Assisted dying and palliative care in anorexia

I have been invited to take part in this debate. Anorexia and other mental health conditions are being considered in the context of assisted dying laws. Should someone with anorexia be allowed to ask to have an assisted death?

This is a deeply complex and controversial question that touches on ethical, medical, spiritual and legal considerations. Our answer may depend on how we weigh up the concepts of autonomy (freedom to choose) capacity (being sane) and the nature of anorexia as a severe and enduring mental health problem that creates intense suffering, with no known treatment guaranteed to work.

That doesn’t mean we stop trying.

Many people get better, and I know there is usually a turning point sooner or later. This turning point has been studied so I won’t go into it now. But it can happen with or without therapy. Sometimes people get sick and tired of being sick and tired and then fight their own way out of the starvation phase.

All the same, some people don’t get better despite years of treatment. I have known more than a few people very ill who tell me with conviction that they don’t have anorexia but they have depression. One long-term patient told me that she wanted to pull her skin off her body. I write this not to shock you but to illustrate that anorexia is often complicated by other things and can cause profound suffering.

I can think of reasons for refusing permission to die.

The main one is that anorexia distorts thinking and mental decision making because of neurological changes associated with starvation. The prefrontal cortex in anorexia shrinks to 6.4% of its healthy volume (Maudsley 2024) – a factor that interferes with effective therapy. This is what makes it hard to decide whether someone has the capacity to make such a decision.

Also, the mental component of anorexia includes a drive for self-destruction that complicates whether the person has autonomy in the same way as an adult suffering from cancer or a degenerative disease.

While anorexia is severe and sometimes enduring, recovery or partial recovery is possible even in cases that seem hopeless, given compassionate treatment and support. If we grant access to assisted dying for people with anorexia, we create a slippery slope where the lives of other people with mental problems are undervalued.

Last and not least, healthcare providers have an ethical duty to preserve life, especially in people who lack judgement. We should not abandon people who, at one point in time, have lost all hope of a  meaningful life.

I can think of reasons for allowing it

One is that having gone through years of unsuccessful treatment and who continue to experience unbearable suffering, IF palliative care still doesn’t help, assisted dying might be seen as a compassionate option. This has been allowed in other countries such as in Sweden and in Canada.

Deciding whether someone with anorexia has capacity requires rigorous psychiatric and medical evaluation. I don’t think we have explored who would do it and how it would be done.  We shouldn’t leave one person to carry responsibility for someone’s  life and death.

The bottom line must be NO, or NOT YET

If we extend assisted dying to people with mental health  problems it will add to the stigma people with anorexia already have and there is a real risk of pushing people toward this option rather than putting effort into their recovery.

This question is serious and pertinent. Most experts will argue that our priority is improving access to treatment and ensuring that people with anorexia receive compassionate care, either with a treatment service or, if all fails, with palliative care. People can use the space of palliative care to gather the strength to change. We must acknowledge the interplay between the complexity of anorexia, mental capacity and the potential for recovery. Before deciding.

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The Eating Disorder Emergency 2025

The All-Party Parliamentary report on the eating disorder emergency, did we miss a trick?

The All- Party Parliamentary report on eating disorders has described the current situation with incidence as an eating disorder emergency. This seems to be confirmed by information published in the Times today about the huge rise in the number of young people self-harming, of which part of this is “eating disorders”  (whatever that means). How many people talk about eating disorders when they mean Anorexia?

This report brings to the surface many people with lived experience, to share their frustration and disappointment with the treatment they have received or the lack of it. Access to treatment is like a funnel with a lot of people at the bottom with different kinds of eating disorder needing specialised help, treatment availability at the top being inadequate. And this has to do with the fact that eating disorder treatment for each individual requires multi-agency specialised help; dietary help, family systems therapy, specialised nursing, trained clinical psychologists (not just any old psychologist), medical input and specialised psychiatry for people with an eating disorder plus another mental health condition such as obsessive-compulsive disorder or autism. These people have to work as a team for each patient who is ill enough to need service provision.

Gosh that’s a big ask. There were never enough psychologists available to meet community needs for any mental health problem and there never will be. It’s a huge cost per patient.

Even if service provision were perfect, including dedicated hospital beds (000s), treatment is complicated by denial, secrecy and resistance on the part of patients – at least those with anorexia. I understand this perfectly; this fear of giving up control, of getting fat, of all the benefits that an eating disorder provides such as being your only friend and Guardian Angel. It is this that stops people in the early stages from talking to people. And even if they do talk, the people they talk to are not trained in the language that will help a person reconsider what they’re doing or feeling.

Even if they are in treatment, relapse and resistance are common when our patients bargain with treatment providers to ensure that progress is not really happening. Example, I will eat to get out of hospital so that I can be free to continue with my exercise and diet. It just makes anorexia in particular one of the most difficult mental health problems to treat, and the costliest to the public purse.

It would seem that all the awareness programmes we have done over the past 3 decades has done nothing to stem the increase in eating disorder cases, so why should we think more of the same will make any difference?  The main issues here are prevention, early identification and treatment.

