Exercise compulsion with an eating disorder — what can we learn from others?

SEES Guidelines – the only evidence-based thing out there currently?

Clinicians and researchers produced guidelines for Safe Exercise at Every Stage (SEES). Currently it's for adults and athletes. I believe they're working on guidelines for younger people too.

They argue that you get better recovery when you include attention to exercise, rather than just remove exercise.

The American Psychiatric Association Practice Guideline

The APA's Practice Guideline (2023) summarises the situation well:

"An individual assessment of motivations, benefits, and risks of exercise should be done for each patient as part of treatment planning and be reassessed as renourishment proceeds.

Treatment planning should also consider whether compulsive or driven exercise was a part of the patient’s eating disorder–related behaviors. […]

Once a safe weight is achieved, the focus of an exercise program should be on gaining physical fitness as opposed to expending calories. The focus on fitness should be balanced with restoring patients’ positive relationship with their bodies—helping them take back control and get pleasure from physical activities rather than feeling compelled to engage in exercise.

Consequently, an exercise program should be developmentally appropriate and enjoyable and have endpoints that are not determined by time spent expending calories or by effects on weight and body shape.

Weight training to promote bone health and team sports such as soccer, basketball, volleyball, or tennis are preferable to solitary activities. For competitive athletes, decisions about an individual’s return to full participation in sports will require balancing health-related factors, risks of participation in the designated sport, and other factors that may influence decision-making about participation."

The American Psychiatric Association (APA) Practice Guideline 2023, page 36

AED guidebook for nutrition treatment of eating disorders

See pages 48 to 50 of the Academy for Eating Disorders (AED) guidebook for nutrition (2020) for advice based on the latest research.

In summary: have a plan, don't allow anything but limited daily tasks for those in medical danger, and for others, go gradually.

A comprehensive and practical guide

NEDA's  'Coach and Trainer toolkit'. Although it's aimed at school and team coaches, it's useful reading for anyone, with good principles of both harmful and positive practices, and good case studies too.

Project RED-S has resources for athletes, for their supporters, and for specialists: articles, videos etc. Sections for the UK, and for the US.

The International Olympic Committee (IOC) produced a risk assesment tool, using red, amber, green traffic lights: Relative Energy Deficiency in Sport (RED-S) Clinical Assessment Tool (CAT) It includes a 'treatment contract' and a 'return to play' model, but I would warn that there are surely many more considerations, in returning to the sport, than what's in there. There's also a section on eating disorders in Mental health in elite athletes: International Olympic Committe concensus statement

Joyful movement: an ANAD webinar

This is a good YouTube from ANAD (National Association of Anorexia Nervosa and Associated Disorders). Amanda Schlitzer Tierney, MS, CSCS, CEDS speaks about the contrast between a balanced and joyful relationship to movement versus one driven by diet-culture.

Youth sports: another ANAD webinar

Another good YouTube from ANAD: 'Off the Starting Blocks: Eating Disorder Prevention in Youth Sports' with Savannah Fernandez, PsyD.

Lots of good concepts on prevention, what is a good attitude, what is 'well balanced',  and I like how she suggests having conversations with 'athletes' – meaning any young person who's a lot into their sport – for instance on their concerns when they have gained weight or when they are less performing.

Most learning starts at around 35 minutes but the whole thing is good. Bear in mind the focus is not on a family-based approach (FBT) and is for any age.

Fit or over-exercising?

If you'd describe your child as an athlete, or involved in competitive sports, be aware that they may be pushed to high levels of exertion even though they are malnourished. Their body is in real danger. Not every coach understands that, for example, a low heart rate may be a sign of malnutrition, not a fitness. And loss of periods in females is not normal.

The keyword for research in this field is Relative Energy Deficiency in Sport (RED-S). It replaces the defunct name 'Female athlete triad' (defunct because the problem exists in males too). It can happen with or without weight loss. Lauren Muhlheim describes how this relates to eating disorders here. The AED guidebook for nutrition treatment of eating disorders (2020), a reputable source of guidance, suggests that treatment is like that for restrictive eating disorders and is focused on increased food intake and reduction or cessation of exercise.

