Redefining EDNOS

The New York Times had a wonderful article by Abby Ellin, author of "Teenage Waistland: A Former Fat Kid Weighs In on Living Large, Losing Weight and How Parents Can (and Can’t) Help," called Narrowing an Eating Disorder, which looked at the troublesome diagnosis of EDNOS and what should and could change for the DSM-V.

Writes Ellin:

To maintain some semblance of control, I divided my eating into Food Days and Nonfood Days: that is, days when I consumed vast amounts, and days when I policed my caloric intake with military precision. The routine kept my weight in check, more or less. Never mind that it was insane.

No one at my college health center knew what to do with me. Clearly, I wasn’t anorexic; I was slightly round, in fact. I didn’t purge, so bulimia was out. To my distress, the counselors told me there was nothing they could do for me and sent me on my way.

Today, I would probably qualify for a diagnosis of “eating disorder not otherwise specified,” usually known by its acronym, Ednos.

The majority of eating disorder diagnoses are, in fact, EDNOS. I'm not saying that the EDNOS category isn't useful (it can capture emerging trends in ED behaviors that might not fit into any other specified categories rather than just ignoring them), but if "not otherwise specified" is the most common diagnosis, it's a sign that we don't do a good job of defining what eating disorders exist out there. In a major study on the severity of EDNOS (Fairburn et al 2007), researchers found that:

These cases closely resembled the cases of bulimia nervosa in the nature, duration and severity of their psychopathology. Few could be reclassified as cases of anorexia nervosa or bulimia nervosa. The findings indicate that eating disorder NOS is common, severe and persistent. Most cases are "mixed" in character and not subthreshold forms of anorexia nervosa or bulimia nervosa. It is proposed that in DSM-V the clinical state (or states) currently embraced by the diagnosis eating disorder NOS be reclassified as one or more specific forms of eating disorder.

Fairburn in particular is known for his thinking on the "transdiagnostic model of eating disorders," which he explores in depth in a paper titled "Cognitive behaviour therapy for eating disorders: a “transdiagnostic” theory and treatment." Fairburn believes that the varying clinical symptoms and psychopathology of eating disorders are maintained by similar processes (clinical perfectionism, core low self-esteem, mood intolerance and interpersonal difficulties), that distinguishing between different ED diagnoses is the psychiatric equivalent of hair-splitting. Simply speaking, eating disorders have far more similarities than they do differences. Whether or not you entirely agree with Fairburn (I'm not entirely convinced myself), he does have some very good points.

With the upcoming DSM-V revision, clinicians and researchers have been looking at potential changes to the ED diagnostic criteria. A recent full-text article in the International Journal of Eating Disorders titled "Broad categories for the diagnosis of eating disorders" received great coverage over at Psychotherapy Brown Bag, and rather than reinvent the wheel, I will leave you to their wonderful shake-down of the evidence and its implications.

Dr. Tim Walsh at Columbia University had a great quote on the issues with the "EDNOS" diagnosis as it is currently used:

“The consensus is that Ednos is ‘too big,’ meaning it is being used more frequently than is desirable, as that label does not convey much specific information,” said Dr. B. Timothy Walsh, a professor of psychiatry at Columbia who is chairman of the eating disorders work group for the new manual.

Then there are the intricacies of the psychology so unique to eating disorders that also presents problems with the EDNOS diagnosis:

“A lot of patients feel this stigma if they know they’re diagnosed with Ednos: ‘Obviously, I’m not good enough to be anorexic,’ ” said Nicole Hawkins, director of clinical services at Center for Change, an eating disorder treatment center in Orem, Utah. “I’ve had many patients feel that they need to lose more weight so they lose their period so they can change the diagnosis. Patients really feel they have to get ‘better’ at their eating disorder to deserve treatment.”

Perhaps the most erudite comment in the whole article that completely exemplifies what is wrong with the DSM in general and EDNOS in particular is from Dr. Craig Johnson of the Laureate Eating Disorders Clinic.

“What Ednos really demonstrates,” said Dr. Johnson, at Laureate in Tulsa, “is that we don’t have empirically derived diagnoses in psychiatry."

