Tag Archives: atypical anorexia

Refeeding Syndrome in Restrictive Eating Disorder Recovery

important

This is an extremely important post for those recovering from a restrictive eating disorder, so please take notice of this, as many of those recovering from REDs are unaware of RFS.

A lot of the text below is taken from the MARSIPAN: Management of Really
Sick Patients with Anorexia Nervosa (October 2010)
. It is very wordy so I took the most relevant parts to bring to your attention, but you can click the link above for the entirety of the MARSIPAN Guidelines. The text from MARSIPAN is referenced as so.

Firstly, I am going to share with you a simplified version of what refeeding syndrome is and how to recognise it.

Refeeding syndrome symptoms may occur when a person receives a large intake of carbohydrates following a period of starvation.

A severe shift in electrolytes takes place when an individual consumes a quantity of complex carbohydrates after a prolonged period of food deprivation. This in turn, causes fluid imbalances in the body, leading to the potentially fatal conditions of hypophosphatemia and heart failure.

Hypophosphatemia refers to an abnormally low concentration of phosphates in the blood stream. This is linked to the transport and cellular uptake of phosphorus and potassium due to excess insulin secretion. Refeeding syndrome symptoms arise when the malnourished person no longer needs to utilize stored fat and protein, and instead metabolizes carbohydrates. The resulting rapid discharge of insulin causes the drop in serum phosphate, producing the clinical symptoms of refeeding syndrome.

Unfortunately, certain early signs of refeeding syndrome may go undetected as they are somewhat unspecific. However, symptoms such as generalized weakness, seizures, muscle fibre breakdown, white blood cell dysfunction, low blood pressure, respiratory failure, arrhythmias, cardiac arrest, and sudden death have all been documented as part of this serious and even fatal syndrome.

Refeeding syndrome symptoms can be of concern to those recovering from eating disorders such as anorexia, as they are at risk of developing hypophosphatemia when starting to eat again. Medical supervision and monitoring by nutritionists and other health professionals familiar with this condition can help improve the outcome for those individuals struggling to re-gain normal eating behavior. (from here)

Below I share information that goes into far more detail in regards to refeeding syndrome, taken from the MARSIPAN guidelines, and the online Nursing Centre – this is quite complex and detailed information regarding refeeding syndrome in a hospital setting.

Re-feeding syndrome is a potentially fatal condition (World Health Organization, 1999; Winston et al, 2000; Crook, 2001; Casiero & Frishman, 2006; Mehanna et al, 2008) that occurs when patients who have had their food severely restricted are given large amounts of food via oral or nasogastric re-feeding as well as during TPN. It has been noted in outpatients with anorexia nervosa who have suddenly increased their food intake after several weeks of starvation. (MARSIPAN)

For example, someone who has been almost nothing could decide to recover and start eating a regular amount of food straight away. Their serum phosphate level could then fall dangerously and require oral phosphate supplements to correct this abnormality.

Electrolyte disturbances (primarily decreased levels of phosphorus, magnesium, or potassium) occur immediately upon the rapid initiation of refeeding-commonly within 12 or 72 hours-and can continue for the next 2 to 7 days. Cardiac complications can develop within the first week, often within the first 24 to 48 hours, with neurologic signs and symptoms developing somewhat later. (from here)

Re-feeding syndrome is characterised by rapid reductions in certain electrolytes, such as phosphate and potassium, caused by rapid transport into cells, and the resulting cardiac effects can be fatal. Avoidance of the syndrome can be achieved by gradually increasing nutritional intake. There is substantial variation in opinion about the level at which to start re-feeding a patient with anorexia nervosa. Some units follow NICE (2006) guidelines for adult nutrition support, which recommend starting at 5kcal/ kg/day for a patient weighing 32kg. Although the guidance excludes eating disorders, it is considered by some to be relevant to patients with severe anorexia nervosa. However, there is wide variation in its application, some physicians and dieticians applying it strictly and others regarding it as not applicable to this patient group. One of the very few published guidelines in this area from the USA, referring to the treatment of children with anorexia nervosa (Sylvester & Forman, 2008, p. 393), advises:  Patients start on 1250–1750 calories, depending on the patient’s intake prior to hospitalization and severity of malnutrition, and advance by 250 calories daily. For patients with very low weight (<70% average body weight), the protocol is altered and caloric intake requirements may be decreased to avoid re-feeding syndrome, and advancement takes place over a longer period. (MARSIPAN)

