A few days ago, Therese Borchard (I blogged about another one of her posts here) wrote an excellent column in the Huffington Post called "I'm not bipolar; I HAVE bipolar." And the title is pretty self-explanatory: that we are not our illnesses, because the illness is just one aspect of our lives.

Writes Borchard:

For those of us with chronic illnesses that we can't imagine away, I believe Dr. Remen simply encourages us to make decisions as individuals, not necessarily as bipolars, or diabetics, or cancer victims. We will always have to be mindful of our diagnoses, of course, in our relationships and work ventures. Because we need to surround ourselves with supportive people who will undergird our recovery, and we must maneuver our careers in ways that will aid our health.


And perhaps it's that one bit--being mindful of our diagnoses--that struck me the most. There are times when I am sick of thinking about food, sick of making sure I always have an energy bar with me, sick of preparing balanced meals. I want to forget. But I need to stay mindful of the fact that I do have an eating disorder and I am still very new to recovery and that recovery can easily be derailed by convenient amnesia.

Yet the fact that I have an energy bar in my purse and a chip on my shoulder at mealtime doesn't mean that this is all there is to me. True, I think about my eating disorder and related topics (food, calories, weight, etc) way too freaking much. And I have to keep my eating disorder history in mind when I go to make decisions (guaranteed lunch breaks at work, not buying a treadmill, not letting sleep patterns get chaotic) but that doesn't mean that I am my eating disorder. I'm Carrie who does in fact have an eating disorder, but I'm also a writer, a daughter, a friend, and a kitty mom.

The hard part is finding the balance between not labeling myself as "anorexic" and also not disregarding the limitations my diagnosis has given me. Long days without eating? Extremely physically demanding job? Working at Weight Watchers? Not an option--or at least not an option that will end well. Usually, I flip from one extreme to the other, in a classic case of black and white thinking. Either I'm terrified of everything because it might trigger ED symptoms, or I just take this eff-it-all attitude and think I can handle everything. Like most things in life, the answer lies somewhere in between: acknowledging your diagnosis but not letting it rule your life.

I blogged about the changes to the DSM-V criteria for eating disorders here and here when they were announced in February. I posted the original draft criteria in my blog the day they were announced, so you can refer to them for the changes. And there were two- two MAJOR changes that has me rather excited. I submitted my blog posts to the APA website per their request for comments, and let's just say that our voices have made a difference.

First major change

The "85%" weight criteria for anorexia has been dropped. It has been replaced with the word "markedly" and the new criteria reads as follows:

Restriction of energy intake relative to requirements leading to a markedly low body weight. Markedly low weight is defined as a weight that is less than minimally normal, or, for children and adolescents, less than that minimally expected for age and height.

Which is good, because a low body weight for one person may be normal for another, and the 85% criteria assumes that there is one "ideal" body weight for all 6.5 billion of us.

Second major change

The Eating Disorder Workgroup has changed the definition of "purging" in bulimia nervosa to include fasting, excessive exercise, and abuse of medications. They eliminated the difference in DSM-IV between purging/non-purging bulimia nervosa and just lumped them all in together. The new explanation of purging for BN reads as follows:

Recurrent inappropriate compensatory behavior in order to prevent weight gain, such as self-induced vomiting; misuse of laxatives, diuretics, or other medications, fasting; or excessive exercise.

You can still comment on the altered criteria until April 20.

As I promised two days ago, here are my thoughts on the other changes made to the DSM. I blogged previously about my thoughts related to the changes made about anorexia nervosa, so now it's onto the other diagnoses.

Bulimia Nervosa

The changes to the BN diagnosis were twofold:

• the frequency of binge eating and purging was decreased from 2x/week for 3 months to 1x/week for three months


• the "non-purging" BN subtype was eliminated, and merged with Binge Eating Disorder

The first criteria is pretty straightforward and there is quite a bit of evidence to indicate that so-called "sub-threshold" bulimia is just as severe as "threshold" bulimia in the DSM-IV (Krug et al, 2008; Wilson and Sysko, 2009). This change isn't anything I have any desire to argue with.

The second criteria is more problematic. The drafters of the ED criteria for DSM-V had this rationale about the change:

DSM-IV requires that sub-type (purging or non-purging) be specified. A literature review indicated that the non-purging subtype had received relatively little attention, and the available data suggested that individuals with this subtype more closely resemble individuals with Binge Eating Disorder. In addition, precisely how to define non-purging inappropriate behaviors (e.g., fasting or excessive exercise) is unclear.

Deletion of this subtype is recommended. This also requires rewording of Criterion B.

Criterion B specifies "inappropriate compensatory behaviors," and these behaviors would be limited to self-induced vomiting, and misuse of laxatives and/or diuretics. To some extent, I see the difficulties in defining fasting or excessive exercise- it isn't clear. But my next question would be then to define the "misuse" of laxatives and diuretics. So if you binge and then you can't take a crap and you swallow a few pills, is that misuse? What if the box says take two to four pills, and you always take four because you're convinced that any less wouldn't get the food out. Is that misuse? You're following the directions on the box, after all. If they specified "use" of laxatives and diuretics to specifically try and "undo" a binge, then I wouldn't probably be so prickly. It's clear that it's a purging behavior. But misuse? If the idea is to get rid of unclear definitions, I'm not entirely sure they did that.

