329: How “Health Advice” Can Lead To (Or Perpetuate) Eating Disorders

Chris Sandel: Hey! If you want access to the transcripts, the show notes, and the links talked about as part of this episode, you can go to www.seven-health.com/329.

Hey, everyone. Welcome back to another episode of Real Health Radio. I’m your host, Chris Sandel. I’m a nutritionist and a coach and an eating disorder expert, and I help people to fully recover.

Two things I just want to say before we get on with today’s episode. One, I have a new laptop. This is the first time I’ve upgraded it since about 2015, so I’m hoping that the picture quality and sound quality is better this time round, or at least definitely the picture quality, because it will be better video as part of this. So if you are watching this, I hope you can notice it, and maybe it enhances the quality of the podcast or the experience.

The second one is that I’m currently taking on new clients. If you’re living with an eating disorder and have been for any length of time and you’d like to reach a place of full recovery, then I would love to help. It really doesn’t matter whether this has been going on for a year or many decades; it doesn’t matter whether you feel like full recovery is this thing that’s really out of reach. Everyone can reach a place of full recovery.

If this is something you’re interested in, then please reach out. You can send an email to info@seven-health.com and just put ‘coaching’ in the subject line, and then I can get back to you on that.

So, on with today’s show. What I’m going to go through as part of this one is a piece of research that was done. This is something that was emailed over to me. Emily, thank you for sending this over to me. Emily is someone who is in the Fundamentals group that I run, and she sent me an email just saying, “Hey, I’m not sure if you’re aware of this bit of research.”

What she sent was an email of someone going through the research or going through a little bit of it and talking about it, and what they were sharing as part of it, I was really interested in. So I asked Emily if she had access to the full paper, and she was able to send that over to me.

So what I want to do as part of this episode is just talk about that paper, talk about the findings from it, but also why I think this is important more broadly. And I’ll put this in the show notes so that you can get access to the paper if you want to read the entirety of it. It will be in the show notes, so just go there for that.

00:02:37

Meta-analysis research paper on PCOS + eating disorders

The paper is called “Increased Prevalence of Binge Eating Disorder and Bulimia Nervosa in Women with Polycystic Ovary Syndrome: A Systematic Review and Meta-Analysis.” This appeared in The Journal of Clinical Endocrinology and Metabolism in 2024. What I’m going to do as part of this – I’m just going to go through what was found as part of this; I’m going to share quotes from the article or from the piece of research and then add in my thoughts on particular pieces.

The reason they were doing this was to inform the 2023 International PCOS Guide so that they could have some information to provide as part of that guide. They performed this systematic review and meta-analysis to evaluate the prevalence of disordered eating and eating disorders among people with and without polycystic ovary syndrome. (That’s what PCOS stands for.)

This group had previously published a meta-analysis that showed increased odds of eating disorders and abnormal disordered eating scores in women with PCOS, but with that original one, the total number of participants was pretty small; there was 470 women with PCOS and 390 controls, and it did not include any studies with adolescents. So what they wanted to do with this was a bigger meta-analysis so they could then use these findings to report back and create these guidelines for what should be done with PCOS.

PCOS, as I said, stands for polycystic ovary syndrome, and it is the most common endocrine condition in women. This is something I didn’t know until reading the article. And there’s association between PCOS and many mental health disorders, such as depression and anxiety. There’s been concerns about a link between PCOS and eating disorders going back three decades. These were first raised three decades ago when a small study found increased scores on a disordered eating questionnaire in women with PCOS compared to women with other non-PCOS endocrine pathologies. So this is something they’ve been aware of for obviously a very long time, but there hasn’t been a ton of research done into it, and there definitely hadn’t been a really robust meta-analysis looking at this.

Really, as they say in the article, the association is not surprising, as women with PCOS have many risk factors for disordered eating, including body image concerns and the recommendation of losing weight as part of the PCOS treatment with the accompanying difficulties in achieving this adequate weight loss.

I think this is so common for so many conditions, and this is something that I will come back to at the end of this, because I think this is really an example of what I think can be happening across the board. Really, a focus on weight management, exercise levels, and dietary restriction can contribute to disordered eating and interfere with recovery efforts for those in eating disorders.