Sometimes physicians are torn between the risk of re-feeding syndrome, and the risk of further weight loss due to not eating enough which then could mean death. In addition;

One physician in the group suggested that it was perhaps less harmful to risk re-feeding syndrome, which can be monitored and corrected, than brain damage and death caused by low glucose in a patient with hypoglycaemia. It was also commented that if higher calorie levels were thought to be essential (e.g. to correct low glucose), a critical care approach with constant monitoring and correction of abnormalities should be considered. (MARSIPAN)

When it comes to dangerously sick patients with anorexia nervosa, the risks have to be weighed up and a decision reached as to what is more dangerous for the patient who is in a life-threatening condition. On the subject of avoidance of re-feeding syndrome:

Avoidance of re-feeding syndrome can also be encouraged by restricting carbohydrate calories and increasing dietary phosphate. When patients are prescribed oral or enteral nutritional supplements, consideration should be given to the use of high-calorie supplements (e.g. 2kcal/ml) as they have lower levels of carbohydrate and may therefore be less likely to produce re-feeding syndrome. Moreover, the diet should be rich in phosphate (e.g. milk) to help avoid the syndrome. The total fluid intake can easily exceed safe levels, and the recommendation is 30–35ml/kg/24h of fluid from all sources. (MARSIPAN)

Remember that the MARSIPAN Guidelines described above are based in a hospital setting. 

As for more understanding on what refeeding syndrome is:

To understand what happens during refeeding syndrome, first review the pathophysiology of malnutrition. Normally, glucose is the body’s preferred fuel, coming from the intake of carbohydrates. As the malnourished body loses access to carbohydrates, it shifts to catabolism of fat and protein. With this shift, the body’s production of insulin drops in response to a reduced availability of glucose. This adaptive change to protein breakdown during prolonged malnutrition also leads to a gradual loss of cellular and muscle mass, often resulting in atrophy of vital organs and other internal structures, including the heart, lungs, liver, and intestines.
Serious complications may occur as respiratory and cardiac function declines due to muscular wasting and fluid and electrolyte imbalances. Metabolic rate, cardiac output, hemoglobin levels, and renal concentration capacity also decrease.
The body is now surviving by very slowly consuming itself…
When a malnourished patient is given aggressive nutritional support, such as PN, a number of events ensue. These are primarily driven by the change in insulin secretion as a result of the shift from protein metabolism to carbohydrate metabolism. The increase in glucose levels, which results from the composition of the nutritional support formula, increases insulin release by the pancreas. This in turn promotes cellular uptake of glucose along with electrolytes, primarily phosphorus, magnesium, and potassium. The result can be a life-threatening depletion of these vital electrolytes. (from here).

Also,

[RFS] is extremely rare but is more likely to occur in a young person with rapid weight loss and a BMI – from here.

As said above, refeeding syndrome is rare. People at risk are generally people are underweight, and have severely restricted for a week or more. However, if you have been eating less than 1000 calories for a week or more, are excessively exercising, or have been purging frequently, you may be at risk of re-feeding syndrome, regardless of BMI. If this is the case please see a doctor to determine the risk of RFS. Depending on your risk you may be hospitalised to be monitored there, you may be monitored by your doctor, or you may be okay to go home and just get your parents or flatmates to keep an eye on you.

You are most at risk in the first 24-72 hours, so don’t panic if you have upped your intake quickly and were not aware of RFS and have been eating a normal amount for a couple of weeks. You will be out of the danger zone by now.

Milky products are also really good for those with lowered phosphate levels, and are easier for the body to absorb.

As said above, there is also a problem with people being over-cautious and not increasing by enough or fast enough. If you are being monitored in a hospital setting, the staff there will decide what your calorie increase rate is. If you are home and have been deemed to be at very low risk, I advise increasing your calorie intake by 250 calories every 2-3 days until you reach 2000 calories. From there it is safe to jump to your 2500-3000+ calories.

As for a more in-depth look at warning signs and symptoms:

First, let’s look at some normal functions of phosphate. It’s needed to produce adenosine triphosphate (ATP), which provides energy for almost all cellular functions. Phosphate is an essential part of RNA and DNA, and it’s needed in red blood cells for 2,3-diphosphoglycerate production for easier release of oxygen to the tissues. Patients with signs and symptoms of hypophosphatemia or phosphate levels below 2 mg/dL require oral or I.V. phosphate replacement.

