Friday, February 08, 2008

Under-reporting eating disorders?

This study, just out from Rhode Island Hospital and Brown University, is not only interesting, it's important. And timely. And has implications for the way eating disorders are both diagnosed and treated.

Researchers went back through data collected from some 2500 psychiatric patients and looked at the incidence rates of various diagnoses of eating disorders. They found--unsurprising to anyone familiar with eating disorders--that the vast majority of diagnoses were for ED-NOS, or "eating disorders not otherwise specified."

This is a catch-all diagnosis for those who don't meet the strict diagnostic criteria for anorexia or bulimia. The study authors intelligently suggest that the fact that ED-NOS is the most common e.d. diagnosis (at least in their sample)

suggests that there is a problem with the clinical applicability of the diagnostic criteria in the DSM-IV eating disorder category.

Yes! Too true. Why does it matter? Let me tell you a story.

When my daughter became ill, at age 14, our pediatrician diagnosed anorexia. It was clear to all of us that that's what she had. Her weight was down to 75% of what it was supposed to be; she was in ketosis, she was afraid of all food and drink, she'd withdrawn socially--in short, she had a classic case.

Following good medical procedure, the pediatrician referred my daughter to a psychiatrist. Our insurance would cover only a shrink-in-training, a very nice woman without a lot of experience. My daughter spent our first visit, and most subsequent visits, with her head in my lap, sobbing.

I'm not sure which of the diagnostic criteria for anorexia the psychiatrist felt my daughter did not meet:

DSM-IV Criteria for Anorexia Nervosa

1. Refusal to maintain body weight at or above a minimally normal weight for age and height (eg, 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).
2. Intense fear of gaining weight or becoming fat, even though underweight.
3. 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 denial of the seriousness of the current low body weight.
4. In postmenarchal females, amenorrhea ie, the absence of at least three consecutive cycles. (A woman is considered to have amenorrhea if her periods occur only following hormone, eg, estrogen administration.)

My daughter definitely had #1 and #2 (though more on the wording of #1 in another post). She wasn't expressing #3, partly because by then she wasn't expressing much of anything, other than intense anxiety and fear. And she hadn't begun menstrual cycles yet, so #4 wasn't applicable.

In any case, the psychiatric fellow diagnosed her with ED-NOS--and you will be surprised to learn, as I was, that because they're classified as mental health disorders and appear in DSM-IV, only a psychiatrist can truly diagnose an eating disorder. The pediatrician's word counted for nothing.

The diagnosis informed our daughter's entire treatment with the psychiatrist, most of which consisted of useless attempts at anti depressants. The psych was convinced that if we treated the depression, my daughter's eating "issues" would magically improve or even resolve.

Why does it matter? Because we wasted a lot of time, and most of our precious mental health benefits, dicking around with this stuff. If the diagnosis had been anorexia, the psych could have looked up research showing that antidepressants are ineffective during acute malnutrition, and that depression is a symptom of anorexia, not a cause. She probably could have looked this stuff up anyway, but since she was never convinced my daughter had anorexia, I assume she just didn't go there. I don't know for sure what she was thinking, and it stopped mattering after a while.

Back to the study, which hypothesizes that many of the ED-NOS diagnoses are true cases of anorexia or bulimia that for one reason or another don't meet 100% of the clinical criteria. And that psychiatrists should take another look at the criteria and the cases.

I agree. And there's another implication, too: I'm convinced that the low incidence rates are one reason so few research dollars have been spent on anorexia and bulimia. Where are you going to spend your money, on a disease that affects 2 percent of the population or on one that affects 30 percent?*

So three cheers for the Rhode Island researchers, whose work, if somewhat obvious, is long overdue. I look forward to seeing how it might begin to change the clinical picture in eating disorders.

*I refer, somewhat sarcastically, to the proposal that obesity be classified as a psychiatric illness in DSM-V.


Anonymous said...

Lets just hope that this study will spur on more research so people like your daughter can get early help and treatment.

Sometimes it takes a scientific study to point out the nose on the face.

Anonymous said...

I'm a (somewhat) former anorexic (I say somewhat, because I still obsess every day, and in stressful times come to the conclusion that I am not good enough to eat). I was, until very recently, also a psych major.
When I entered the part of my studies that delved into eating disorders, I was dismayed to learn that if I HAD gone to a doctor, I would have been tod that there was nothing wrong with me because I was still classified as overweight. I'm glad I never went, although I still have trouble with ED, because being told that I was fine would have made things so much worse. They would still have told me I was fat, making me go on more "excersize binges" and eat less than I already was!

Rachel said...