As part of the meta-analysis, they first did research on all of the articles to potentially include before whittling them down. They found 1,352 articles, but there was only 20 of them that were included in the end, which led to a total of 28,922 women with PCOS and then 258,619 controls. The reason this got whittled down to such a small amount is that so many of the pieces of research done on PCOS don’t actually screen for eating disorders or disordered eating. So they could only be using things that actually had this as part of the screening tool, and they wanted to include things that were both for adult women but also for adolescents.

As part of this as well, when they were looking at the screening process for the PCOS, they included a number of different options. Anyone who was diagnosed using the National Institute of Health version or the Rotterdam criteria were included, as well as people who had had their diagnosis made from self-report or hospital records. As part of this, there were some that were excluded; studies that included non-standard PCOS definitions, including BMI or luteinizing hormone or follicle stimulating hormone ratios, or did not detail how PCOS was defined, were excluded.

I just want to explain very briefly what I mean when I say the NIH or Rotterdam criteria. I’ll just explain the Rotterdam criteria, because this is the one that is most used now for PCOS. What it requires is the presence of two out of these three features: oligo-ovulation or anovulation, a clinical or biochemical sign of hyperandrogenism, or polycystic ovaries on an ultrasound.

In terms of what this means in layman’s terms, you’re either having a regular or absent periods. There are signs of hyperandrogenism, and this means you can have excessive hair growth, there can be acne, there could be elevated levels of androgens (and androgens are male hormones). So there’s a number of different things that can be looked at that would then meet this criteria. And then polycystic ovaries on an ultrasound, and this could be characterised by presence of 12 or more follicles measuring 2 to 9 millimetres in diameter and/or an enlarged ovarian volume in at least one ovary. I know that is very much getting into the weeds with this, but I just wanted to specify what that actually means.

When they then looked at all these papers that were included, there were some associations that were found, and I want to go through what they then found as part of this.

00:08:52

Results: Association between PCOS + eating disorders

Out of nine of these papers, they found that there was a prevalence of at least one eating disorder in adult women with PCOS compared to controls. In the overall meta-analysis, women with PCOS had higher odds of bulimia nervosa and binge eating disorder but not anorexia nervosa.

I think there are a couple of reasons why we could have a situation where it says it’s happening in this eating disorder but it’s not happening with anorexia nervosa. One – and this is something that came from the paper – was that often with anorexia nervosa (and it’s not always the case, but often), that is an eating disorder that is developing at a younger stage, and this could develop and precede someone getting a diagnosis of PCOS. So someone develops anorexia in their teen years before they’ve received a diagnosis for PCOS. Maybe they were already getting their period but didn’t have a diagnosis; maybe they never got their period. So it then makes it really difficult to differentiate and to know that the reason that this person is getting these handful of symptoms is to do with PCOS. I think that’s one of the reasons.

The other one is because we have a lot of biases when we are diagnosing eating disorders, and a lot of what drives the diagnosis that someone gets is their body weight. For example, you can have anorexia nervosa, binge/purge subtype, and you can have someone who is diagnosed with binge eating disorder, or you can have someone who’s diagnosed with bulimia. With all of those three options, someone can be doing pretty much the exact same thing, and really what differentiates the diagnosis that someone is getting is based on their body size.

Because even when we look at something like binge eating disorder versus bulimia, often, in most people’s minds, it’s like, there’s a difference between those two because there’s going to be purging. Well, purging doesn’t necessarily have to mean vomiting. Purging can be that someone is using exercise as their form of purging. for example, you can have someone who is in a very small underweight body and meets up to our stereotype of what someone with anorexia looks like, and they are having binging and purging as part of that, so they then receive the diagnosis of anorexia, binge/purge subtype.

You then have someone in a ‘normal’ body who is doing that, and they’re more likely to then receive the diagnosis for bulimia. You have someone who is in a ‘larger’ body, and they’re more likely to receive the diagnosis of binge eating disorder. They could be doing basically the exact same things, but just because of their body, they’re going to receive a different diagnosis of which eating disorder they are actually living with.