Re prevention; it’s not achieved by going into schools and talking about eating disorders which can actually make things worse. Preventing eating disorders is a huge subject because in some people there is a genetic element. Teaching emotional resilience with a wide emotional vocabulary from a very early age is known to be highly protective. End of story.

As for early identification. It’s good that parents and schools  should be aware of some worrying signs and can signpost children to appropriate and effective help with parents and schools on board. But it is hard to distinguish some normal behaviours in  young people from behaviour that is more worrying. With 4 decades of work in this field, I know that the signs of anorexia are often present well before someone has embarked on a fitness, health or weight-loss programme that precedes the illness. Anorexia, in particular, is like a demon that lurks from birth, waiting for something to trigger it into life. The other problem with early identification is how few people know how to get inside the “I’m alright, leave me alone” that is a feature of anorexia.  Exposing children to eating disorder material as part of PHSE doesn’t help with that.

Treatment; the Parliamentary Report rightly flagged up the lack of appropriate treatment, but I already explained the difficulties. I’ve considered over many years whether throwing more money at treatment services would solve the problem or make a dent in it and – I don’t know. Despite millions of £/ $ thrown into eating disorder research, we have some useful things to do, and better awareness; there is still no known treatment for anorexia that promises success.  But there are good workable treatments for bulimia nervosa and compulsive eating that no one talks about.  

As someone said on BBC today, many people just get sick and tired of being sick and tired.  But many stay imprisoned because it’s the only life they know.  This may mean that “some people are sent home to die”   as stated in the report.  I feel bad that this is an  accusation thrown at well-meaning health professionals. There is, or should be, permission to stop treatment if it is not working, and to substitute it with palliative care and not to paint all treatment providers with the accusation of being uncaring.

Eating Disorders will always raise strong feelings and we need activists and experts contributing to the debate. I just wish that the All-Party Parliamentary Group had come up with concrete proposals for change that are properly examined, such was attempted with the Obesity Foresight report. Where does the problem lie, in the money available, or in the society we have created?

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Fighting back from anorexia

By Lewis Hooper

During the later months of 2018, I became fixated on losing weight. My main focus at the time was excessively checking food package labels, and looking for food which had zero, or very little saturated fats as the main source of food. Then mixed with excessive walking and morning exercise. 

At this time, I was also working a full time 9-5 office job in a contact centre. I would wake up at 5am, to run around the house, and pace up and down like a caged animal in a zoo. I would make sure that I achieved 8500 steps before getting ready for work and then allowing myself to have a 40 calorie yoghurt before leaving the house. After leaving the house, I would then get off of the bus 2 or 3 stops before I needed, to get some extra walking time in before starting work. Friends, family and co-workers started to comment on how ‘thin’ I was looking and trying to give me food to eat, which I would then later throw or give away. This went on for around 5 or 6 months, before going to see my GP after my partner and family kept ‘nagging’ me to go. Which at the time I thought that I was fine, and everyone else had a problem.  

I remember my GP prescribing me ‘High calorie shakes’ in order for me to try and gain weight, but I wouldn’t take them. In-fact finding out now that I was DAYS from being admitted to hospital for having severe anorexia and only weighing 6 stone 4. 

As time went by, and with the help of my local eating disorder clinic ‘STEPS’ I manage to get the help and therapy that I needed. While being on the waiting list for over 14 months for CBT (Cognitive Behavioural Therapy) COVID-19 came and soon after the first lockdown which I found very hard, as I was in the restoration phase through my own hard work and family support, and really needed the medical experience to go forward.  

In August 2020, I had the opportunity to move to South Korea a country that I had never been to before, which led me to feel both excited and nervous but I went with it. December 2020 came, and I had my first CBT appointment! It was really good to start the much-awaited therapy and really take a look at what had led me to lose so much weight, as well as my behaviour and habits around food and exercise.  

While doing therapy, I had found an Entertainment agency in South Korea, which led me to start working in the modelling and acting route. Something that I had thought about many years ago, but never pursued due to the ‘perceived body image’ that was connected with the industry. But this time, I felt confident and went with it. Later actually realizing that the industry doesn’t want ‘anorexic, size zero’ models, but actually those who look ‘healthy’. Having worked in the industry and been connected with some big campaigns and clients, it has led me to re-live some of the ‘anorexic’ thoughts, but also to realize that I need to learn to be happy and confident with who I am, and how I look and accepting that everyone’s body shape, appearance is unique to that individual person. I think that this is especially helpful to men, as its a very taboo subject (men with eating disorders), and I hope that it can inspire and help both men and women who are struggling.

Now I have come to the end of my CBT appointments, and have started to find ways to self-monitor, and continue a successful career.  

Deanne comments on this

Thank you to Lewis for sharing his recovery journey. The desire to eat fat -free food is not rational, the human body needs dietary fat for all kinds of life processes; the immune system and for helping brain cells to work properly. The brain is a fatty organ and needs fat especially Omega 3 fats that you find in salmon and other oily fish. Vegan sources of Omega 3 fats are much less bio-available.