Refeeding-induced severe hypophosphatemia (serum concentration less than 1 mg/dL) can result in respiratory failure from a decrease in available ATP, which is needed to maintain the diaphragm’s normal contractility. In addition, hypophosphatemia can cause red and white blood cell dysfunction, muscle weakness, and seizures. Other factors that can contribute to hypophosphatemia include vitamin D deficiency and excessive intake of antacids, which block phosphate absorption.

Hypokalemia (serum levels below 3.5 mEq/L) and hypomagnesemia (serum levels below 1.8 mg/dL) are also frequently associated with refeeding syndrome. Mild decreases of potassium and magnesium may cause nausea, vomiting, constipation, diarrhea, muscle twitching, or weakness. A more severe depletion of the serum concentrations of potassium and magnesium can cause dysrhythmias, cardiac dysfunction, skeletal muscle weakness, seizures, and metabolic acidosis.

Your patient with refeeding syndrome may develop muscle weakness, tremors, paresthesias, and seizures… In addition, she may have cognitive changes, including irritability and confusion. (from here)

Please take note of this post. Although rather dry, it is very important.

Feminism and Recovery from a Restrictive Eating Disorder

feminism

In recovery from my eating disorder, feminism has been one of my best friends, along with the body positivity movement, which I shall focus more specifically on in my next post. Feminism is a movement that believes in equality between men and women. I am aware that there are various different subsections of feminism, but to me, feminism only has one definition: equality between men and women, which includes all races, genders, and sexualities. Equality, between everyone, everywhere.

My partner between the ages of 19 and 21 was a feminist. He was passionate about politics, and although that didn’t interest me much at the time, my curiosity grew as I entered recovery. I’ve always believed in equality and so at heart have always been a feminist, but my real understanding of it and the way inequality had effected me personally dawned on me throughout recovery as I studied it more closely and became involved with it as a movement. I found that it had an impact in all areas of my life, not least in my recovery from my eating disorder.

feminism 2

Feminism empowered me as a woman, and as a person. It told me I could be who I wanted to be. It told me I did not have to be limited in the activities that I do, or the things that I am interested in. It told me I could wear whatever I wanted to wear. It told me that I did not have to conform. It told me that my body could be any shape, size, or weight, and still be not only acceptable, but beautiful. It told me that I am allowed to feel proud and strong and that no one has the right to try and bring me down. It told me that I hold as much worth as everyone else around me. This applies not only to women, but to men too. Feminism also taught me a whole lot about the sexism that exists around us all of the time in our every day lives – things you may not have even noticed, like casual jokes, or comments that put down women without us even realising it (“you scream/hit/run/etc like a girl” – as if being a girl is a bad or lesser thing, or “grow a pair” – like being a man is a stronger or better thing).

stop body shaming

Feminism is also extremely body-positive. It tells you that you can wear what you like, regardless of your weight, shape or size. It tells you to be proud of your body. It tells you that you can shave, or not shave, and that doing either is fine. It tells you that you can have short hair or long hair, that you can wear make up or go make up free, that you can wear a bra or not. It tells you that you can choose to do whatever you want with your own body, and that you can display it how you like. It tells you that you can be short, tall, fat, thin, black, white, man, woman, redhead, brunette, flat-chested, big-breasted, and so on and so forth, and be a beautiful, proud, confident person. You can have any type of body and accept it how it is and recognise that others should also.

feminism 7

Feminism taught me to embrace my body. My body is strong. It has kept me alive and has enabled me to be well again. It carries me and everything inside me. It enables me to go on countryside walks and play badminton with my friends. It is the strength to move furniture around and carry anything at all! It lets me see and touch and smell and hear and taste. It works every day to keep me as healthy as it can, and I work with it to do the same.

It also taught me that I am not just my body. I am a daughter, sister, friend, writer, reader, artist, photographer, poet, determinist, feminist, liberal, listener, warrior, traveller, baker, film buff, dreamer, and so much more. My body is fabulous, but it doesn’t define who I am. Feminism helped me to realise what is important and it helped me to realise what I am passionate about too.

Feminism planted a seed of power and confidence inside me, and it has been growing every since. It helped me to feel strong when I was feeling weak. It helped me to feel more positively about my appearance when I was struggling to look in the mirror. It helped me to appreciate my body when I was berating it. It helped me to fight when I wanted to give up. It helped me to develop pride in myself as a person when I was feeling worthless.