I don't generally read the comments to articles like this, but there was one comment from the Well blog post on this article that completely exemplifies our culture's messed-up relationship to eating disorders:

Could someone please explain which alternating Food/Non days is a disorder. If it helps one manage food, sounds just fine with me. It ain’t gonna kill the patient!!!

Except that it very well might.

For more reading on the DSM-V and eating disorders, check out these full-text articles from the International Journal of Eating Disorders.

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M said...

On the one hand, we have Dr. Walsh saying EDNOS is too big, but any one day's worth of social-media posts seem to say that the category isn't big enough to include everyone who is suffering a relationship with food, body, emotion and behavior.

The study group can posit that EDNOS isn't specific enough, or specific in the most relevant ways, but the nature of culture in this era seems to be such that the category could never be inclusive enough.

The disorder and disruption of food/body/mind relationships is so prevalent, widespread and normalized that even dangerous disordered eating (or personally/interpersonally problematic) shouldn't/can't rise to the clinical, diagnostic definition of "eating disorder," or that definition means very little.

That isn't to say that people aren't in pain; don't have another (currently) diagnoseable psychiatric or medical condition; don't suffer from personality traits that are detrimental to lives, health, relationships, functioning; or that people don't deserve attention and help.

Diagnosis drives compensation and treatment, but maybe part of the question and solution is to determine what kind of treatment/attention will address the symptoms.

For those that meet the criteria set for specific eating disorders, maybe that's one place to start but not the continuation or endpoint. Maybe those who don't meet clinicians' best-definition criteria receive treatment for the most pressing presentation (and since it's not really about food, then there must be something underlying that can direct treatment) ... anxiety, depression, coping skills training, relationship support, addiction, personality disorders, situational stress/tranisitions/grief, trauma, spectrum disorders, learning disabilities, attention disorders, if they received nutrition education and indicated medication trials, etc. Maybe the result could be the same or better than if patients got the "coveted" label.

Front-line treatment for eating disorders is pretty much solely about stabilizing symptoms, behavior and weight restoration ... so an ED diagnosis might not do much, practically speaking, for those with subclinical features or co-morbid problems.

If you don't need to be locked up, watched like a hawk, with little freedom, on a carefully controlled mealplan for weight-restoration, in a specialty unit under controlled conditions that probably mean being out of your home environment (real life), then you're better off getting validation for presenting complaints, issues, etc., and addressing those. Particularly since grouping patients with severe symptoms often leads to patients with less-severe symptoms to feel further invalidated ("I'm not as bad off as him/her, so I must not have a problem ... then the focus is *still* misdirected from the real, driving problems to the perceived issue of a diagnostic label).

I think the most salient issue in this debate is validation (and access to help regardless of applicable diagnoses), followed by compensation issues.

Cathy (UK) said...

DSM doesn't have the same standing in the UK as it does in the USA, in part because we have a different funding system for healthcare; however, I dislike the current DSM IV diagnostic criteria for anorexia nervosa (AN). I won't ramble on at length about why this is so on this blog; I have made a video on my YouTube channel about this: (, but I do feel that the whole 'body image' criterion should be removed from DSM for AN. This is because inclusion of the body image criterion suggests cause and effect, and that AN is a 'disorder of body image', which I do not believe is always the case. What I do believe is a 'common denominator' amongst all cases of AN is identity. People remain in AN, in part because it feels to become part of their identity.

Before I gained > 30 pounds I had a 28 year history of very low weight AN. Under the current diagnostic criteria I would have been classified as EDNOS, or 'atypical' AN.

In terms of Fairburn's model: I personally see AN and bulimia nervosa (BN) as being distinct. There is plentiful research evidence that BN is often a culture-bound syndrome whereas AN is a developmental disorder. True, during re-feeding from AN, some patients develop BN, but some people never cross over categories. I, for one, have never had any urge to binge or purge.

I guess it's important to categorise EDs in some way for the purposes of insurance and disability, but I do feel that in terms of treatment, it's essential that an individual approach is employed - i.e. that a person's unique, specific difficulties are addressed rather than clinicians employ a 'one-size-fits-all' approach.

The only aspect of treatment that applies to all EDs is to encourage healthy/adequate eating and correct unhealthily low/high weight. I just don't feel that there is such a thing as 'standard' psychological therapies. If clinicians/researchers ever develop a standard, effective psychological therapy for AN I will eat my hat...