When I sought out help for my eating disorder, I was first misdiagnosed with bulimia, and then classified into that all-encompassing category ED-NOS. The psych who misdiagnosed me with bulimia did so after 20 minutes, and he also told me I still had weight to lose. At the time, my ED aligned more closely with that of a purging anorectic. Had the doctor delved deeper, he would have found my binges usually consisted of things like lettuce. Since my goal was to eat nothing, I considered even the smallest morsel of food to be an out-of-control binge.

I did later have a very brief bout with bulimia, which I believe was brought on my malnutrition. It lasted for less than two months and then I resumed the same behaviors as before, only they got much worse. I met all of the criteria for anorexia, except for body weight. However, I had a much higher starting point than most anorexia cases, and lost 60 percent of my body weight in a year.

I'm still angry about the misdiagnosis. Had I had a diagnosis of anorexia, I would have been eligible for greater coverage and treatment plans and my disorder may not have gotten as worse as it did.

Anonymous said...

The idiocy of DSM diagnostic criteria aside, that psychiatrist was an idiot. Anyone who has ever worked with EDs should know that someone at 75% of ideal body weight who is starving him/herself is freaking anorexic!!! And anyone who has worked with EDs should know that you're consigning the patient to insurance purgatory with an EDNOS diagnosis.

I'm another EDNOS...though with a history of bulimia. Ironically, when I was bingeing & purging a couple times a week and met the BN diagnosis, the insurance company happily paid for my nutritionist; when I switched from that cycle over to a restricting/purging cycle and lost 20% of my body weight in 3 months, I was EDNOS--because I'd been overweight at the outset. I was objectively much sicker at that point--but no longer met the criteria under which my insurance felt I needed significant treatment because I didn't fit into one of the two utterly ridiculous categories for "serious" eating disorders.

I was in an outpatient ED program for a while; a good number of us were there to stay out of the hospital, so clearly it was a fairly sick bunch. I would venture that about 80% of us were EDNOS--purgers who didn't binge, long time restrictors whose metabolisms were shot to hell, overexercisers, etc. I'm thrilled about this study--finally, concrete proof of something all of us knew all along!

Can we have the research money now, please? Please???

Harriet said...

Yeah. YEAH.

This all goes to show why it's the behavior that's important, not the weight.

In our culture you can be sick as a dog, but so long as you weight is low to normal you're OK.

I haven't looked in detail at how insurance companies specifically treat a diagnosis of ED-NOS differently from AN or BN. Anyone out there know the answer?

Anonymous said...

I think it's important to change the way that ED-NOS is treated, but not only because people who are "really" anorexics or bulimics are getting misdiagnosed. Rather, because people with ED-NOS -- whether they've got classically anorexic behaviors without the low body weight, classically anorexic behaviors with an idiot therapist, or behaviors that aren't classically anorexic or bulimic -- are getting sidelined.

I refer to my ED as bulimia because people understand that, but if I had had the strength or the support network to get treatment, I certainly wouldn't have been diagnosed bulimic because my binges weren't big enough -- I often just threw up regular meals that felt overindulgent. I don't know what would have happened if I'd sought treatment, but I can guess that a) I would have gotten over it faster and b) I would have paid out of my own pocket. ED-NOS wouldn't have been a misdiagnosis for me; as someone who threw up normal amounts of food, I was a classic case. But it would have complicated my treatment anyway.

Anonymous said...

I also hate how if you have not lost the required 15% you do not qualify for the diagnosis.

Am I any less AN at 86% of my IBW than 84%? How was this magic barrier set?

Also, where does that leave a recovering AN who is weight restored. Technically we are ED NOS but our thinking and perhaps behaviours may be very AN.

This is a HUGE problem with the DSM criteria.


Anniee451 said...

Harriet, I read Kitty's story last night and it broke my heart - only realized today that that was you!! It hits so close to home because my daughter has been starving herself for months now, and only when she's home with us will she eat. (She's in the double zero size now.) So thank you for all this information; I'm going to try and put it all to good use. It's sad, because the doctor would probably tell her she's at a perfect weight despite that she's got four painful, rotten teeth and she's pale as a ghost, and so tired. Anyway, I'm going to be reading more. And making some milkshakes and other things this very night.

Harriet said...

Annie, if you email me off list I can offer you some information that might help. Hnbrown at tds dot net. Also, you might take a look at I'm sorry to hear about your daughter.