Feminism was invaluable to my recovery. I’m so thankful that I became aware of the movement when I did. Maybe it can help you too.

feminism 6 feminism 5 feminism 4 feminism 3

Am I Still Disordered?

confused

So you have been recovering for a fairly long time and have come a very long way. Your life has improved dramatically, you feel like you are eating well (what you want, when you want), and you’ve let your body rest up and repair, and haven’t engaged in formal exercise for a significant amount of time. You feel healthy, you feel pretty happy, and you’re wondering to yourself: how will I know when I am fully recovered? How do I know if my eating habits and thought patterns are still disordered?

This is definitely something that I thought about when I was recovering, and I am pretty sure it is something that you have thought about too. When exactly do you know when you are in remission as opposed to still recovering? When is that point where you go from one to the other? What signifies it?

The things that are disordered vary from person to person. One person may never has used coffee as an appetite suppressant or for energy during their eating disorder, and may now just enjoy a cup or two a day, whereas another may have used it and are still using it under the pretence of enjoying a cup or two a day, but are in fact not being honest with themselves that it is in fact driven by their eating disorder. One person may avoid some foods because they genuinely don’t like them, whilst others may avoid the same foods because their eating disorder has persuaded them that they don’t like them. It all varies from person to person, and it is about being 110% honest with yourself as to whether you are going to keep progressing forwards and reach remission or not. Because of these individual differences, it is hard to put together a whole list, but here are a few things that are signs that your eating habits and thought patterns are still disordered.

1. You are still worrying that food is going to make you fat, and you still worry about when to stop eating. This is something that when you are fully recovered you will not think about. You will eat what you want, when you want. You will eat when you desire to eat, and when you don’t have any desire to eat, you won’t. You will not worry about it “making you fat” because you know your body will maintain its natural healthy weight whilst you eat what you want, when you want.

2. You are finding reasons to not eat something. You should always eat what you want, when you want. If you are trying to find reasons not to eat something, then you are still having disordered thoughts. You eat when you want to eat, and you don’t eat when you don’t want to eat. By not wanting to eat, I mean that food is unappealing because you are not in any way hungry or needing any energy.

3. You are linking food and exercise together. Food and exercise should come separately. Burning off calories from your meals = disordered. Only allowing yourself to eat what you want because you have exercised = disordered. One should not effect the other.

4. You are still trying to control your weight. Being in remission includes accepting your body at whatever weight it is healthiest at naturally. That means trusting it to take you to that weight without you restricting any types of foods, exercising to try and keep your weight from going up, or trying to keep to a certain amount of calories without going over. It means eating what you want, when you want, and not exercising (or later on, only exercising for fun), and allowing your body to do what it needs to do.

5. You are trying to convince yourself that you enjoy exercise that you don’t really enjoy doing. Exercise should not be a part of your recovery. It should only be done in remission. If you are trying to convincing yourself that you love going to the gym when you don’t, start being honest with yourself. If your eating disorder has persuaded you that you love aerobics when actually you don’t, be honest with yourself. This includes “I’m doing it to be fit/toned/healthy”. That’s still disordered. Exercise should not be linked in your mind to changing your weight, shape, or size. Exercise that you don’t genuinely enjoy should not be done to get fit or healthy. It is the enjoyment that should come first and foremost, and the health benefits are secondary benefits that should have had nothing to do with the decision to do something physical. “I feel great after though!” is not a valid excuse. If you are going to do any form of recreational physical activity, you should feel good before doing it, whilst doing it, and after doing it, not just the latter. I would suggest checking out my videos on exercise here, here, and here).

6. You are avoiding certain foods or food groups. You might convince yourself that this is for “health” reasons, or you may even convince yourself that you don’t like them when actually you do. Again, this is about being really honest with yourself. Are you just trying to avoid them because they make you anxious?

7. You hate your body. Those in remission are able to accept their body as it is naturally. This doesn’t have to mean loving it. It just means being at least okay with it.

8. You lapse when you are stressed, angry, or upset. Those who are fully recovered have healthy coping mechanisms and do not respond to stressors by engaging in eating disorder habits.

9. You are still weighing yourself frequently. You do not need to weigh yourself any more. You don’t need to weigh yourself at all, ever. The number on the scales is irrelevant and for those with eating disorders, is a massive trigger. Those in full recovery don’t bother stepping on the scales because it’s meaningless and they don’t need to know their weight.

10. You keep planning ways to be “more healthy”. Those in remission eat what they want, when they want, and don’t need to think about “being healthy”, because what they are doing is what is truly healthy – listening to their body and not trying to control food or their weight, and eat what they desire, when they have the desire to do so.