But anorexia is not a rational illness and is not really a desire to be thin, it is more like a desire to disappear and underneath the surface compulsions to starve and count steps are deeper feelings of self loathing and inadequacy. The anorexic purpose of exercise and calorie counting have taken over other purposes for living a healthy life. It gives you meaning – why would you ever want to give it up? Possibly because the person does not think they deserve anything better.

More men than we realise descend into the anorexic life. Lewis needs to work out what was missing that allowed the illness to creep in. This needs to be done alongside CBT which works only partially when the brain is starving.

Anorexia is for many years a whisper away. I hope that Lewis will notice when and if anorexic thinking creeps in, which can happen at times of stress. The illness finds every excuse possible for itself. I wish him well.

OZEMPIC AND EATING DISORDERS

With acknowledgement to Hadley Freeman

It is obvious that Ozempic is a game changer for some people and will not always have the outcomes we dread.
It was obvious anorexics would abuse Ozempic.
It is obvious that people with obesity might not find it works in the long run and that it will be like just another one of those diets that fail and do more harm.
It is obvious that people with eating disorders might flock to it to control their eating & weight because they are desperate.
So should we be against it?

The fact that slim young women are ending up in hospital shouldn’t surprise us. People with eating disorders have always turned to dangerous methods to lose weight. If not Ozempic or Wegovy, then drugs, laxatives, amphetamines and worse. And dangerous drugs have always been available online.

I am like the woman in The Exorcist, swivelling her head to try and work out which population to prioritise. In one direction I see the legions of people in large bodies and sick with it too. Really sick, dying before their time, obesity induced dementia, diabetes, blindness and cancers. They are not going to submit themselves to years of therapy with counsellors who aren’t properly trained who may not know what they are doing, who give them the wrong advice in many cases and who cannot invest in the long haul of struggling to change their relationship with food.

I see the people who are no longer need to submit themselves to the surgeon’s knife who now think that they have a viable alternative for a better life.

I swivel the other way to see the legions of eating disordered people who have found a quick fix that they think will really work to help them manage their damaged willpower / their delusional body image issues.

And to my far right, I see people with anorexia and severe bulimia who will encourage themselves to do the very behaviour that will make them worse, such as skipping meals, eating a nutritionally inadequate diet. And attaining a dangerously low weight like Sharon Osbourne.

Behind me, I see doctors who reach for the prescription pad without giving a second thought and who don’t know how a drug that suppresses appetite could come with risks.

Obesity medication is not new. Every single drug marketed for weight loss since the mid 1990s has come with serious risks. Death, Injury, Rebound weight gain, Risk of developing an eating disorder, What is new here is how successful this one appears to be. So here come the naysayers with all their gloom and doom.

On the doctors’ side, desperate for their patients to damn well PLEASE deal with their obesity, GLP-1 agonists are clearly the Ronseal of weight loss, they do what it says on the metaphorical tin. It is also possible that Ozempic etc may help with other health conditions, such as cardiovascular and kidney diseases. Who could blame the doctors for being excited, and feeling irritation with the side-line sceptics?

On the side of the nay-sayers including well-meaning eating disorder activists; there’s plenty of evidence that eating disorder sufferers, including young men with eating disorders, are buying GLP-1 drugs privately from online pharmacies, which don’t require in-person consultations. Many then suffer organ damage and require hospital admission. Stephen Powis, NHS England’s medical director, said the drugs should not be seen as a “quick fix for people trying to get ‘beach body ready”. Another doctor said’. “They’re really dangerous drugs. It isn’t people who need these drugs that are doing this. This is people with an element of eating disorder and body dysmorphia. At some point we’re going to have a death.”

That people who don’t need semaglutide are injecting it will not surprise anyone who has looked at certain celebrities recently. Sharon Osbourne, now a wraith-like seven stone, is one of the few who have admitted they went too far using Ozempic.

Osbourne stopped when she realised she was too thin. Others won’t, and those people have eating disorders. Yet as I have pointed out, anorexics and bulimics have long been outwitting doctors and abusing weight loss medication, because an eating disorder is not a diet gone wrong; it’s a desire for self-erasure, a slow but effective suicide.

I have heard endless stories about people who take so many laxative prescriptions from so many doctors that they destroyed her own colon and digestive tract. The American singer Karen Carpenter used a fake name to get thyroid medication to speed up her metabolism, and this, alongside her abuse of laxatives and emetics, caused her to go into cardiac arrest at the age of 32. Of all the mental illnesses, anorexia has the highest rate of mortality, often from organ failure.

Doctors will say that the problem lies with unscrupulous private practices. Eating disorder activists will say that the problem lies with using a drug that is no substitute for psychotherapy. That the drug will make things worse. Maybe, all that is true. But it’s also true that unhappy humans have an incredible capacity to take something beneficial and turn it into a weapon of self-destruction. Food, for example, Once it was simply a supplier of energy. Now it has become a source of illness, with too many of us overeating, or undereating, our way to an early death. This doesn’t mean that food in itself is bad; just that human nature is what it is, and it is delusional to not at least acknowledge this.

I cannot in good faith argue against GLP-1 agonists. People tell me that at the least it shuts off the “food noise” that used to stalk them day by day. No one would argue that laxatives and thyroid medication shouldn’t exist. But there is now, especially in the decades since Carpenter’s death, an awareness that caution is needed in prescribing them.