Good discussion here of a pretty ordinary exercise compulsion and a parent's fear of stopping the soccer:

And lots more of varied parent experiences on https://www.aroundthedinnertable.org/post/resume-athletics-11768848

And lots more of varied parent experiences on https://www.aroundthedinnertable.org/post/resume-athletics-11768848

Can recovery co-exist with ballet? A mum expains how leaving top ballet school was necessary as well as positive on https://www.feast-ed.org/forum/?p=/post/can-recovery-coexist-with-ballet-12661110?pid=1340508682

Shirly Bachman: How her son kept relapsing while he continued his competitive diving. Ending the diving was hard, but effective: https://themighty.com/2018/02/no-sports-eating-disorder-recovery-parent/  

Contradicting the idea that people should move away from their old sport, the first few posts on https://www.feast-ed.org/forum/?p=post%2Fsuccess-stories-for-returning-athletes-10439866 describe positive experiences.

Perhaps useful to you: KLP on her son's massive exercise compulsion, the use of Olanzapine to reduce his level of anxiety, and the need for NG tube feeding

Eloise Dulu, triathlete, tells her story of anorexia (I'm told she produces good inspirational instagrams): https://eloisedulu.wordpress.com/2015/09/29/from-black-to-gold-my-journey-from-the-dark-side-of-anorexia-to-claiming-the-podium/

Mary Cain's excellent short YouTube I Was the Fastest Girl in America, Until I Joined Nike is a hard-hitting account of the physical and mental deterioration she experienced as her running coach required her to become thinner and thinner.

And from Mina Leslie-Wujastyk, competitive climber, 'Relative Energy Deficiency in Sport – A Cautionary Tale'. She describes how she got caught up in Relative Energy Deficiency in Sport (RED-S). Careful (trigger warning): she gives figures for weight and BMI.

Dr Julie O'Toole is an eating disorder physician. Two articles are a bit old but possibly still instructive: ‘Tough calls parents have to make’, and ‘Exercise and the severely anorexic patient She warns that exercising could prolong deficiencies in growth, metabolism and cognitive development. She uses lab tests to assess a child’s readiness to resume exercise. (In the UK I don't tend to hear of that being done).

I am concerned that according to the CBT-E manual (Cognitive Behavioural Therapy for eating disorders) by Fairburn, even underweight patients are encouraged to engage in ‘healthy exercise’.

'Integration of physical fitness' by Amanda Schlitzer  Tierney (already mentioned above). It's only towards the end that points are made in the context of someone with anorexia, or someone who is underweight.

'Eating Disorders, Exercise, and the Recovery Process' with Dr Beth Hartman McGilley. I thought this was a good adjunct to the Tierney podcast. I was interested in the message that you can move, but you have to choose a new form of movement than the one that was associated with obessionality, that was ritualistic.

'Ed on ED': Athletes and eating disorders with Dr Tyson. A fascinating account of the biology of undernutrition while someone continues to over-exercise. It's very extreme, and hopefully your own child is not at that level. So only listen if you're interested in how someone in malnutrition might still be able to do so much.

I don't really want to recommend anyone until I've collected more feedback from users. But I also know how much you may want a few names to check out for yourself. So here goes (and really do check them out carefully, and come back to me with feedback!)

The eating disorder exercise clinic

I've heard from someone that physiotherapist Daniel Mansaray is experienced in eating disorder treatment settings, and that sessions so far are offering a lot of hope. The website seems to say all the right things. I got in touch with Daniel and he replied, "We work with people aged 14+ as long as we feel we can meet the individual's needs. Yes we work virtually and so we can work with clients all over."

Free your Fitness: a gradual method

Watch this webinar from Maria Sorbara Mora of "Free Your Fitness". She's also on IntegratedEating.com and on FreeUrFitness.com and on Instagram free.your.fitness

She has created a progressive method, called Sit-Stay-Heal, to rehabilitate individuals with chronic, obsessive and compulsive exercise issues.