This is why I think it makes it hard to say, “Well, it doesn’t really happen in anorexia nervosa.” I think it does; it’s just that one of the mechanisms or one of the things that often happens with PCOS – and it doesn’t happen all the time – is it can have an impact on the size of someone’s body. So it can start to cause someone to gain more weight than they otherwise would, so they’re in a larger body. Then this has an impact on the kind of eating disorder that person gets diagnosed with.

So when I read through this, it’s not that I don’t think that someone can have anorexia nervosa; it’s just that we diagnose it in a way that means that person is not going to receive that diagnosis.

00:12:45

Results: Association between PCOS + disordered eating

When the research paper then looked at disordered eating – the first bit that I talked about is with eating disorders, and now there’s a section looking at disordered eating – they said that mean disordered eating scores and odds of disordered eating were higher in women with PCOS compared with controls. They also found that mean night eating questionnaire scores were higher in women with PCOS. Night eating questionnaires, with this, it was with night eating syndrome, which is another form of disordered eating. It’s not officially an eating disorder. There can be questionnaires around this, so what we’re finding is women with PCOS had higher incidence of that occurring.

I would say with this – I talked at the start that so often the advice around this stuff is that you need to be eating less, you need to be exercising more, you need to be losing weight, and what happens when that is the case is it makes it more likely that someone’s going to be having moments of eating more food. And often, that happens later on in the day. Often, people are able to white-knuckle it enough through the day, but then in the evening time, we get into a situation where we’re eating more.

I also think connected to this, we also have some real biases around this. Someone hasn’t eaten very much during the day and then they eat a lot at night and we put them in the category of this is a night eating syndrome or this is a real problem, where we forget you just didn’t eat enough during the day. This is the time that you’re actually making up, or attempting to make up and probably not even getting close to making up. But it can appear like this is a point where we’re eating ‘a lot’ of food, but if we look at what happened across the day, that’s actually not a lot of food.

Five of the studies reported mean disordered eating scores stratified by BMI. What they wanted to do was look at what’s happening from a BMI perspective. Are there differences for someone at a lower BMI versus a higher BMI? What they found was that scores were higher in the PCOS group with both a BMI less than 25 and a BMI above 25. 25 is the cutoff, at least with BMI, of what is considered normal. Below 25 is in the either low weight to ‘normal’, depending on how low it goes, and then above that is considered ‘overweight’, ‘obese’ – again, putting those things in air quotes.

What this found, and what they discovered with this, is that actually, when we break people down into different BMIs, whether it’s a ‘lower’ BMI or a ‘higher’ BMI, it doesn’t actually have an impact. What they said is of the four studies that performed multivariable regression analysis adjusting for BMI, three found that at least one eating disorder diagnosis or disordered eating variable remained higher in the PCOS group after controlling for BMI. Meaning, even when we control for BMI, there is still this higher rate of disordered eating and eating disorders that is going on.

They went on to say: “When evaluating the contribution of BMI to the association between PCOS diagnosis and the risk of disordered eating, we found that women with PCOS had higher mean disordered eating scores than controls in both the normal and higher weight categories, suggesting an influence of PCOS diagnosis on disordered eating independent of BMI.”

What was also added – I thought this was really interesting – what they said was women with PCOS had more weight loss attempts and more frequently report a perception of being overweight, even at normal BMIs, compared to women with PCOS, which could contribute to disordered eating behaviours. I think this part was really interesting in terms of how it impacts someone’s perception.

There’s actually some really good research around this just more generally in terms of someone’s actual weight isn’t necessarily as important in terms of what their behaviours are or whether they’re going to get into dieting, all of that, compared to their perception of their weight. It’s been a number of years since I recorded the podcast with Dr Jeffrey Hunger where we talked all about weight bias and weight stigma, but one of the things we talked about as part of that episode was there was a paper that he’d done connected to this. Someone’s perception is really important. It’s not just what the number on the scale says; it’s their perception of that number.

I think what can make that number perceived in a worse way is so many of the failed dieting attempts or the restriction, all of the things that are unfortunately being encouraged so often as part of the PCOS treatment in terms of making certain lifestyle changes or food changes, etc.