Those are the ten things that sprang to mind when I thought about things that aren’t always entirely obvious to the person engaging in those habits or thought patterns. I hope this makes you think about where you are in recovery and if you still have some things to work on. Remember that these things take time, and you don’t have to rush to the finish line. If you try to do that, that finish line will get further away. Be patient and gentle with yourself, always.

Anxiety Management

anxiety 2

Anxiety can feel extremely overwhelming when in recovery for an eating disorder. As I talked about in the FAQ, it is pretty much impossible to avoid anxiety when it comes to the recovery process, and that is one of the reasons as to why recovery is so difficult.

Again, as I have said in the FAQ, I use this metaphor for eating disorders and recovery: There is a terrifying dragon in your garden, and every time you try to leave your house the dragon tries to eat you. You have a choice: you can resign yourself to being trapped in your house forever, or you can find a weapon and go out and fight it.
These are the choices you have regarding your eating disorder. You can either choose to remain trapped by it or you can face yours fears and fight it. You can only make the anxiety calm down and eventually stop altogether by facing your fears regarding food, weight, and other eating disorder habits. You can only make it stop by going against your eating disorder. For example, check out this path below:

path

This path has been created by people walking along it. Someone walked that way then another person did then another, and they all kept walking over this one track more and more, making the path deeper and more worn in until it was a very clear path that everyone would now automatically follow rather than walking along the grass beside it. This is what happens in your brain: the more you do something the more it becomes the norm to follow. So if you respond to your eating disorder over and over again, that becomes the habit to follow and not doing it creates anxiety. When you fight against your eating disorder, you start treading on the grass that isn’t the path. At first this is anxiety-provoking and scary, because it is not the norm, and it will continue to be scary for a while, but each time you are making more of a path in a different route. Eventually, that route will become a solid pathway, and the other one will start to disappear as grass starts to grow on it again. Eventually the old route will disappear and the new one will become the norm. What I am saying is that to do new things creates new neural pathways in the brain, making your new behaviours eventually become normalised (right now your old behaviours – those created by your eating disorder – are normalised because you have repeated them so often). This is when the anxiety will start to lessen. The more you do something the easier it will become, and eventually it will become easy, and the norm.

So anxiety is going to be something that you experience during your recovery. Maybe that anxiety occurs before you challenge yourself, maybe it occurs during, or maybe it occurs after, but either way, it’s there, and you don’t know what to do about it. You probably feel like responding to your eating disorder, which is probably telling you either not to challenge yourself, or to compensate for doing so. Ignore that voice. I know it is extremely hard but that voice is trying to make you sick. It is trying to get you to live in misery. Ultimately, it is trying to kill you. So how do you cope with that extreme anxiety when it is upon you?

anxiety

One thing that is important is distinguishing its voice from yours. Recognise what is you, and what is the eating disorder. Argue with it. Use your rationality. Use your logic. Use the facts against the negative feelings it is trying to evoke in you. Beat it with logic.

One of the best ways to deal with anxiety is to use distraction techniques. When you are feeling anxious, distract yourself by doing what you can get most absorbed in. Here is a list of suggestions:

  • Watch a movie
  • Read a book
  • Write
  • Paint or draw
  • Blog
  • Collage
  • Knit or sew
  • Research something you are interested in
  • Play XBOX
  • Play games on your phone
  • Do fun internet quizzes
  • Play computer games
  • Call a friend or family member
  • Meet up with someone
  • Watch a documentary
  • Play a musical instrument
  • Do homework
  • Tidy your room
  • Do some internet shopping
  • Take photographs
  • Do puzzles

Puzzles in particular are very good for distraction as they really engage your mind and so distract you from the negative emotions you are experiencing.