Some people cannot be trusted with these medications and doctors should at the least send people for an in-depth assessment before reaching for the prescription pad. The wealthy and the emotionally damaged will always find a way around such rules, it’s absurd they weren’t in place from the start, given the sensitivity these days about eating disorders. However, controlling what people get access to online extends far beyond weight loss pills.

Paul Simon said these are the days of miracle and wonder; and it is a genuine miracle that so many people who had resigned themselves to lifelong obesity or type 2 diabetes now have hope. In good faith, I cannot deny people that hope and I can say that as I turn my head to look at different populations- Ozempic is both a good thing for some and a bad thing for others, and let the buyer beware.

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SCAMS

There are so many people falling for scams, Im posting advice here for the public in general, courtesy of my bank.

I would like to do my bit to help protect you all, so please read on

DO NOT buy anything advertised on social media, never click on links from Instagram or Facebook that pop up, or use Facebook Marketplace.  It could be a fake site.

DO NOT fall for online special deals, bargains of branded goods, discounts on branded beauty products. Do not fall for a bargain unless it is from a known store like John Lewis and then check it isnt a fake store site.

ALWAYS CHECK that you are on the right site for a store by checking the URL. There are fake stores online, even stores like Harrods or M&S

CHECK the non-delivery policy of any online marketplace like Vinted, EBAY etc, if you don’t get your product they may not return your payment

DO NOT agree to pay for anything you buy online with gift tokens or direct bank transfers.

DO NOT CLICK LINKS in any unexpected message coming into your email / whatsapp or text messages. Not even if it looks official, like taxman, government, etc. NONE

DO NOT LISTEN to cold calls from people offering discounts on phone /broadband deals. Hang up.

DO NOT LISTEN to people telling you that there is a problem with your PC. CUT THEM OFF

IGNORE people messaging that you need to pay to redeliver a package. It’s always a scam

NEVER GIVE A NUMBER CODE to people who call you from your bank or other. This gives them control of your apple pay.

CALL SPOOFING – HALT if you get a call from what looks like your bank and it is the “real number” STOP the call and call your bank from a different phone or your bank app, to find out if they called you or not

CONCERT TICKET FRAUDS – sadly very common.Don’t fall for special offers from a stranger.

ROMANCE FRAUD – if anyone asks you for money, no matter how small for what emergency; say NO NO NO. If you cant say no, speak to an expert or the police.

FRIENDLY CALLS Scammers use humour and being nice to you to hook you in.

Report any scams to ACTION FRAUD or dial 159 if you think you fell for a scam.

or you can report a Scam online directly to the National Cyber Security Centre here – https://www.ncsc.gov.uk/collection/phishing-scams/report-scam-website

Palliative Care for Treatment Resistant Anorexia (TRA): Activism versus Advocacy

The Times  of October 28th 2024 featured the question of palliative care for anorexia. Predictably this has generated a strong response from eating disorder activists, patients and carers who deem this a bad thing.  Let me say that I write this as an eating disorder Advocate, not an Activist. Activism has value but is often based on personal experience;  it represents a kind of passion akin at times to a mania generating strong views that can be biased, emotionally laden  and preclude listening to other points of view that need airing.  Can palliative care have its place among the care options for treatment resistant anorexia?

Palliative care is NOT ‘leave them alone to die’. Palliative care is a specialized medical care that aims to improve the quality of life for people with serious illnesses, including mental illnesses and to help relieve their suffering. It can be provided in many settings, including hospitals, nursing homes, and at home. Anorexia Nervosa is very special by invoking a compulsion to avoid treatment or only accept treatment that is destined to fail. (Quoting Janet Treasure). In early stages, people may deny that they are ill, there are aspects of the illness that give them joy or protect them from suffering even unto death, and this contributes to resistance to “best efforts” to help them.  Low weight and malnutrition make the anorexic brain resistant to psychotherapy.  Even where a person “wants” to recover, the means for that recovery are infinitely worse than staying as they are.  Perhaps they want to recover but stay thin, in which case recovery is never achieved. Death may be preferable to “being fat”.

Anorexia also has profound effects on treatment providers who may fail a very sensitive patient by saying the wrong thing, by not knowing what to do next – because NO ONE has a treatment strategy that is guaranteed to work – and by eroding into the same helplessness that is faced by their patients.  We live by cliches such as “we must not give up on them” and that “we must hold hope for them” – which we absolutely do,  and this effort can feel overwhelming and a very lonely task. 

I argued in an earlier blog against constant trying to treat people with treatment resistant anorexia, instead with each patient’s history in mind, perhaps we should just aim to keep these souls alive by any means possible including periods of enforced refeeding in emergencies, compassionately and for as brief a time as possible since anorexia is a form of psychosis so it could be argued that we are not abusing the patient, rather, we are facing down the illness that keeps them captive. This could be our main outcome until they find their own way (or not) to reach a turning point in their illness. Some do, and it is not always because they found the right therapist. It was just the right moment in time.