00:17:50

How this applies broadly to different conditions

The final results, if I talk about what was in the abstract part of the study, to just give an overview, it said, “Individuals with PCOS had higher odds of an eating disorder, which persisted in studies where PCOS was diagnosed by either the Rotterdam criteria or other criteria. Odds of bulimia nervosa, binge eating disorder, and disordered eating, but not anorexia nervosa, were increased in PCOS. Mean disordered eating scores were higher in PCOS, including when stratified by normal or higher weight body mass index. Most included studies were of moderate quality with no evidence of publication bias.”

The reason that I think this is important is because, yes, this study very much looked at PCOS, but I think the same is being perpetrated, or the same things are happening, with so many different conditions that people are suffering with. For example, if someone has diabetes, so much of the advice that they’re then receiving is going to be the same kind of thing: “You need to be doing more exercise, you need to be doing more changes to your eating, you need to be having smaller portions, you need to be having less carbohydrates, you need to be doing all of these different things.”

The message that is always sent as part of this – and this is because of the medical establishment and the way that it is – is that losing weight is best. “Losing weight as part of this is going to be helpful for you.” I think that this suggestion connected to weight loss and making these changes and doing these things with exercise makes it more likely that someone’s going to get into a situation where there is more disordered eating or it turning into an eating disorder.

I think that this is true even where there are situations where it’s not about weight loss, although I think it comes up so often. For example, someone with an autoimmune disease. And this might not even come from a doctor; this might be coming from online sources, and people are saying, “This is the autoimmune protocol” or “This is this thing for that thing.” So often, what happens in people’s attempts to improve their health or to eradicate themselves of this disease or to put it into remission or whatever is that there is this really hyper-focus on food and diet and exercise and lifestyle. It often trends in a direction that leads someone to developing disordered eating or an eating disorder.

The difficult thing is that it’s not that I don’t think things can be improved or helped in certain ways connected to things around food or lifestyle. I genuinely think that they can. But one, I think we often blow out of proportion how much this thing can have an impact, and often people can feel like “If I’m not doing this, I’m to blame. I caused this in myself, and if I’m not now taking these steps, this is on me. I’m the one that’s having this failing.” I think that’s just not the right message to be sending to anyone, or for anyone to be internalising that kind of belief.

But two, I think so often a lot of the recommendations are just so myopic in terms of it has to be about food or it has to be about exercise, when there are just a multitude of reasons why things could be a little worse for someone with these symptoms. I think one of the recommendations with this paper was just how individualised things need to be, and being able to then have conversations around this. It could be true, for example, that someone having PCOS and then having higher amounts of stress levels is going to be having an impact. By being able to have a conversation with someone, we can start to figure out what those things are and how that could then be worked on or helped. It needs to be very individualised based on that person.

I think too often, the recommendations are these very broad brushstrokes idea of “Just go out, cut out these foods, do more exercise, lose some weight, and then everything will be fine”, and that just doesn’t translate and doesn’t typically end well.

So that is it for this episode. As I said, I think this is an important study because from my perspective, I think this is representative of so many other conditions. We could swap out the word PCOS and we could bring in some other conditions, and my belief is that if we did the meta-analysis, we would find the same kind of thing.

If you’re thinking about “I need to do recovery in the ‘healthiest’ possible way”, often it’s that kind of thinking that is then keeping you stuck in the eating disorder. I’ve done a whole separate podcast on that as a topic, which I will link to in the show notes, but if you’re living with an eating disorder, the healthiest thing you can do is not have an eating disorder.

Anything that allows you to do that, even if it feels like it’s at odds with what society talks about as being healthy, that is the thing that you need to do. Even if it means eating foods that are ‘unhealthy’. Even if it means taking time off exercise or walking that’s ‘unhealthy’, that is the thing that is going to help you.

I wanted to just say this because there’ll be the vast majority of people listening to this thinking, “Well, I don’t even have PCOS. How is this relevant to me?” This is how it’s relevant to you.

So, that is it for this week’s episode. I will be back next week with another episode. As I said at the top, I’m currently taking on new clients. If you are living with an eating disorder and you want to recover, I would love to help. Send an email to info@seven-health.com and I can then send over the details. Just put ‘coaching’ in the subject line.

Alright, that is it for this week. I will catch you again next week. Until then, take care, and I will see you soon.

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