Other things that you can do include:

  • Doing things which evoke a different emotion in you from the one you are experiencing. This could mean reading emotional books or letters, or looking at photos that bring up happy memories. It could mean watching films that evoke a different emotion to anxiety, such as a comedy, romance, or even a horror! It’s also good to listen to happy music when feeling sad, or calm music when feeling anxious. We tend to listen to angry music when we are angry, or sad music when we are sad, but this only reinforced the emotion rather than helping it to settle down.
  • If you are really, really anxious, and feel like you can’t contain yourself and are reaching a very intense level of anxiety, you can use the ice diving technique. If you are on beta blockers, have a heart condition, or any other medical condition, consult a healthcare provider before doing this. The ice diving technique means filling a bowl with ice, and sticking your face in it. This lowers blood pressure, heart rate, and body temperature, which helps with distressing emotions and reactions and lowers the anxiety levels. It can take around 15-30 seconds for the effects to occur.
  • Changing your environment can be good when you are anxious. Whether that means going to an imaginary safe place in your head, going to a place in your house where you feel most safe, going for a brief calm walk, or going to a friends house, a change in scenery can help calm you down.
  • Keep your reasons to recover in mind and find purpose in those negative emotions. For example: “I’m doing this because I want to recover.” Knowing that these negative emotions are playing a part in moving forwards can help.
  • Relax your body. Tensing up, which is a natural reaction to anxiety and stress, signals to your body that you are in danger and therefore continues to make you feel anxious. Try to relax. Let your shoulders drop. Lean back into a sofa or lie down on the bed. Unclench your muscles. This signals to your body that you are not in danger, and so can decrease anxiety.

Anxiety relating to recovery from an eating disorder is unpleasant at best, and overwhelmingly awful at worst, but it is something that can be managed, and something that will improve when it as your recovery progresses. If you can, do get a therapist to help you to help yourself throughout this difficult time. Hang in there, you can do this!

Diagnosing Anorexia Nervosa VS EDNOS: What Does the Weight Criteria Really Mean?

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Making a distinction between EDNOS and Anorexia Nervosa is a tricky one when it comes down to the Atypical Anorexia Nervosa (a type of EDNOS) side of things. There are those that adhere to the strict weight criteria for the diagnosis of Anorexia Nervosa (even though there is now no specific cut off point in the DSM-V), and there are those that use it as a guideline. The argument on whether or not a specfic weight is required or not for the diagnosis of Anorexia Nervosa is rife across the eating disorder communities, so I decided to do some research on what the medical community has to say on the matter.

According to the DSM-5 criteria, to be diagnosed as having Anorexia Nervosa a person should display:

  • Persistent restriction of energy intake leading to significantly low body weight (in context of what is minimally expected for age, sex, developmental trajectory, and physical health) .
  • Either an intense fear of gaining weight or of becoming fat, or persistent behaviour that interferes with weight gain (even though significantly low weight).
  • Disturbance in the way one’s body weight or shape is experienced, undue influence of body shape and weight on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight.

The Subtypes of Anorexia Nervosa are: restricting type, and binge-eating/purging type.

(I should also first mention that the DSM-V has already been widely criticised, and The National Institute of Mental Health withdrew their support for the manual, stating that “patients with mental disorders deserve better.”  Another thing to consider is that the cut off point for what is a healthy BMI varies from medical institution to medical institution. Many use 18.5 as the cut off point. Others use 19. My pharmacist had a chart on the wall that stated that a normal BMI was between 20 and 25 (it also states that here). So that already can create problems when there is no consensus between medical communities on what is underweight. You can go to one doctor’s surgery and be told you are underweight and another where you are told you are not. Really, we should just be going on each personal individually, and using these charts as a guide.)

To start with, Kate Donovan wrote “Problems in the way we diagnose anorexia” – a blog post exploring the weight criteria when we still had the DSM-IV – which is relevant because Anorexia Nervosa is still being diagnosed using an outdated weight criteria.

The reason this is so important is that Atypical Anorexia Nervosa and Anorexia Nervosa are barely distinguishable – so why are there two different diagnosis’s dividing the two when they are the same disease and both require extremely similar treatment which only differs in terms of the individual rather than the label? Results of Jennifer Thomas’s study (The relationship between EDNOS and officially recognized eating disorders: meta-analysis and implications for DSM) indicated that EDNOS did not differ significantly from AN on eating pathology or general psychopathology, and “moderator analyses indicated that EDNOS groups who met all diagnostic criteria for AN except for amenorrhea did not differ significantly from full syndrome cases.” (Jennifer Thomas is an assistant Professor of Psychology at Harvard.)

In another of her studies (which is about the criteria in the DSM-IV “refusal to maintain body weight at or above a minimally normal weight for age and height e.g. weight loss leading to maintenance of body weight less than 85% of that expected”), she writes

“Although the 85% weight cut-off is intended to represent a ‘suggested guideline’ for diagnosis (APA, 2000, p. 584), investigators who enroll eating disorder patients in clinical trials (Dare et al. 2001; Powers et al. 2002) and insurance companies that determine treatment eligibility typically adhere to this percentage when assessing underweight. The 85% criterion is also frequently used to calculate AN prevalence in epidemiological studies (Walters & Kendler, 1995; Garfinkelet al. 1996), which inform the perceived public health significance of the disorder. The widespread use of the 85% criterion probably reflects a desire to standardize diagnosis across diverse settings.”