My other question is this: I thought fasting and exercise were kind of considered forms of purging. I'm not sure what the distinction is--does purging have to involve your mouth or your butt? Sorry to be kind of crass, but I'm still trying to figure that one out. It's one thing to remove the subtypes and just create a "bulimia nervosa" definition that encompasses both purging and non-purging types, but I'm not positive on the wisdom of removing fasting and excessive exercise from the BN criteria.

The DSM-V draft criteria cited a study titled "The Validity and Utility of Subtyping Bulimia Nervosa," which came to the following conclusions:

Another possible reason for the lack of data on individuals with BN-NP may be a problem in diagnosing these subjects. Individuals who would qualify for the diagnosis BN-NP may go unnoticed or be wrongly diagnosed as BED or ED-NOS as a result of incomplete assessment of nonpurging compensatory behaviors. Both dieting and exercising are common in the general population, and are not necessarily pathological. There is no clear criterion to decide at what point the amount of exercising and dieting exceeds a cut-off point and becomes abnormal. This does not mean that nonpurging compensatory behaviors are clinically irrelevant. A number of studies have provided information that both purging and nonpurging compensatory behaviors are important clinical markers, for example, they both have high rates of comorbidity; their frequency is associated with severe maladaptive core beliefs and they are associated with impaired social functioning. The lack of clear definitions of nonpurging compensatory behaviors combined with their clinical relevance highlights the need for better diagnostic criteria.

Although the number of subjects with BN-NP [non-purging bulimia nervosa] is generally lower than that of BN-P [purging bulimia] and BED, in some studies the rates are comparable to, or in favor of, BN-NP, notably for three of the five general population studies. This may be a result of the more standard use of (semi-) structured diagnostic interviews in this type of study, in which the presence of nonpurging compensatory behaviors is routinely checked. Again, this calls for increased attention to the formulation of clear and easy to apply diagnostic criteria for nonpurging compensatory behaviors.

The study called for one of three possible solutions to this subtyping issue:

1. Maintain the current situation by keeping BN-NP as a subtype separate from BN-P as in DSM-IV, that is, a distinction between purging and nonpurging types of compensatory behavior in people who binge eat.


2. Eliminate nonpurging compensatory behavior as a diagnostic criterion. Individuals
   receiving a diagnosis of BN-NP in DSM-IV would be designated as having BED.


3. Inclusion of BN-NP in a broad BN category, as suggested by Walsh and Sysko, where a combination of binge eating with only nonpurging forms of compensatory behavior would be considered an atypical form. This would require a clear definition of the normal/abnormal boundaries of food restriction and exercising.

Obviously, the decision was made in favor of option 2.

How the specific vagaries of diagnosis will affect treatment remains to be seen. The irony is that most treatments for BED recommend physical activity--which is fine, but not for someone who uses exercise as a compensatory behavior. The debate isn't settled, and I'm not sure what I would do myself if I got to have the DSM Magic Wand.

Binge Eating Disorder

Binge eating disorder was included, which was a HUGE victory (no pun intended). BED is been fairly well defined for quite some time, and there are specific treatments that can help people struggling with binge eating.

The frequency of binge eating was specified at 1x/week for three months to make it more in line with the BN diagnosis. This seemingly low threshold for binge frequency has gotten some people up in arms. Writes psychiatrist Allen Frances in an article titled "Opening Pandora's Box":

Binge Eating Disorder will have a rate in the general population (estimated at 6%) and this will probably become much higher when the diagnosis becomes popular and is made in primary care settings. The tens of millions of people who binge eat once a week for 3 months would suddenly have a “mental disorder”― subjecting them to stigma and medications with unproven efficacy.

This is certainly a valid concern (a diagnosis should adequately capture all people who are ill with a disorder and none of those who aren't), but just because a diagnosis is more common doesn't mean it's not real. Also, the problems with people being subjected to medication seems more of a problem with our messed-up health care system and non-specialists making rather specialized diagnoses (I wouldn't want my cardiologist trying to diagnose my foot problem) than with the actual diagnostic criteria.

If the criteria for BED was just one binge a week for three months, I'd be much more willing to concede Dr. Frances' point. However, there are other criteria for BED that include feeling overly guilty or disgusted with oneself; the feeling of not being able to stop eating; feeling depressed afterwards; etc. Occasional overeating is unlikely to happen alone and result in "marked distress."

Still, Frances' overall argument is interesting and timely and well worth reading.

Purging Disorder

Rachel at The F Word pointed out the lack of formal inclusion of purging disorder in the DSM-V by highlighting this paragraph from the EDNOS section:

The work group is considering whether it may be useful and appropriate to describe other eating problems (such as purging disorder–recurrent purging in the absence of binge eating, and night eating syndrome) as conditions that may be the focus of clinical attention. Measures of severity would be required, and these conditions might be listed in an Appendix of DSM-5. If these recommendations are accepted, the examples in Eating Disorder Not Otherwise Specified will be changed accordingly.

I'm not surprised that purging disorder didn't make it in as a stand-alone diagnosis, not because the data isn't good--it is--but that it's rather new. Rachel has a whole post devoted to purging disorder that is well worth reading, and you can find more studies on purging disorder here.

A few weeks ago, I posted on the draft criteria for eating disorders proposed for the DSM-V, and I promised you my thoughts on the changes (or lack thereof). I spent several days mulling over my thoughts, and then I spent the rest of the time following the ongoing discussion on an eating disorders listserv. The discussion still hasn't concluded, but since it doesn't show any signs of slowing, I decided to bite the bullet and get on with it.