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Katie said...

I have to disagree with the comment by M. I know a lot of people with EDNOS and it can have just as profound an effect on functioning and health as typical anorexia or bulimia. I am sure I read a review of one study on your blog Carrie that found a higher mortality rate for EDNOS than AN or BN. Just because someone doesn't meet the strict criteria for anorexia or bulimia doesn't mean they don't have an eating disorder and wouldn't benefit from the same sort of treatment. For example, I had EDNOS for ten years before it developed into more typical anorexia, and even then I lacked the body image distortion. My diagnosis was actually a-typical anorexia because of the facets of emetophobia and OCD, although I was actively trying to lose weight in an anorexic way as well. Another subtype of eating disorder that is currently often poor catered for by services is purging anorexics/low weight bulimics. A lot of people think that purging anorexics binge and purge on small amounts or only occasionally and this is true for some, but many people have full blown bulimia at a very low weight and have both sets of issue - addiction, impulse control AND malnutrition, fear of being at a healthy weight, etc. This group isn't really accounted for in diagnosis or treatment, yet it is the most immediately medically dangerous collection of symptoms.

People always forget as well that the biggest cause of death from eating disorders is suicide. You don't have to be medically compromised to have your behaviours around food and the feelings they cause drive you to desperation, and I think I was far more at risk of suicide when I was alternating between restricting and bingeing but at a healthy weight than when I was restricting, numbed by being at a very low weight and fit the diagnosis of anorexia. EDNOS is used far too often as a way to suggest that someone is not sick enough for treatment, but the eating disorder itself is very real and very distressing. I don't believe for a second that all eating disorders should be treated in hospital, but EDNOS should be taken seriously and more effort should be put into researching the specifics of subtypes of eating disorders.

Anonymous said...

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M said...

Katie, I think we are making similar comments ... I didn't say patients classified with EDNOS shouldn't receive treatment or that the conditions of their illness aren't severe or life-threatening.

But, it doesn't require an ED diagnosis to receive help for suicidal ideation, OCD, phobias, addiction, depression, despair, anxiety or compulsive behavior. All the issues/problems that contribute to the ED symptoms, behaviors and medical/psychiatric conditions ... can *still* be treated, under those diagnostic codes.

I know patients who have said they were suicidal when they weren't because they knew insurance would certify at least 72 hours. It's sad that compensation issues drive so much of this, but you most definitely do not need an ED diagnosis to get medical and psychiatric/psychological help.

The DSM helps clinicians guide/direct treatment, leads insurance reimbursement and is a determinant for SSI/Disability. There are financial implications. It is more validating to know that someone recognizes your pain, your symptoms, your struggle, the disorder in your life ... that whatever is making you miserable is bad enough to "count."

But making patients feel more justified in seeking help isn't a good reason to make the criteria categories so broad that they aren't medically definitive/helpful. Again, I think it's access to treatment for whatever ails you, regardless of particular diagnostic labels. This access is, unfortunately, often tied to the DSM ... but that could be reconsidered by individual programs and by health care.

I think the criteria need revision ... to what extent and driven by what reasons, I'm not sure about yet.

Niika said...

I actually think the person in this article should have been diagnosed with non-purging bulimia, since restricting was obviously a way to make up for binge days in this case. So, in fact, the person in this article wasn't EDNOS at all, but bulimic.

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Quite a nice blog!, even though I haven't suffered of such a devastating mental disease I like to read and get as informed as better about anorexia.

Paramjit said...

I read your article with great interest. First of all I truly appreciate the effort that has gone into a well researched article like this. I am very passionate about weight loss and why people eat the way they do. You seemed to touch on a lot of points here that resonate with me. So it seems that besides anorexia and bullemia, there is this whole grey area called EDNOS. This may help to explain some of the strange eating habits of some of the people that I know. The only question is how to manage these habits. The biggest challenges are when people with these EDNOS type eating start looking for the quickest way to lose weight. This is when problems really start at least from my experience. Their eating habits has already messed up their metabolism and then they look for quick fix solutions that put a solution completely out of reach. they end up being on an endless downward spiral.

I would really like to hear your thoughts about this as I see you from a point of authority. How to help these people? Just telling them to exercise more and eat healthy does not seem to work.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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