Where a person with AN has endured rounds of refeeding, and heinously costly inpatient stays, but little changes, perhaps we need to consider palliative care. This option focuses on improving quality of life for patients when traditional treatment options have failed. Here are several points in favour of this approach:

  1. Holistic Approach: Palliative care addresses the physical, emotional, social, and spiritual needs of patients. This comprehensive care model can help individuals with anorexia find relief from distressing symptoms that may not be effectively managed by standard treatments.
  2. Focus on Comfort: For patients who have not responded to traditional therapies, palliative care emphasizes comfort rather than curative treatment. This can include pain management and support for physical symptoms, promoting a sense of well-being even where the patient is desperately ill.
  3. Supportive Counselling:  Palliative care includes compassion-based conversations, including about death but never as a threat of continuing to starve. Such conversations include how to live one’s best life despite grave disability, and the meaning of life. Such mentoring provides a safe space to address feelings, fears, and motivations.
  4. Family Involvement: Palliative care often includes family members in the care process, ensuring that they receive support and education. This involvement can enhance the overall care and understanding of the patient’s condition.
  5. Quality of Life: By prioritizing quality of life, palliative care aims to enhance the patient’s ability to engage in meaningful activities, find enjoyment in daily life, and improve overall emotional health.
  6. Interdisciplinary Team: Palliative care typically involves a team of health professionals, including doctors, nurses, dietitians, and social workers, who collaboratively develop personalized care plans tailored to the patient’s unique needs.
  7. Reduction of Shame and Stigma: Providing care that acknowledges the chronic nature of some eating disorders can help reduce stigma. This approach fosters an environment where patients feel accepted and understood.
  8.  Externalising the Argument: Offering palliative care could in some cases galvanise recovery efforts. By returning the “wish to change” to the patient, the therapist is  no longer seen to have responsibility for battling the anorexia. This is something that the patient will need to do on their own, and some do.

On November 26th 2024 The Royal Society of Medicine will deliver a daylong seminar on palliative care for mental health problems including eating distress. https://www.rsm.ac.uk/events/palliative-care/2024-25/plt01/

Please attend before you take sides, because palliative care can play a crucial role in the management of treatment resistant anorexia by addressing symptoms, improving quality of life, and offering compassionate support to both patients and their families. It is particularly valuable when conventional treatment options have been exhausted or when patients choose not to submit themselves to further aggressive treatments.

ALL-IN FOR ANOREXIA, USEFUL? OR RISKY?

The “All In” approach for anorexia treatment, which focuses on unrestricted eating, rapid weight restoration, and the removal of all food-related rules, can be beneficial but also presents some challenges. Here are some pros and cons:

Pros:

                1.            Rapid Weight Restoration: This approach can help individuals quickly regain weight, which is critical for restoring physical health and cognitive function.

                2.            Simplicity: It eliminates the need for complicated meal planning or calorie counting, reducing the focus on food-related anxiety.

                3.            Psychological Relief: By allowing all foods without restriction, it can help break the cycle of food fear and encourage a more positive relationship with eating.

                4.            Reduction in Long-Term Obsession: The freedom to eat anything can prevent long-term fixations on “forbidden” foods, supporting long-term recovery.

Cons:

                1.            Overwhelm: For some, the lack of structure and sudden change can be overwhelming and anxiety-inducing, making it harder to comply.

                2.            Medical Risks: Rapid weight gain can come with medical complications, such as refeeding syndrome, especially if not monitored by a healthcare professional.

                3.            Psychological Resistance: Many individuals with anorexia struggle with letting go of control, and an “All In” approach may lead to resistance or rebellion.

                4.            Not Individualized: This approach might not be suitable for everyone, especially those who benefit from a more gradual or structured reintroduction to food.

It works well for some, particularly when done under proper supervision, but it requires careful consideration of each patient’s readiness and health status. There is also no evidence base regarding its effectiveness. I  haven’t encountered anyone who has used the “All In” approach, and I don’t know how it fits within the broader spectrum of treatment methods for anorexia. Its more radical nature can be a good fit for some individuals, but it’s less commonly adopted in comparison to approaches that use more gradual, structured reintroduction to eating, such as Cognitive Behavioural Therapy (CBT) or Family-Based Treatment (FBT).

Bear in mind that many quirky or trendy treatments can be risky without sufficient research backing them up. Sticking to evidence-based approaches ensures that we are providing safe, proven methods to help patients recover.

In the case of anorexia, treatments like CBT, FBT, or even newer advancements like Maudsley-based therapies have strong research support. Our emphasis on what’s been thoroughly tested aligns well with best practices in the field. It’s important to strike a balance between innovation and caution, especially when health is on the line.

I do not know how I would respond to a parent who demands this kind of treatment. As far as my experience goes, I have not yet met a person with anorexia who agrees to eat this way. If they did, they would need to be closely monitored by a medical team due to the potential risks.

I would find it useful to find out what other experts think or to get info from sufferers. So far I don’t know any expert who is for it.

Is it time to call time on anorexia memoirs

A personal and possibly controversial plea

There is a kind of book that some people unkindly call “misery-memoirs”; usually some form of illness or adversity in childhood. Where anorexia is concerned, a lot of books have been written by former or current sufferers. They were once thought useful to inform clinicians what the sufferer experience of anorexia is like.