As an overly brief summary, the three most major changes to the current DSM diagnostic criteria for eating disorders were:

• removing amenorrhea as a criteria for anorexia
• removing the purging/non-purging subtypes for bulimia (non-purging bulimia would be considered, essentially, binge eating disorder)
• the addition of binge eating disorder as a stand-alone diagnosis

First off, I want to credit some other awesome bloggers for their thoughts on these changes. Both Rachel and Kim had some thoughts that are well worth reading, and I highly encourage you to do so.

Since I have many thoughts, I decided to break this post into several parts. I decided to start with anorexia, since that's where I have the majority of my thoughts, and I will post the next part on other diagnoses tomorrow.

Anorexia Nervosa

The removal of the amenorrhea criteria is, in my mind, a really good thing. I have no quibbles with that. What is rather interesting is what stayed the same. Both my regular readers Cathy and Katie pointed out that the "overvaluation of weight and shape" isn't universal to anorexia, nor is it necessarily what is driving anorexia. In Kim's blog on the DSM-V criteria, she writes:

In my opinion, the DSM doesn't really do service to the underlying drivers of anorexia. I think most self-destructive behaviors are a way to self-medicate, and I'm very aware that my anxiety went way, way down when I was heavily involved with my eating disorder. Everything seemed very peaceful and quiet when my mind was just tallying calories. For me, recovery is about learning to manage anxiety in a healthy way. It has very little to do with appreciating the Dove beauty campaign. Yes, there are days when I "feel fat," but this mostly translates to "I feel stressed." Somehow, they got linked in my mind (stress-->fat-->eat less-->less stress), but that doesn't mean the driver is for me to be thin; the driver is for me to be calm, and thinness was the result.

The DSM sort of supports the idea of Ralph Lauren ads and anorexia being paired. I just don't see this. This direct linkage seems to fuel the fire that eating disorders are adolescent obsessions with looking good. That fuels another fire -- that treatment is simple: Just eat, write body affirmations, paint your nails, you'll be fine. This starts a whole other inferno of self-hate and shame for the sufferer who feels like, "Why can't I just get better then? Am I just a vain, stubborn idiot?" The only thing that has extinguished all this has been to realize (with the help of Carrie's blog) that this is an illness.

All I can add to this is: amen!

What generated the most discussion on the listserv was the "85% of ideal body weight" criteria for anorexia. Laura Collins pointed out that anything under an individuals ideal body weight was a sign of malnutrition, so it almost seems like the 85% criteria was written by anorexia, for anorexia. Others have pointed out that these criteria leave out people who started restricting at a higher body weight, indicating that they don't have anorexia when all other signs say that they do, indeed, have anorexia. One could say that this is what EDNOS is for, but there are several problems with this. The first is that if they really do have anorexia, numbers on a chart be damned, they should be diagnosed with anorexia. The second has to do with EDNOS and mental health parity. Technically, there's mental health parity in the United States, which means mental illnesses need to be treated on par with physical illnesses (why they're even separated is beyond me, but that's another post). It's a step, and I'm happy it's a step, but let's be honest: everyone knows that mental health care gets the short end of an already very short stick. And in some states, EDNOS is not a parity diagnosis; only anorexia and bulimia are. So these semantics can have huge effects on who gets treatment.

Another issue is that people with eating disorders get very fixated on the 85% "rule." The psychology of EDs works like this: people with lower ideal body weights are somehow "better" and they "deserve" treatment. So if you don't meet that 85% cutoff, many people's thoughts are to lose more weight. I'm not saying we should change the diagnostic criteria to make sufferers happy--this thinking is an issue with ED psychology and not so much the diagnosis. But I'm not so sure what is "magic" about the 85% cutoff. It's not like I hit X pounds and I went from not-anorexic to anorexic, nor did I stop having anorexia once I crept over that 85% mark.

I have almost conflicting feelings on the focus on weight in the ED world. On the one hand, if everyone is weighing me all the freaking time, it's hard to stop focusing on weight. On the other hand, being weighed regularly gives me some comfort because I know I'm not constantly gaining weight. And for someone with a long history of anorexia, tracking weight can be a useful tool. It's not the be all, end all of my treatment and recovery, but if my weight starts slipping, that would be a useful thing to know. Part of the reason I find weight monitoring* helpful is that I'm not necessarily the brightest lightbulb in the box when it comes to recognizing relapse. How can not eating be a problem when it seems like a solution?

I do believe (and evidence suggests) that our bodies gravitate towards our set point weights, but getting there is far from just letting "gravity" do the work. After this past relapse, it took me almost half of my time re-feeding to get the last five pounds on because my metabolism started seriously fighting back. I would have much preferred not to bother with that, but I was lucky to have a team that absolutely insisted. I don't necessarily want people to totally ignore my weight, to just let nature sort itself out. Long-term, ongoing malnutrition wrecks havoc with your body, and that's not something on which I want to take a let's-just-throw-the-dice-and-see-what-happens approach.

That being said, "ideal weights" and "target weights" may not be stagnant, and they may not be one particular number. One treatment center told me my ideal weight down to the half pound, which made me laugh even then. Weight isn't the sole indicator of health. I don't think weight should be ignored, but it's just one factor in an overall picture.

