. Is that normal or is that abnormal? And what's happened over the last probably 20 years is we've accrued more and more evidence that tells us that there's a small proportion of people, it's about 7% of bereaved people a year beyond the loss of the loved one will actually still be stuck in that very, very strong emotional pain. Most of us don't actually get over grief, but what prolonged grief disorder refers to are people who become stuck in that phase of grief that we all have acutely but it's like they never move past it.

Norman Swan: And presumably to get the name 'disorder', it's affecting the rest of their life, they're not able to get down to work or as well as they might, or relationships and that sort of thing.

Richard Bryant: That's right. So when ICD-11, which is the World Health Organisation's diagnostic system, put out its latest edition in 2018, we worked on prolonged grief disorder, and we looked at it across the world and we could see that this constellation of symptoms, which is at its very hub a very persistent yearning or longing for the deceased and that's causing me so much emotional pain I just cannot function, it's causing me a lot of distress and I just can't engage in new relationships and I just can't get on with meaningful activities. And this is a rather consistent pattern that we now see across cultures, east and west, across different types of relationships to the deceased when we lost them and different types of death.

Norman Swan: And sometimes it's mislabelled as depression, and antidepressants are prescribed, which are not going to do any good and potentially could do some harm.

Richard Bryant: It is widely identified as depression and antidepressants are very commonly used. And why that's a problem is that trials have been done that do tell us that when you do a head-to-head comparison between a grief treatment and an antidepressant, the medications don't come out very well. So we really needed to identify people with grief as distinct from depression, so clinicians could be directing them to the right treatment.

Norman Swan: And there's this phenomenon of grief counselling, which I've often wondered…before we get to the clinical trial you did which was not grief counselling, it was grief therapy…I've often wondered whether it reinforces the grief.

Richard Bryant: Well, the grief counselling industry is something that goes back decades and decades, back into the days of Kübler-Ross. What we know now from many trials, meta-analyses that have been done, is that it's just not effective.

Norman Swan: Does it make people worse?

Richard Bryant: Well, it can, I don't want to say all bereavement support groups and grief counselling are being toxic, but if somebody is actually having a persistent grief problem, it's not something that we would be recommending. What we do know in the acute phase is that most people will adapt with time, social support, family, et cetera, we need time to adapt.

Norman Swan: This study you did was into two forms of grief psychotherapy, one which is called a behavioural therapy with a focus on grief itself, which you state in the paper many people find difficult to follow. And the other one was mindfulness based, so using mindfulness meditation or at least mindfulness techniques associated with cognitive behavioural therapy. Just describe the two therapies before we talk about the trial.

Richard Bryant: Grief focused cognitive behaviour therapy is the most common one that's used around the world. It's one that's been around for about 20 years now. It's very much focusing on memories of the deceased for a number of sessions with a therapist, and the reason we do that is we know that most people with prolonged grief, they really have not had a chance to talk about it, and they really haven't confronted those memories and those emotions. We don't do it for long in therapy, so we keep it contained, but we know that it is a very effective treatment. We've done trials with and without that reliving, if you like, of the death memory, and when you don't do that it's not as effective.

Norman Swan: I just want to remind listeners that a few weeks ago we covered this with trauma focused cognitive behavioural therapy, which does work as well, which to me sounded a bit like therapy that you would use for a phobia, not to diminish the sense of trauma or grief, but it's that the reaction to the trauma, or in this case the grief, is one where you avoid it or you're frightened of it. And when you confront it and are able to talk it through, you put it in a more realistic context. So it's a bit like a phobia as well, which is with a phobia you don't run away from your fear of a particular situation, you actually run towards it, carefully guided by a therapist, and realise that the fear can be conquered.

Richard Bryant: It's a really good question you're asking there. In fact, the person who developed and did the first trials in this area actually borrowed the intervention from PTSD treatment. And the reason she did that was it was developed in the aftermath of the 9/11 terrorist attacks. Now, that was actually a very traumatic form of grief, and so it made sense for them to use that form of what we call exposure therapy, which, you're right, you would apply that to all sorts of phobias.