We have been asked to read a lot of these memoirs, some unpublished, some self-published and some taken on by a publisher who invites us to endorse them. They are much the same. They take the form, as follows;

  • Person is unhappy and in some cases feels wrong in their body.
  • Person loses weight and becomes unable to start eating normally
  • Person begins acting psychotically. One describes sneaking down to the laundry to drink water that had accumulated in a tumble dryer so that their weight will appear higher; one won’t smell food in case he absorbs calories through his nose. One falls off their bike and fractures their hip but escapes from the emergency room to complete their ride in case they gain an ounce of fat. One decides to walk the Camino Trail at a BMI that might kill her, to prove to people that she is fine at the weight she is. One man has written a personal account riddled with obscenities (wash your mouth out, hun) Most run silly distances on empty. To top it off, all speak of a bully, a voice that orders them about and which cannot be challenged.  

There is no doubt that people with anorexia crave to write books about themselves. With some exceptions, few of these books give time to the recovery process; rather they dig deep into descriptions of suffering. I have asked why this is so but have had no answer.  When we are offered yet another anorexi-ography, we read it in case there is something useful, but are mostly disappointed and, also to some extent troubled and  traumatised by the familiar madness revealed in the pages.

This sounds as if I am unsympathetic; I’m not. There is evidence that accounts of anorexia traumatise health professionals.  Anorexia is a terrible psychosis where the therapist is destined to engage in a dance with someone whose illness thwarts change and where I am always at risk of becoming the enemy with one word or gesture out of place.  

There are some superb personal accounts that are valuable for one reason or another.  With one recent exception (Hadley Freeman: Good Girls) there is no need to have any more memoirs to add to experience or add anything useful to an existing bibliography written by people who have fought their way to recovery with focus on that. I can tell always when people claim to be better but they are not. They have just morphed into marathon runners or clean eaters. Reading a great book about recovery (see The Reading Cure by Laura Freeman or Life Without Ed by Jenni Schaefer) I am thus edged from trauma into hope.

Many people with anorexia will recover or partly so with or without psychotherapy. When they reach the spot where the mania softens, this is the time when they start thinking about writing a book about themselves. Is this just another manifestation of the narcissistic core of anorexia?  I would say – no more please – unless you want a memoir for your eyes only. Perhaps start living the life that anorexia stole from you and stop thinking about the past.  We have enough great books (see our website book list) and do not need ANY more.

As someone who once had anorexia (and now do not) I never had the need to write about myself. Perhaps that’s the healthiest place to be.

WHATS WRONG WITH “ATYPICAL ANOREXIA”?



I have heard it proposed that the description “Atypical Anorexia” should be ditched.

Eating disorder classifications have changed over the years. We have had eating disorders classified in many ways, as anorexia, bulimia, ednos, fednec, osfed, orthorexia, and so on. Some psychiatrists even tried to have “obesity” included in eating disorder classification. We do NOT call each variant a “diagnosis” and we should not confuse a “classification” with a diagnosis.

The classifications were invented for a number of reasons. Most importantly they were

A             to legitimise treatment and to make it available to people who beforehand viewed their behaviour as mad or bad.

B             to identify treatment pathways that are appropriate for the behaviour in the room. One would not treat a 14-year-old restricting person the same way as a middle-aged overweight person whose eating was objectively out of control. Well-meaning professionals have devoted their lives (think Janet Treasure or Christopher Fairburn) to developing treatments for different client presentations.

The criteria that led to the classifications were based on frequency of observed behaviour and time.  We have also needed to add thinking typical for each classification. For example, with anorexia nervosa there is a relentless pursuit of low weight that is not experienced by people who lose control of food and who are not underweight.

To qualify for having an “eating disorder” you have to be doing what you are doing fairly consistently and to be doing it often enough that it makes a difference to your life. If a person overeats and then induces vomiting to avoid weight gain once every 6 months, it is hard to know what is wrong,  if at all.

The problem therefore with classifications is that they have never been clear-cut and people do not fit neatly into just one classification as they exist right now. To have anorexia, at the moment, one criterion is to be underweight at a specific level. Anorexia is also a mindset, that is well understood by  people who are trained clinicians. So where do we “fit” someone with an anorexic mindset but who is not underweight or just marginally so?

Where do we fit people who compensate for overeating by purging but not very often?  And where do we fit people who purge without having overeaten beforehand?

The eating disorder classifications as things stand – allow for this variance by saying that there is behaviour that fits the current criteria; and there is behaviour and thinking that almost fits but doesn’t tick all the boxes, one being weight.

Let’s make one thing absolutely clear. We need to sort a client into one or more categories for our own protection and for ethical practice.  I mean, a client can have bulimia and ALSO present with orthorexia or night eating syndrome. When we have sorted this in our own mind we can determine an evidence-based adaptable treatment plan. I had plenty of clients over the past 40 years who behave and think like people with anorexia nervosa. But they are not underweight. The person who first comes to mind was anorexic without doubt but she had a BMI of 30. The reasons for this are complex. Am I going to call them OSFED or FEDNEC cases?  Is that better than ATYPICAL ANOREXIA?