And on that note, I will transition to the last part of my thoughts on the anorexia criteria in DSM-V. The entire DSM was altered slightly to have a dimensional aspect to diagnosis rather than a categorical. Click here for a more in-depth discussion. Take depression. In order to be diagnosed with depression, you have to meet five of nine symptoms. If you don't meet all five, technically, you don't have depression. That's the categorical diagnosis: you have it, or you don't. (Talk about black-or-white thinking!) The problem is that people can suffer from four of the criteria in very severe forms that impact their life. So now the DSM is also looking at severity of symptoms when using the diagnostic criteria so that the hypothetical person in the above example will be diagnosed and treated for depression. Which is good.

As part of this, the draft criteria for anorexia included a "severity" section. You know how severity of anorexia is likely to be calculated? Wait for it...wait for it...BMI. That's right. From the professionals who are constantly saying "it's not about the weight" are the ones telling you that the less you weigh, the sicker you are.

I'm not going to say that health and weight have nothing to do with each other. People with anorexia nervosa and very low body weights are clearly ill. I'm not disputing that. But weight is not the sole indicator of health or severity of anorexia!! There are so many other ways to measure severity, ways that don't collude with the I'm-not-that-sick mentality so common in eating disorders. I have been very, very sick at relatively normal weights, and some of the sickest people I met weren't those with the lowest weights. Anorexia is a mental illness, no? It's not primarily a disorder of low body weight; it's a disorder of self-starvation. Yes, weight loss is part of that, I'm not denying it, but perhaps severity could be measured by things like bradycardia and orthostasis, by body temperature and cyanosis, by energy imbalance and Eating Disorders Inventory scores, by how much of your thinking is dominated by food and weight and how frightened you are of gaining weight. But not weight itself. The severity of binge eating disorder isn't measured by BMI, it's measured by number of binge episodes per week. It can't be that hard to come up with a similar criteria for anorexia...can it?

I am actually shocked that more people haven't noticed and discussed this. It seems like such a huge issue (no pun intended), and it's basically been overlooked.

*Currently, I do weekly weigh-ins and I would imagine these will be spaced out as I continue to do well in recovery.

The draft criteria for eating disorders in the upcoming (and much discussed) revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) have been published this morning. The two most important changes are the listing of Binge Eating Disorder as a stand-alone diagnosis and the removal of the amenorrhea criteria for anorexia nervosa. There were other, more subtle changes that I will discuss in their own blog post a little later.

You can click here for the eating disorders section of the DSM draft criteria.

Here are the diagnosis as listed in the draft version:

Anorexia Nervosa

A. Restriction of food intake relative to caloric requirements leading to the maintenance of a body weight less than a minimally normal weight for age and height (e.g., weight loss leading to maintenance of body weight less than 85% of that expected; or failure to make expected weight gain during period of growth, leading to body weight less than 85% of that expected).

B. Intense fear of gaining weight or becoming fat, even though underweight, or persistent behavior to avoid weight gain, even though underweight.

C. Disturbance in the way in which one's body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight.

Specify current type:

Restricting Type: during the last three months, the person has not engaged in recurrent episodes of binge eating or purging behavior (i.e., self-induced vomiting or the misuse of laxatives, diuretics, or enemas)

Binge-Eating/Purging Type: during the last three months, the person has engaged in recurrent episodes of binge eating or purging behavior (i.e., self-induced vomiting or the misuse of laxatives, diuretics, or enemas)

Bulimia Nervosa

A. Recurrent episodes of binge eating. An episode of binge eating is characterized by both of the following:

(1) Eating, in a discrete period of time (e.g., within any 2-hour period), an amount of food that is definitely larger than most people would eat during a similar period of time and under similar circumstances

(2) A sense of lack of control over eating during the episode (e.g., a feeling that one cannot stop eating or control what or how much one is eating). B. Recurrent inappropriate compensatory behavior in order to prevent weight gain, such as self-induced vomiting; misuse of laxatives, or diuretics.

C. The binge eating and inappropriate compensatory behaviors both occur, on average, at least once a week for 3 months.

D. Self-evaluation is unduly influenced by body shape and weight.

E. The disturbance does not occur exclusively during episodes of anorexia nervosa.

Eating Disorder Not Otherwise Specified

(These aren't actual diagnostic criteria, just a discussion of the issues around EDNOS and how it might change based on other changes in ED diagnostic criteria.)

It is recommended that Binge Eating Disorder, described in this section of DSM-IV, be recognized as an independent disorder in DSM-5. Recommended changes in the criteria for Anorexia Nervosa, Bulimia Nervosa, and for eating and feeding disorders usually beginning in childhood should also reduce the need for Eating Disorder Not Otherwise Specified.

The work group is considering whether it may be useful and appropriate to describe other eating problems (such as purging disorder--recurrent purging in the absence of binge eating, and night eating syndrome) as conditions that may be the focus of clinical attention. Measures of severity would be required, and these conditions might be listed in an Appendix of DSM-5.

If these recommendations are accepted, the examples in Eating Disorder Not Otherwise Specified will be changed accordingly.