Yoga

Eating disorder treatment centers often provide yoga. The idea is that it's a gentle form of movement and restores a kind attitude to the body and its sensations. And it can reduce stress before a meal.

Be careful: there are so many forms of yoga! Some are all (covertly) about weight loss. Some are very energetic. Even the slow kind requires strength, and can make you sweaty and hungry afterwards.

Check out the yoga teacher. Do they suffer from an eating disorder? It happens. Is their website full of images showing off their 'perfect' body and their prowess? Not good, in my opinion. I would avoid any yoga teacher who likes pushing bodies into extreme flexibility. It promotes an attitude of harshness and disrespect for the body (and it's probably not good for the body anyway). I would look for yoga that's all about acceptance and kindness both in mind and body.

Gyms and personal trainers

Be aware that gym equipment displays calories supposedly burned (even though this is pitifully inaccurate) and body composition (muscle, fat — again inaccurate) and that there are scales in the changing room — all this may reinforce someone's obsessiveness. It could re-trigger someone who's in recovery.

Personal trainers may have an eating disorder or an exercise disorder. Decades ago I attended an aerobics class where the trainer's lips would go blue. I was gutted to learn later that she'd been hospitalised for anorexia and fractures.

I've also been shocked to discover that some personal trainers deliver detailed diet advice and meal plans. They may or may not have a 'nutrition' qualification, but as far as I'm concerned only registered dietitians can safely give nutrition advice, and even then I would only use one who uses a no-diet, intuitive eating, Health At Every Size approach. Many PTs and gyms use promises of weight loss to bring customers in. They may call it 'changing your body composition': that means more muscle… and sadly, sometimes it also means reducing body fat to a dangerously low level.

There are some great fitness professionals out there, who may be an asset to your child. Sometimes a parent tells me about a personal trainer who has allowed their son or daughter to reign in an exercise compulsion. They may do this by setting a gradual progression of exercises. It's great when this is combined with life-enhacing messages around food and around acceptance of all body shapes.

Where do you find these gems? I don't know. There are no qualifications for this, and how could there be, when there is no science to set a curriculum? You'll have to ask around, and monitor very carefully. Talking of which, this book intrigued me. At first, I thought it was all going to be very eating-disordered, and then I loved the message of inclusivity and acceptance: Stronger: Changing Everything I Knew About Women’s Strength by weightlifter Poorna Bell. Still, I worry about health effects when any sport gets to competitive level.

It's hard to know whether to allow our children — more or less recovered from an eating disorder — to join a gym. I once posed the question on a forum and got a whole lot of answers. Some parents felt that a desire to join a gym was a sure sign of relapse. Some warn that their gym is a highly triggering environment, with incessant ‘fat talk’ among users, and calorie-counters and weight-loss messages everywhere. Some are confident their child can use the gym sensibly, and can just as easily not attend when there's something better to do. Some, like me, think that our youngsters might benefit from the practice while they’re with us — so that could be a positive if your child is self-aware and able to reflect on the effect gym attendance has on them. Finally, some parents observe that the gym is just a social place, full of teenagers ‘standing around gossiping and eyeing up the boys’!

To take care of medical safety, you could ask your physician to look at the tables in Quesnel et al (2023): Medical and physiological complications of exercise for individuals with an eating disorder: A narrative review. The authors have attempted to summarise the medical and physiological complications of an eating disorder (anorexia, bulimia, binge-eating disorder) which might be exacerbated by exercise. They also offer recommendations for incorporating different types or levels of exercise, depending on the medical state. They are clear that these are big gaps in the literature, so their summaries are just initial indications. In other words, handle with care!

For repair to the brain, Mathisen et al (2021): The neurostructural and neurocognitive effects of physical activity: A potential benefit to promote eating disorder recovery point out that exercise is beneficial to various populations, so perhaps it would also help brain recovery in those with an eating disorder (of any type). They note that any exercise must be prescribed, structured and supervised: we want to promote the social and enjoyment side rather than the maladaptive compulsive side. And of course we must keep exercise safe. The paper is a wishlist for research, which again shows how far we are from solid evidence to know when, how much, and what type of exercise might suit each person.