I really don’t care.  I have enough experience to think of my client as I choose. The issue is,  do we NEED to tell our client about what label we have assigned to them?  Whatever “diagnosis” we give them is arguably dehumanising.  Does it really make a difference to think that my client has OSFED or a condition that is similar to anorexia, but not quite?

The OSFED and FEDNEC categories are much too broad for my liking and mean nothing for a treatment plan. If you are going to surrender the labels “atypical anorexia / bulimia,” then first decide what you will replace them with, and whether it makes a difference.

AT NCFED in our interactions with clients, we often (not always) avoid labels. Because they don’t help with engagement or therapy outcomes. We know how to decide if they have an unhelpful, harmful relationship with food and we invite the client to create their own identifier for their experience of eating and body weight. But as clinicians, we have some tick-boxes to rely upon to determine a category, for ethical reasons.

The category “atypical anorexia” has meaning, and specific symptoms. If you can come up with something more useful and why, please let me know. I’m listening.

WHY DO I NEVER FEEL FULL?

I never feel full.

This was the complaint of one delegate on our obesity training. It led me to think about fullness, satisfaction, having enough (satiation) or not caring to eat another bite.

The sensation of fullness is not quite the same as satisfaction. Satiation is a problem for many people living with overweight. Satiation studies have identified people living with obesity who don’t feel as if they ate enough, and they get hungry faster too. Satiation may be identified by slowing up as an eating event proceeds. Some people just don’t seem to slow up. What can be going on?

We note that from birth, some children have an enhanced susceptibility to eating more, when food is present and according to their parent’s opinion, they are always asking for more food.  According to the “Food Responsiveness Theory,” these children are at greater risk of weight gain in childhood and risk being overweight as adults. We suspect that maternal diet before conception and during pregnancy may have something to do with this.

Fullness, satisfaction and satiation result from an interplay between physical and psychological factors. The physical influences are a complex interaction between our genetic footprint,  stomach and gut, appetitive neurochemistry and a  range of neural structures in the brain, the hypothalamus and the opioid or reward centre in the brain.

A satiation response tends to be good in early life, it is barely possible to overfeed a breast-fed baby, they just turn away when they have had enough. Toddlers spit food out when sated unless we can entice them to eat a little more, usually by distracting them. From the age of 7, our innate ability to eat what we “need” becomes impaired, especially if we are in an environment where tasty food is on tap. Our Palaeolithic origins have designed us to eat a little more than we “need” because of the possibility of food shortages. The satiation response is always weaker than the hunger drive.

An eating disorder therapist needs to understand the biology of satiation after eating, that arises from sensory experiences in the Enteric Nervous System (mouth, oesophagus, stomach, liver, gut etc) together with the effect of the chemicals of digestion entering the body and the brain.  During the process of feeding and digestion, several things can go wrong and I mention only a few of these.

The food itself

The food we eat can affect our ability to feel full. Books  have been written about the poor satiation effects of foods containing UPF; so people can eat a lot of food and still feel hungry. I don’t want to repeat the evidence here, but it has become very difficult in our food environment to get food that is UPF-free. Even our cows and farmed fish are fed UPF which is passed to us when we eat their flesh, unless we are buying grass fed organic beef or wild fish.

Note that children eat less and are better nourished when they are given food that looks close to its source ( a fish rather than a fish finger) .

Malnourished

Many people who say that they never feel full have taken in a lot of calories but they are malnourished. Calories alone don’t create fullness, it is the nutrients that make a difference. The foods that contribute to satiation in the short term (fullness) and in the long-term (lower hunger levels)  include good quality protein vitamins, and minerals from having a rainbow diet with plenty of fruit, veggies and Omega 3 fats. And while I am on the subject of fullness and diet, let’s not forget the importance of …

Fibre

It is hard to feel full on a diet lacking in fibre.  You may feel temporarily stuffed on a plate of cornflakes, but compare the sensation after eating a bowl full of porridge oats with a handful of seeds thrown in.  No contest.

Omega 3 Fats

Deficiencies in any nutrient can interfere with satiation but there is a particular place of importance for Omega 3 fats, ideally as fish oil. Omega 3 fats prime neurons throughout the brain to respond to the sensations and chemicals that inform that brain that sufficient nutrients are present.  When the ratio of O6 to O3 fats in our diet is too high in favour of O6, there will be high levels of inflammation affecting the weight control and satiation centres in the hypothalamus. I wonder how many of our clients / eating disorder specialists are aware of this.

The mouth

Mouth-feel of food can affect how satiating it is. Adding a spoon-full of olive oil to a salad makes it feel more satisfying and therefore more “filling”. Rats who get mouthfuls of food that doesn’t reach the stomach (surgical diversion) stop eating after a while, but they start wanting food again sooner.

The stomach

Fullness of the stomach contributes partially to the sensation of “enough”. We have stretch receptors, mostly in the lower pouch of the stomach (fundus) that send fullness signals through the vagal nerve to the brain, switching off the neurochemicals that make us hungry.