Binge Eating Disorder

A. Recurrent episodes of binge eating. An episode of binge eating is characterized by both of the following:

1. eating, in a discrete period of time (e.g., within any 2-hour period), an amount of food that is definitely larger than most people would eat in a similar period of time under similar circumstances

2. a sense of lack of control over eating during the episode (e.g., a feeling that one cannot stop eating or control what or how much one is eating) B. The binge-eating episodes are associated with three (or more) of the following:

1. eating much more rapidly than normal

2. eating until feeling uncomfortably full

3. eating large amounts of food when not feeling physically hungry

4. eating alone because of being embarrassed by how much one is eating

5. feeling disgusted with oneself, depressed, or very guilty after overeatingC. Marked distress regarding binge eating is present.

D. The binge eating occurs, on average, at least once a week for three months.

E. The binge eating is not associated with the recurrent use of inappropriate compensatory behavior (i.e., purging) and does not occur exclusively during the course of bulimia nervosa or anorexia nervosa

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.

We know a lot more about eating disorders than we did ten or twenty years ago. But with that knowledge comes the rather sobering fact that we still don't know a whole lot. At Lobby Day 2008, Dr. Cindy Bulik said that we lacked even basic epidemiology on the prevalence of EDs in the general population. People have extrapolated and guessed, but that's kind of like saying you live in the US somewhere west of NYC and east of LA. It doesn't exclude a whole lot.

Besides the epidemiological data that we lack, there is also the problem of how to define and diagnose eating disorders. The gold standard is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition* which basically describes each "mental disorder" as a syndrome. That is, the DSM doesn't go into detail as to what causes the illness, which is unlike many other medical conditions (i.e., the definition of tuberculosis includes the identification of the causative Mycobacterium tuberculosis), but instead just describes signs and symptoms that can be identified by doctor and/or patient. The Wikipedia entry on "syndrome" says that the word

is most often used to refer to the set of detectable characteristics when the reason that they occur together (the pathophysiology of the syndrome) has not yet been discovered.

In simple parlance, we don't know a whole lot about what causes the disease, but we can identify it. Although we know a lot more about what causes eating disorders, we don't know the exact sequence of events, nor do we know what factors are necessary to result in the development of an eating disorder.

Which is why I think that the recent paper titled "Clarifying criteria for cognitive signs and symptoms for eating disorders in DSM-V" is so important. If we can't find a specific bulls-eye to diagnose an eating disorder, then we can at least make that bulls-eye as small as possible so that people who have eating disorders can receive a proper diagnosis.

The researchers, led by Anne Becker at Harvard, took on some of the most profound and disabling aspects of eating disorders: the underlying cognitions.

The literature supports several reasons that individuals with an eating disorder may not endorse cognitive symptoms, despite their presence. These include limited insight, minimization, or denial, as well as intentional concealment related to perceived stigma, social desirability, or investment in maintaining behavioral symptoms. We also identified reasons that the word "refusal" in AN criterion A may render its application problematic.

In my opinion (and this is getting back to A's excellent comment on yesterday's post), it's the cognitions, not the weight, that ultimately delineates people into having anorexia or not.** Not that the behaviors are irrelevant--far from it. But thoughts and behaviors exist in this enormous feedback loop, and both must be changed for ongoing and lasting recovery.

Even using cognitions to define EDs can be problematic due to the prominence and prevalence of dieting and food phobia in our culture. We need to get better at making these distinctions, since I doubt our obese-o-phobic society is going anywhere.

*This was on my list of recommended books on Amazon the other day, causing great laughter and hilarity on my part.

**I am less familiar with how this might apply to bulimia, and I am also tired so I won't tackle it in this post. But I think the frequency of binge eating and purging is important- one episode is definitely problematic, but how can we say that it's a disorder? Daniel LeGrange's group found an actual clinical difference between adolescents with full-blown BN or sub threshold BN. How significant that is, I don't know.

Diagnosing an eating disorder usually involves a measurement of height and weight, and then some basic questions: how much do you eat? Do you binge? Do you purge? How much you exercise? Do you think you're fat? If you're seeing a therapist, you may have to fill out a questionnaire, like the EAT-26. If you're seeing a doctor who is decent, they may check your bloodwork and if you're really lucky, do an EKG.

The problem is that this doesn't always catch everything. Why? The DSM-IV isn't foolproof. It's more of a description than a diagnosis, made more for people in their late teens and into adulthood than for younger sufferers, and even some older ones. Many young children with EDs may not express a phobia of fatness, and this is causing many GPs to miss the diagnosis. Nor do people from non-Western cultures always express a weight/fat phobia, although this phobia is slowly increasing. Furthermore, the amenorrhea criteria for diagnosing anorexia has become increasingly controversial, and recent research suggests that we scrap the criteria entirely.

Moreso the questions about how much you eat and how you feel about your body may not always elicit the most honest of answers. Many sufferers (myself included) think they eat just freaking fine, dammit even when their calories are less than 1/4 what is recommended for healthy women. And even when sufferers do realize that their eating habits and body weight give them an eating disorder diagnosis, many don't want help or are deeply ashamed of their abnormal behaviors. Eating disorders do not lend themselves well to honesty. A brand new study is looking at what particular feelings and emotions help distinguish between women with EDs and women without them.

So when I see research about diagnostic brain scans for PTSD and depression, I get excited. Although these brain scans are still a long way off from being used in eating disorders, there is an increasing discussion about their potential use in research and diagnosis. These scans can bring a level of objectivity to the diagnosis. They let both treatment providers and sufferers see what's going on. They might relieve the sufferers of the compulsion to lie about ED's torment.