A, I know what you mean. Here's the thing the medical profession doesn't seem to get: Once you've been down the rabbit hole of anorexia, it takes a hell of a lot to get back out again. For mental recovery you've got to hit *your* target weight, which is often around BMI 22-24, and stay there for 6-12 months. For some people, that's when mental recovery *begins.* You can be at a weight that would be just fine for someone who never had anorexia and still be quite sick. I know that and you know that. But docs? Don't seem to know.

fillyjonk, I'm beginning to think we should just ban the ED-NOS thing altogether. How does it help anyone? Sounds to me like you were bulimic no matter what DMS-IV says.

Anonymous said...

Amen. I'm another EDNOS (recovering, thank goodness). Back when I was behaviorally anorexic, I never would have been diagnosed as such because I was still a "normal" body weight (although 30 lbs below MY normal). Most recently (the past ten years) I've been in fillyjonk's position- Not REALLY bulimic because I threw up normal amounts of food. The diagnostic criteria are waaay too strict, in my opinion.

Fiona Marcella said...

Surely what we all need is a system and professionals within it which treats the individual not as a numbered diagnosis.

My daughter considers herself ED-NOS. She "qualified" as anorexic on diagnosis, which got her the "evidence based" treatment of choice (and yes, I really do think FBT should be the initial approach of choice for adolescents with any eating disorder) but it didn't suit her individual situation.

Now having also tried specialist institutional IP care she personally hopes for a system in which people can be seen by generalist clinicians with a wide knowledge base as a WHOLE rather than by ED specialists (against whom she is prejudiced but not as much so as her father or family doctor) for your ED, by OCD specialists for your OCD...

Anniee451 said...

marcella, what's FBT? Not to sound ignorant, but since my daughter is borderline anorexic I'd like to get the acronyms down here.

Anonymous said...

FBT is Family-Based Treatment, an evidence based treatment for eating disorders. Read about it at

wally said...

I don't know a lot about the ED-NOS diagnosis specifically but I do know that because I didn't meet enough criteria for an eating disorder (I was dramatically undereating, overexercising and mostly purging using laxatives--plus, not underweight) my doctor refused to diagnose me as such and I could not see any ED specialists (or a nutritionist, etc.) under my insurance. I eventually saw a sports medicine doctor a few months later. He was alarmed by my body fat measurement and gave me a diagnosis and a referral.

Unfortunately I've heard this story a lot, though I think your daughter's is the most egregious I've heard.

Unknown said...

EDNOS is got to go. Either have one big category for all eating disorders, or break it down further. As it is, it is useless.

The message to patients and their families is incoherent and, too often, a reason to act with less urgency.

Anonymous said...

It also makes sufferers feel like they do not have an ED after they reach a restored weight.

I have a BMI of 20+ -- I started out with a BMI of 14.8 -- Goodness knows, I am not cured, but I no longer have AN. I guess I am ED NOS. . .But what the HELL is that supposed to mean? Am I sick? Do I still require care?


Anonymous said...

Parents and pediatricians ought to be aware of recommendations from the American Academy of Pediatrics. They say "INTERVENTION SHOULD OCCUR AT THE FIRST SIGNS AND SYMPTOMS OF DISORDERED EATING." Perhaps the ED-NOS designation is useful if it's considered an early identification tool, rather than an excuse to "wait and see."

From the AAP's Children and Adolescents with Eating Disorders: The State of the Art":

"There is strong evidence that the longer the duration of illness, the harder it is to achieve recovery. Eating disorders need to be diagnosed early in the disease process in order for treatment to be as successful as possible. By the time a formal diagnosis of an eating disorder is made, the patient is already suffering from serious biopsychosocial problems. Intervention should occur at the first signs and symptoms of disordered eating. Awareness needs to increase at many levels. Early recognition of the disease process by parents, friends, educators, and coaches can facilitate evaluation by the health care system. Practitioners need to be sensitized to the possibility of an eating disorder developing even at a young age, and need better training to improve their recognition of the early stages of the disease process. Screening about body image, dietary changes and dieting habits, and assessment of growth patterns should occur yearly."

Harriet said...

Thanks, Jane, for the comment. Now, if only pediatricians and other docs would actually follow these recommendations . . .

A, I think you still require care, and will until you are fully recovered. Right now you're in the process. Is that a good way to look at it? And I think you're making progress all the time.

Dreaming again said...

my dx is ED-NOS .. I would not qualify for help insurance wise without that dianosis.

I am obviously not anorexic...because of my weight ..however, my behaviors, thought patterns and rituals are that of a purging anorexic.

I have never had a full bulimic binge ...

without ED-NOS diagnosis ... I'd be out on a limb without treatment for what has almost killed me multiple times.

Harriet said...

what I meant was that ED-NOS should be replaced by diagnoses that are taken more seriously by the medical profession. not that we should just get rid of ED-NOS arbitrarily.

i believe you deserve more treatment, and help, and compassion, not less