Years of overeating or binge eating can downregulate the stretch receptors so that the fullness signals become weak .

People with a gastric band continue to feel hungry because the small pouch receiving food is at the top of the stomach. The fundus where the stretch receptors are located just don’t get the signals that can stop us from feeling contentedly full.

The gut

The gut contains sensory receptors. When stimulated by the passage of food, they produce peptides such as Pyy3-36  that, when activated by the passage of food, suppress appetite neurochemicals in the brain.

Speed of eating and distraction

We have known for decades that eating fast and mindlessly increases the amount of food we want to eat before we register that we have had enough. Slowing down gives our brain and body a chance to register the nutrient delivery of food. Eating fast also weakens the stretch receptors in the stomach and if that isn’t enough, fast eating impairs the production of a “fullness hormone” produced in the small intestine, namely CCK.  . Want to feel full? Slow your eating doooooown.

Distraction also plays a part in stopping people from registering their satiation.  The Health psychologist Jane Wardle showed us that people who eat with food on their knees while watching TV managed to polish off 3 times as much snack food in the afternoon following their meal, compared to people who ate at a table just talking to each other.

The Hypothalamus

This is an organ deep in the brain that acts like a thermostat for our appetite and body weight. I will not try to do justice in this short article to the neural concomitants of satiation. AS far as appetite and weight control is concerned, the hypothalamus responds to leptin signals that come from fat cells. If leptin levels are high, the hypothalamus adjusts our nervous system to burn more energy and switches off our appetite.

Sadly, years of eating “the wrong kind of food” or overeating can deafen the hypothalamus to leptin signals. The culprit here is insulin – a hormone that we unwittingly overproduce when eating an unhealthful diet. Hypothalamic deafness to leptin means that no matter how much fat we carry, we continue to be hungry. Many people in large bodies we see eating large amounts of food have lost their hypothalamic “off-switch.”

A history of calorie reduced dieting

Dieting leads us to attend to what we “should” eat rather than attend to the natural signals of hunger and satiation. We also tend to eat less than we need to lose “fat”.  When we stop attending to our natural appetite, that is mistrusted, we stop knowing how and when we are full. Our eating will become permanently disinhibited (eating in for all sorts of reasons) and dysregulated (eating past the point of fullness).

The Reward (Opioid) centres of the brain

Eating satiation is also affected by how rewarding the eating experience is. Pleasure and satisfaction from an eating event contributes to fullness and not wanting to eat more. Years of eating high-fat-sugary foods leads to a dulling of the dopamine receptors that make eating a nice-good-enough-for-now experience. Binge eaters are often chasing the dopamine high that they find works less well for them, and they would find giving up binge eating difficult since normal eating doesn’t satisfy them anymore. If your opioid system isn’t doing its job, you may feel full or even nauseous, but you will keep needing to carry on eating.

Psychological Factors

The Eyes

We evaluate with our eyes in many cases how satisfying a meal or snack is likely to be. People who are blindfolded eat in some cases 50% less of a meal than if their eyes had been open.  In many cases we need less than we think will sate our appetite and delay future hunger. I am not recommending that we all eat on smaller plates, but we need to find a way to stop our eyes from telling us when its OK to stop eating.

Interoception

Interoception is the psychological ability to sense what is going on in the body. Many people with eating disorders and obesity who claim that they are never full, lack interoception and they have no idea when they are full. (and in the case of anorexia they may not know that they are hungry). Interoception is both intrinsic and it is a skill that is lost because of many things, including trauma. In therapy for obesity (and eating disorders) it is important to teach interoception. It is a simple but important skill, leading to better awareness of appetite, fullness and emotions.

Old habits die hard

Eating habits formed during the lifespan are affected by a huge range of influences regarding the amount or type of food we choose to eat. One example might be getting a needed emotional reward for clearing your plate when you are a child. In this way, the child becomes attuned to what they want to get rather than what their body says they need. Obesity therapists need to look carefully at the habits a person has formed. Might the explanation of why their client never feels full lie here?

Stress

The effects of psychological stress on the ability to “feel full” are variable. Stress may lead to fast or distracted eating or give some people tummy upsets and IBS. Obesity therapy must address stress as part of a treatment package that is designed to foster health behaviour change.

The eating Gestalt
Satisfaction and satiation after with any eating event depends on the eating event itself. Small things like sitting down at a table in a nice environment with nice tableware can contribute to psychological satisfaction as well as physiological satiation. People who eat on the run, in a car or in a haphazard way tend not to feel full, or the satisfaction is transient.

Conclusion

If you have a client who says that they never feel full, many things are going on. You may have to attend to all the things that I have listed as possible problems.

Perhaps begin with interoceptive awareness training and nutritional rehab. Ensure that the diet is as nutrient dense as possible with plenty of fibre and Omega 3 in the form of oily fish.  Make sure that the client begins eating slowly and without distractions. Above all, ensure that for a while there is no alcohol because booze muddles the appetite pathways.

There is no shortcut to restoring the ability to feel full on moderate amounts of food. Obesity therapy is a long slog, and the client deserves to give themselves the time to change.