With the growing awareness of PTSD in the military, some psychiatrists are beginning to wonder at how well current criteria for PTSD are capturing the actual cases of PTSD in the military. Do the current standards exclude too many sufferers? Or could they be too inclusive, lumping people with sub-clinical symptoms into a full PTSD diagnosis that becomes a self-fulfilling prophecy?

I wonder the same about eating disorders. So many times, the media speaks of an "epidemic," yet we don't have the cold hard numbers to indicate this. Certainly, EDs are being diagnosed more frequently in younger children, in men, in minorities. But we don't yet know whether they were there to begin with and we just missed them.

There is so much we don't know about eating disorders, and a good place to start would be better, more comprehensive diagnostics.

Perhaps, if the folks at the Great Ormond Street Hospital in London are right. New research, which will be presented at the Institute of Education conference this week, sheds light on the brain changes that accompany anorexia. Rather than a size zero fad or an overcontrolling mother, anorexia may be caused by changes to the brain that occur in the developing fetus.

In an article in the UK's The Guardian titled "Anorexia risk 'could be predicted'," lead researcher Ian Frampton says that

"Our research shows that certain kids' brains develop in such a way that makes them more vulnerable to the more commonly-known risk factors for eating disorders, such as the size-zero debate, media representations of very skinny women and bad parents."

Slight quibble: those are stereotypical risk factors. The first two may cause people to diet, which would then trigger an eating disorder, but in and of themselves, they don't have a whole lot to do with EDs. The last has been thoroughly debunked- bad parents don't help you in life, but they don't cause eating disorders, either.

And these brain changes--whatever they may be--don't make you more vulnerable to "the size zero fad and the cult of the super-thin celebrity," as the author writes. Anorexia is deadly, not a fad a little too far by a bunch of vapid teenage girls. The brain changes make you more likely to develop a serious mental illness that might look like a fad, but let me tell you: it ain't about celebrities.

Frampton and his colleagues conducted in-depth neuropsychological testing on more than 200 people in the UK, America and Norway who suffer from the condition...They found that about 70% of the patients had suffered damage to their neurotransmitters, which help brain cells communicate with each other, had undergone subtle changes in the structure of their brains, or both.

One in every few hundred girls may be affected in this way, according to Frampton, who said the condition was random and not the result of poor maternal diet or environmental factors, such as widespread use of chemicals. Imperfect wiring in the brain's insular cortex that may lead to dyslexia, ADHD or depression in other children produces what he calls "an underlying vulnerability" among some young people that makes them more likely to develop anorexia.

This research is, of course, preliminary, and there are many questions I would like to see answered, such as:

• How do you know these brain changes aren't a result of malnutrition? If the girls being studied are currently in the hospital for AN, they're malnourished, which we know changes the brain. I'm assuming they authors have an answer for this and I am all ears.
• How do you intend to show that these brain changes came first?
  
• Are there other people with these brain changes that don't develop AN? In other words, are these brain changes diagnostic, or just suggestive?
  
• If the process is random, why does AN run in families? Did you look at siblings?

These studies are absolutely important, and I'm glad they're being done, but I'm not sold that this study will "revolutionize" anorexia treatment. Yet.

The authors of the study naturally mention screening and prevention, efforts that are no doubt important. However, dieting is ineffective for everyone, and malnutrition is dangerous for everyone. There should be a zero-tolerance for it across society, not just for those with EDs. The stakes are almost certainly higher for those with the genetic wiring for EDs, but that doesn't mean everyone else has a "get out of jail free" card, either.

Still, the take-home message is this: anorexia is the result of differences in neurobiology and neurochemistry that is triggered by things in the environment.

EDITED: I found another story in the Sydney Herald-Sun that had a few slightly different quotes and seemed to portray the research just a bit better, without some of the dodgy paraphrasing by the writer. See the story here. I'm still waiting for the American newsmedia to weigh in (no pun intended).

I don't have much time right now, but I couldn't let this one pass by without making immediate comment: a new decade-long study has just been released that tracked bulimic symptomatology among adolescent girls of varying racial and socioeconomic groups. And the results blow any notion that eating disorders are a rich, white girl's disease straight out of the water.

In a survey of 2300 girls from around the country, a team of researchers led by USC economist Michelle Goeree and economist John Ham of the University of Maryland, found that

"girls who are African American are 50 percent more likely than girls who are white to be bulimic, the researchers found, and girls from families in the lowest income bracket studied are 153 percent more likely to be bulimic than girls from the highest income bracket."

Furthermore, African American girls measured higher on a clinical index of bulimia severity than their white counterparts. Overall, 2.2% of the girls had clinical bulimia nervosa, equivalent to other population estimates.

Many measures of eating disorders depend on rates of diagnosis; however, given the secretive and shameful elements of eating disorders, combined with mental health stigma and the expense of care, the population of sufferers presenting for treatment is not necessarily the same as the total population of people suffering from bulimia. This research, which surveyed girls annually and asked questions relating to ED symptoms, body image, and depression, paints a much more heterogeneous picture of sufferers than those that appear in the popular media.

"The results illustrate the importance of having objective information on behavior rather than relying solely on data on diagnoses," Ham says.

According to Goeree, past research has over-relied on hospital admission data, creating a "sample selection bias" that overlooks those who exhibit bulimic behavior but do not receive — or have the means to receive — professional help.