She also states;

“Data from clinical and non-clinical samples suggest that eating disorder not otherwise specified (EDNOS) is the most prevalent of DSM-IV eating disorders, and individuals who meet all criteria for AN except the weight cut-off represent a common subtype of this group (Watson & Andersen, 2003; McIntosh et al. 2004). A computer simulation of 193 eating-disorder treatment seekers indicated that the prevalence of AN would increase significantly if the weight criterion were relaxed from 85% to 90% of EBW (Thaw et al. 2001). It is therefore likely that if some clinics use more lenient methods of calculating EBW, they will diagnose a greater proportion of their patients with AN and a relatively smaller proportion of patients with EDNOS, even if they consistently apply an 85% cut-off.”

Jennifer Thomas also makes an important point regarding diagnosis and treatment regarding weight cut off points:

“The finding that investigators use different weight criteria for AN has important implications for eating disorder diagnosis, treatment, research and insurance reimbursement. Our results raise the possibility that a patient of a particular height, weight and symptom profile could receive a diagnosis of AN at one treatment center and a diagnosis of BN or EDNOS at another, and be eligible for one investigator’s AN treatment outcome study but not another. On average, discrepancies are possible within a 15-lb weight range for females and a 25-lb weight range for males, and could occur even if the assessing clinicians at each treatment center referred to the same DSM-IV criteria to assign diagnoses. If each clinician then attempted to recommend an evidence-based treatment, the patient diagnosed by the stricter weight cut-off and therefore classified as BN or EDNOS might receive out-patient therapy whereas the patient diagnosed by the more lenient weight cut-off and therefore classified as AN might receive a more intensive intervention (e.g. in-patient care) because of the perception that he or she is more underweight.”

She also made the following comment on a post by Science of Eating Disorders (‘Are There Any Meaningful Differences Between Subthreshold and Full Syndrome Anorexia Nervosa?’):

“I share your frustration with the 85% EBW guideline — it’s not only arbitrary but inconsistently applied (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847836/). Interestingly, the DSM-IV Work Group never meant it to be a “cut-off” (just a guideline), so it’s a good thing it’s being omitted from DSM-5. My work also suggests that EDNOS is typically just as severe as AN and BN (http://www.ncbi.nlm.nih.gov/pubmed/19379023), and clinically I think too many patients find their suffering invalidated when they are diagnosed not with a specific eating disorder, but an acronym. I also agree with you that DSM-5 represents a big improvement (especially the inclusion of named subtypes like purging disorder)…”

The post by Science of Eating Disorders (which is linked above) talks about a study conducted by Daniel Le Grange and colleagues, published in the European Eating Disorders Review, where they compared eating-related and psychopathology measures between 59 anorexia nervosa and 59 subthreshold anorexia nervosa women, and found that there were no differences between the two other than the bingeing and purging frequency, which was higher in the AN group, and body checking behaviours, which was higher in the EDNOS-AN group. They said:

“There is little evidence that participants with EDNOS-AN were any different from those with AN. Therefore, our results confirm the now accepted notion that menstrual status is probably not a helpful diagnostic marker for AN (Attia, Robero, & Steinglass, 2008) and also challenge the generally accepted cut point of 85% of ideal body weight (or BMI 17.5 ) for a diagnosis of AN.”

We know that the weight threshold that is used so rigidly by some can cause massive problems for those seeking treatment: many insurance companies and inpatient facilities will only accept those meeting the “anorexic BMI” criteria – even though the specific weight criteria has been removed with the publication of the DSM-V. We also know that the DSM-V is to be used as a guide, and that the “anorexic BMI” is also a guide, not an absolute. There is no weight that you MUST be to be diagnosed with anorexia nervosa.