What we know now in grief though is the mechanism is different from what we're doing in anxiety or PTSD. What we do in those disorders, we ask the person to focus on the trauma memory, do it repeatedly, do it for a long period of time, and do it session after session after session, because what we want to see is that distress reducing over time, because the person is learning, 'I don't need to fear that thing anymore'.

A different thing is happening in grief. We've done comparisons of PTSD with grief. And what we find is that the distress the person has when they're reliving the death memory doesn't follow the same pattern as PTSD, the distress doesn't necessarily subside and it doesn't need to for the person to get benefit from the treatment. What it's doing is just allowing them to process the emotions a bit, it reduces the avoidance, and that really opens the gate, if you like, for us to do the other important work, which is considering how they're thinking towards the deceased, their thinking about themselves, their future, and then planning for future events and developing a different kind of relationship with the deceased, which is very much what we aim for.

Norman Swan: And the comparative therapy was this mindfulness technique.

Richard Bryant: The mindfulness is not straight Eastern type yoga, it's a form of cognitive behaviour therapy that's been blended with mindfulness over the years. And essentially what it does, it doesn't challenge people's thoughts, but what it does is it's teaching people to tolerate distress. And we took this approach because some people find the cognitive behaviour therapy approach somewhat distressing to think about the memories. Mindfulness has been shown to be effective in treating depression and preventing relapse of depression, because it's teaching people strategies of being still, focusing on their body, on different thoughts and being able to tolerate them. So we wanted to compare those two.

Norman Swan: So you have a trial where you had 100 people with this grief disorder and they were randomised to either the mindfulness technique or the grief focused cognitive behavioural therapy, what did you find?

Richard Bryant: At the end of treatment interestingly there was no difference between the two conditions.

Norman Swan: How many sessions over how long?

Richard Bryant: They see a clinical psychologist for one hour a week for 11 weeks, then they get assessed, and then six months later they were assessed again. After treatment, everybody was doing the same, there was a strong reduction of grief severity in everybody. But interestingly at the six-month follow-up for people in mindfulness, they had a significant relapse, whereas the people who received the cognitive behavioural therapy, they continued to improve. Our thinking is that…there was also data in this study to tell us this, that whereas both are providing symptom relief, really it's the cognitive behavioural therapy treatment that is probably addressing the mechanisms or the causes of why I'm still having prolonged grief. So being able to change how I'm thinking and being able to reduce my avoidance and address the memories and understanding that I don't need to fear that distress so much, that's changing some of the causes of why I'm stuck in my grief. And that allows me then to have longer-term gains. That wasn't enjoyed by people who do the mindfulness.

Norman Swan: And sometimes kind of behavioural therapy require top ups or some people require top offs, you know, one or two sessions maybe a year later. I know that wasn't part of the trial, but is that the case with grief focused cognitive behavioural therapy?

Richard Bryant: Well, that's an interesting point. It's something that we tend not to do in most of our trials, which is a pity because we tend to see relapse.

Norman Swan: So if somebody's listening to this who thinks when they heard your description of grief disorder that that fits with them and it's affecting their life and they need help, are clinical psychologists trained in this grief focus? How does the GP that you go to to get the referral know whether a psychologist is trained in this grief focused cognitive behavioural therapy?

Richard Bryant: The number of clinical psychologists trained in this is a lot less than those who are familiar with PTSD treatment or anxiety treatment, but I would be asking somebody for cognitive behaviour therapy to deal with the grief. If listeners are interested, they can also Google traumaticstressclinic.com where we do run free programs for people across Australia.

Norman Swan: Richard, thank you very much for joining us.

Richard Bryant: My pleasure.

Norman Swan: Professor Richard Bryant, who is in the School of Psychology at the University of New South Wales.

Tegan Taylor: So, Norman, last week I reinstated our mailbag segment that we had, we were doing it a couple of years ago, people send us these incredible emails, sometimes they're incredibly unimpressed with what we've had to say and we need to correct ourselves. Often they just send us these cool stories. And one of our listeners is also a surgeon who has sent in…I'm not going to call it a complaint, but it's definitely…well, I'll let you decide how to interpret this. This is someone who had someone roll up to their surgery asking for a colonoscopy because we had done a story a few weeks ago about changes in bowel habit and the importance of getting things checked out if that's the case, and this this patient said, 'Dr Swan said I need one.' And this surgeon is trying to think about the doctors in the local area, who's this Dr Swan? And then when she probed, the patient said, 'You know, the Scottish one on the radio.'