"One explanation is straightforward: Girls with an eating disorder who are African American or come from low-income families are much less likely to be diagnosed. Who goes to the hospital? Those who have insurance. Who tends to have insurance? Wealthier, better-educated people," Goeree says, noting that another part of the difference may be due to parents' sensitivity to bulimic behaviors.

The findings also affect educational spending: "What we thought was that bulimia affects high income, high education white women. And, if that's the case, then you should try to tailor educational programs — because education is expensive — to the group that it will help the most," Goeree explains. "Now we're finding that it's really important to reach a completely different group than we thought."

And these results have implications for treatment.

"Based on their findings about the persistence of bulimic behavior and who is afflicted, the researchers argue that bulimia, which is currently classified as a disorder, would perhaps be more accurately described — and treated — as an addiction. As with drug and alcohol addictions, this would mean more federal, state and local treatment programs and fewer out-of-pocket insurance costs."

The summary didn't show what, if any, correlations were found between measures of depression, body image dissatisfaction, and bulimic behaviors, which was about the only thing missing. The main message? EDs don't discriminate.

One of the major diagnostic features of anorexia (and the one that sufferer's tend to obsess over most- I know I did!) is that the person weighs "less than 85% of expected body weight."

I'm sure I'm not the only one that wondered: so what could that possibly mean?

What is "expected body weight"? I would think this would be quite personal. People aren't charts, they aren't all going to fit on some nice little table with nice, neat boxes in which body weight and height are placed. Some people tend toward the lower side of these charts, and others toward the higher end.

Some ED professionals use this "100 lbs for 5 feet, plus 5 lbs for each inch over 5 feet." Let me tell you. I'm 5 foot 5. When I was at 125, my periods were gone and I was plunging into the completely batty zone- and it wasn't even that much under my usual weight. If that's 100%, then what must 85% have looked like?

Utter insanity is what it looked like.

There are also the MetLife Insurance tables, the "what's your BMI?" game, and the pin-the-tail-on-the-donkey approach. I'm not entirely sure how much I'm joking about the last one.

These approaches make a huge difference in both diagnosis and insurance coverage for treatment.

My other question is this: why 85% at all? In young children, this might not even work, since it tends to be lack of weight gain with height increase as opposed to general weight loss. And once you hit 86% in recovery (if you were below 85% to begin with!), are you suddenly not anorexic anymore?

Any sufferer, and any of the people who care about them, know that this is bunk. Your brain is still anorexic even if your body is beginning to heal.

I understand, as an epidemiologist, that you need specific percentages and cutoffs in order to measure the incidence and prevalence of a disease. You do. There's no way around it. Insurance companies need it so they can be miserly and annoying- as well as code for different things, etc. Clinicians like to diagnose with a yes/no, either/or, sick/healthy manner of thinking. Which works with pregnancy, and not necessarily a whole lot else.

But why are we just waiting for someone to lose MORE weight before we try to start giving them a real diagnosis? Or saying they're "better" when they're clearly not at 100% of their normal weight and normal functioning? I do get that there is the category of EDNOS, but it is usually considered to be "sub-clinical" by insurance companies, sufferers, and even professionals.

Things like this--these seemingly piddly crunching of numbers and gauging of math--are important. They can save lives.

This is a question that has always made me wonder: when is it an eating disorder? And when is it an extreme diet? Or a lot of comfort eating?

Is it the person's ability to stop? An article from Australia details the unhealthy lengths women go to in order to lose weight. Diet pills, fasting, vomiting: unhealthy, no doubt. But what makes something an eating disorder? Self-induced vomiting for weight loss seems to be a clear-cut thing. Yet if it's only once--what about then?

A famous Italian chef admits to binge eating disorder. He is quoted in the article as follows:

"I binge-eat like I used to binge drink," Zilli told The Daily Telegraph. "When I'm not in a good place, when I'm a bit stressed and depressed, I eat chocolate and desserts. Everything sweet. We are weird us chefs. That sends me to the unhappy place where the alcohol took me."

But how often does he do this? Is it the equivalent of a post-breakup sob fest on the couch with a few pints of Ben and Jerry's? Or is it something more regular? And how much of a problem, really, is emotional eating?

Do we say it's when the person realizes there's a problem? Because there's such a thing as both denial (when you know you're sick but don't want to admit it) and anosgosnia, which means you literally do not know that you are sick.

Do we say when there are physical complications? Or is that too late? Too broad? Not definitive enough?

I do understand that eating issues can exist on a continuum, but where do we reach the point between "not the greatest habits" and "Houston, we have a problem"?

Can we draw the line? Should we? And if so, where?

Here's a slightly old paper I found on PubMed that really captures some of my thoughts on the usefulness of amenorrhea as a criterion for anorexia.

Towards a physiologically based diagnosis of anorexia nervosa and bulimia nervosa.

Here is the abstract from the article:

Diagnosis of anorexia nervosa (AN) and bulimia nervosa (BN), while including such physiological data as weight and the reproductive status of the individual, are primarily based on questionnaires and interviews that rely on self-report of both body-related concerns and eating-related behaviors. While some key components of eating disorders are psychological and thus introspective in nature, reliance on self-report for the assessment of eating-related behaviors and nutritional status lacks the objectivity that a physiologically based measure could provide. The development of a more physiologically informed diagnosis for AN and BN would provide a more objective means of diagnosing these disorders, provide a sound physiological basis for diagnosing subclinical disorders and could also aid in monitoring the effectiveness of treatments for these disorders. Empirically supported, physiologically based methods for diagnosing AN and BN are reviewed herein as well as promising physiological measures that may potentially be used in the diagnosis of AN and BN.