What I’ve seen from observing both the reactions from some who have suffered from eating disorders (specifically those who have, or are in recovery from, anorexia nervosa) and doctors in response to the idea that you don’t have to meet the weight criteria (that actually doesn’t exist any more in the DSM-V) of 17.5 to be diagnosed with anorexia nervosa, it is those with anorexia that tend to become outraged when it is suggested, whereas all different doctors have different opinions, many leaning towards using the manual as a guideline. Medical professionals that I have spoken to recently do not believe in weight criteria rigidity being exceedingly important to the diagnosis of Anorexia Nervosa. I recently spoke to a doctor in the UK, and a medical director in the US. Both told me that the DSM-V (and the ICD-10) are guidelines, and are to be used as such. When asked about anorexia, EDNOS, and the weight criteria, the US medical director said it is subjective:

“DSM criteria are not absolute, like many things in medicine with variable presentations, symptoms, and severities. The diagnostic criteria are best used as a guide. Unfortunately some take it too literally (many payors, insurances, etc) will not cover care unless strictly adherent to these criteria. I believe the key is to recognize and anticipate before the process progresses to a unstable or potential irreversible condition…Following strict criteria in my opinion results in delayed therapy of patients in worse conditions.”

In the DSM-V, it states:

“Criterion A requires that the individual’s weight be significantly low (i.e., less than minimally normal or, for children and adolescents, less than that minimally expected).Weight assessment can be challenging because normal weight range differs among individuals, and different thresholds have been published defining thinness or underweight status. Body mass index (BMI; calculated as weight in kilograms/height in meters2) is a useful measure to assess body weight for height. For adults, a BMI of 18.5 kg/m2 has been employed by the Centers for Disease Control and Prevention (CDC) (Centers for Disease Control and Prevention 2011) and the World Health Organization (WHO) (World Health Organization 1995) as the lower limit of normal body weight. Therefore, most adults with a BMI greater than or equal to 18.5 kg/m2 would not be considered to have a significantly low body weight. On the other hand, a BMI of lower than 17.0 kg/m2 has been considered by the WHO to indicate moderate or severe thinness (World Health Organization 1995); therefore, an individual with a BMI less than 17.0 kg/m2 would likely be considered to have a significantly low weight. An adult with a BMI between 17.0 and 18.5 kg/m2, or even above 18.5 kg/m2, might be considered to have a significantly low weight if clinical history or other physiological information supports this judgment. For children and adolescents, determining a BMI-for-age percentile is useful (see, e.g., the CDC BMI percentile calculator for children and teenagers). As for adults, it is not possible to provide definitive standards for judging whether a child’s or an adolescent’s weight is significantly low, and variations in developmental trajectories among youth limit the utility of simple numerical guidelines. The CDC has used a BMI-for-age below the 5th percentile as suggesting  underweight; however, children and adolescents with a BMI above this benchmark may be judged to be significantly underweight in light of failure to maintain their expected growth trajectory. In summary, in determining whether Criterion A is met, the clinician should consider available numerical guidelines, as well as the individual’s body build, weight history, and any physiological disturbances.”

This means that people need to be treated on an individual basis, and not strictly by a weight criteria.

What I find worrying is that some (emphasis on some) of those with the diagnosis of Anorexia Nervosa feel that the criteria should be rigid: so much so that they actually believe that it is. I would suggest that this is because some can see it as a badge of honour that you only “deserve” when you reach a certain weight. Those with such black and white thinking regarding AN are particularly (and disorderedly) protective of the diagnosis. This only reinforces to those diagnosed with EDNOS that they are “not sick enough” until they have “achieved” that particular BMI. It also reinforces the (untrue) notion that you can only be diagnosed with AN at a certain weight, and this results in the spreading of misinformation.  It is important that we are educated about the facts, rather than going purely on beliefs when we are not medical professionals ourselves. The negative emotional connection some of those with Anorexia Nervosa seem to have to the diagnosis and the “badge of honour” mentality can cloud judgement and rational thought, and become an issue as it invalidates others.

Obviously in no way is this article intended to invalidate those with EDNOS. In fact, I hope to validate the diagnosis more as those with EDNOS routinely present with symptoms and behaviours that are as serious as AN or BN. My aim was to show that there is barely any difference between those with Atypical Anorexia Nervosa and those with Anorexia Nervosa, and it is my opinion that they should all be diagnosed with the same illness, and any difference in physical symptoms be treated accordingly. Any doctor or professional who is worth their salt will pay attention to the mental and physical condition their patient is in and diagnose that way, or if they have been diagnosed before, they will reassess and treat accordingly. Using the guidelines as absolutes can be extremely harmful, misguided, and unhelpful, and spreading the notion that they are absolutes within the eating disorder community on social media and within our culture in general, is harmful to those seeking help, support, and treatment.