Norman Swan: So then what happened?

Tegan Taylor: Well, this person had done their homework and started pulling out from a little esky some jars with poos in them, with time-stamped poos in them, explaining to this surgeon the changes in their bowel habits…

Norman Swan: In jars? I specifically said on the show that you should put it in sealable muesli bags.

Tegan Taylor: You said nothing of the sort, you said nothing of the sort. So anyway, this person has obviously done their homework and is very, very keen to follow the instructions given on this show. I know that we are putting this out to help people understand their health, that's the whole point of it, but sometimes I forget that people really are listening and taking what we say very, very seriously.

Norman Swan: Well, look, you take it seriously that your bowel habit has changed and that's when you do need to talk to your GP, perhaps not jump straight to a surgeon. But taking in several jars…and looking at that letter…anyway, I won't say what the jars were used for originally…and taking the poo in is probably not the next best thing. And also, by the way, just on a serious note with change of bowel habit, people sometimes go and get one of those card tests that you have, an annual bowel screening, which tests for blood in your poo. That is not the investigation if you've got symptoms. The investigation is in fact colonoscopy, if it's appropriate once the doctor has taken the history. So don't jump to the screening test if you've got symptoms, you need to jump to a diagnostic test. That's the same with breast cancer and breast lumps. If you've got a breast lump, you don't jump to screening mammography, that's not the test you have done. You've got to go to a breast clinic, referred by your GP who's examined you, and actually have a diagnostic process. It's very different.

Tegan Taylor: So yes, paying attention to what's happening in your poo is good.

Norman Swan: Well, it's close to my heart because it was part of my training when I was a medical student in the northeast of Scotland. We had one gastroenterologist, and in those days you had Florence Nightingale wards, you know, 30 patients in the ward, and your senior doctor was in charge of the ward, and they might have a sub-interest. So they had general medicine, but their sub-interest might be kidneys or the gut. And this particular doctor who ran the ward was a gastroenterologist. And the poor patients on the ward couldn't go to the bathroom to do a poo, they had to do it in a bedpan. And then what we had to do at the end of each ward round was do a ward round of their bedpans. It was called stool gazing, we had to look at their poos. The memory lives on. This particular surgeon who wrote in is lucky that they were in jars, they weren't in jars in those days. I've got lots of stories from medical school, which we might just string out as time goes by.

Tegan Taylor: Yeah, I feel like we should have one a week. Another email that we've received is actually from someone who I spoke to on the Health Report a little while ago, Jeremy, who suspected that he had autism, he's an adult, and wanted to look into getting screened for it and perhaps understand his brain a bit better. And he'd run up against some roadblocks, but he's emailed me this week with a little update to say that he was able to meet with a local GP who's really keen to work with him, and he's feeling really positive about that. So that's a nice little happy update.

Norman Swan: It's great. And unlike the previous story, this is somebody who's using the general practitioner in the way general practitioners should be used, as the person who looks after your whole health holistically. That's what GPs can do in the context of your family and life, and that's what you're looking for in a good GP, and there are many of them around.

Tegan Taylor: And then they can refer you on to the appropriate people as necessary. And so if you would like to write us a letter, it can be funny, it can be happy, it can be a complaint if you want, you can email us, we are HealthReport@abc.net.au.

Norman Swan: But if it arrives in a packet…

Tegan Taylor: We're not opening it.

Norman Swan: That's right.

Tegan Taylor: And if you just can't get enough of chatting with us, you could check out our other podcast which is where we answer your health questions, it's called What's That Rash?.

Norman Swan: Yeah, and so far we haven't had any poo questions, but please feel free to send them in.

Tegan Taylor: This could be the week.

Norman Swan: That's right. Meantime, we'll see you next week.

Tegan Taylor: See you then.