I don't think any decent physician will discount a person's personal experiences; those do have meaning in treatment. But when you're confused or unaware of what's really going on, it helps to have some objectivity.

This would also show things like the level of starvation and malnutrition, which, to me, play just as much a role in eating disorders as weight and the presence of menses.

One of the big debates for the next edition of the Diagnostic and Statistical Manual (DSM) is the use of amenorrhea as a criterion for anorexia. Some of the issues raised include:

--Girls who haven't reached puberty
--Women in menopause
--Women on oral contraceptives
--Men

Furthermore, even women who meet the weight criteria for anorexia might not lose their periods. This is especially true as women get older. My very well researched slightly random opinion is that menstruation is better established once women hit 20 and older. Which means that it takes more damage to the body before menstruation ceases. There are also plenty of teens who don't lose their periods, and there are plenty of older women who do.

So what are we to make of this? Can amenorrhea be a clinical criterion for anorexia? If it can, should it be?

Researchers at the New York State Psychiatric Institute looked at this issue in recent research published in the International Journal of Eating Disorders. From a clinical standpoint, does amenorrhea really make a difference? They found that women who had lost their periods had a lower lifetime BMI and a lower BMI when admitted to the inpatient unit. However, no other significant differences were found. The researchers concluded:

"These results indicate that amenorrhea does not distinguish between groups on a number of important measures of clinical severity. It may be that amenorrhea reflects weight and nutritional status, rather than providing useful diagnostic information. Future studies are needed to examine the potential prognostic value of menstrual status."
(Emphasis mine)

The bolded sentence leads me to a second study in the Journal of Adolescent Health titled "Irregular menses linked to vomiting in a nonclinical sample." The title basically reflects what they saw: girls who vomited even one to three times per month were 1.5 times more likely to have irregular periods. And this is far from the clinical criteria for bulimia. The risk for irregular menses was 3 times higher for girls who vomited once a week. These findings held true even when underweight and overweight girls were excluded from the sample. The researchers also controlled for "other eating disorder symptoms, weight status, age, race/ethnicity, and school clusters."

Remember: these are not girls with clinical eating disorders. Certainly vomiting for weight control is a HUGE sign for disordered eating. But amenorrhea may be a sign that something is going wrong with your endocrine system.

So perhaps maybe amenorrhea isn't useful as a diagnostic criterion. But it can (and perhaps should) be used as an indicator of issues with physical and mental health.

Here's a question that's near and dear to my heart: how do you define anorexia? There's the DSM-IV criteria which states the individual has to be less than 85% of ideal body weight, and not be menstruating. There's also the loosely used popular criteria of self-starvation. All of which can be true. So how, then, is someone anorexic versus just being a little muddled about how much to eat?

Luckily for us, scientists have been trying to answer those questions. Part of the problem with diagnosing anorexia is that most sufferers deny the presence of a problem. In my case, I didn't really think I was losing too much weight, or if I was, then it wasn't problematic. This all makes a clinical interview with a sufferer rather convoluted to say the least.

Then there's the next question: less than 85% of ideal body weight. It's clear that there is no one "ideal body weight," even when you control for age and height. Think about it: there's over 6 billion people on this earth, and that everyone who is, say, 5'5" like me should weigh precisely 125 pounds is ludicrous! For the vast majority of human history, there haven't even been scales! Yet the species persists.

(Dieters, take note of the above...)

Lastly, there's the need for amenorrhea. This doesn't work with men (obviously, unless the said male also has a functioning uterus, by which send the lad my way so I can write it up in JAMA and get rich!), as well as with young girls and post-menopausal women. However, there are specific hormonal changes that accompany anorexia (such as a decrease in the T3 thyroid hormone) as a side effect of malnutrition. There are also general decreases in sex hormones. This has been shown in men put on a semi-starvation diet- they have a decrease in sex drive and become completely and utterly obsessed with food. Sound familiar? I could go into the chicken and egg debate here, but that's just too much for one post.

There have been clear indications of the genetic links to both anorexia and bulimia, meaning that there's something more than just social pressures going on. There are also numerous structural brain changes that occur in people with anorexia, no doubt related to the malnutrition caused by the disease.

What would I like to see? Standard scientific tests to determine the bio/neurochemical changes that are hallmarks of malnutrition. A 500 pound woman can starve to death. Maybe it will take longer than someone who weighs 150, but it will happen. And it is the effects of malnutrition that need to be reversed, not necessarily weight gain (as would be the case for the starving 500 pound woman). I have had wonky thyroid levels at a weight higher than my usual. Right now, when I am a little shy of my pre-AN weight, my thyroid levels are within normal limits. Why? I'm giving my body the nutrition it needs. Weight be damned. I would also like to see PET scans used for diagnosis, rather than just research. They're expensive, to be sure, but a good diagnosis is worth its weight in gold.

No diagnosis is that easy. Hopefully, more and more people with anorexia will be diagnosed and treated before the disease becomes severe, which could make blood and brain tests less precise. But until we know more accurately what happens to a person suffering from anorexia, it will be hard to create an adequate case definition.