The eating disorder world's dirty little secret

It's something you don't see on all of those shiny websites from spa-like treatment centers. Nor, really, do you see it on more academic websites about eating disorders. To many ED novices, it's probably almost completely invisible. But I've been around the block a few times--more than a few times. This little secret has become glaringly obvious to me:

We have absolutely no idea how to treat an eating disorder.

Okay, true: there is research. There are studies and meta-analyses and case reports and all of that. It's not that the studies aren't useful, but I know very few therapists who really use these as the basis for their treatment. I have heard of and have personally met many treatment providers who say they use the acronymmed treatment in question (CBT, DBT, ACT, FBT...WTF?!?), but that's not exactly what the patient is getting. I don't think the therapist is lying, I think they don't have enough training or they pick and choose which parts of the therapy to use.

A study published earlier this year in the Journal of Consulting and Clinical Psychology noted the following:

Clinicians commonly "drift" away from using proven therapeutic techniques...but [our findings] indicate the need for stronger training and closer supervision if clinicians are to give patients the best chance of recovery. They demonstrate that clinicians' use of the label CBT is not a reliable indicator of the therapy that is being offered.

That's even assuming a therapist actually says they use a particular treatment approach. Many times, a therapist will list that they use any (or all!) of the following: psychodynamic, feminist-relational, cognitive-behavioral, dialectical-behavioral, interperonal, equine, animal-assisted, yoga, past life regression, and a whole host of other things that I can't remember. Maybe a Magic 8 Ball or something...

Most of the time, the therapist simply picks and chooses what they "think" will work, which ends up being something like Dr. Lastname Therapy (DLT, if you need another acronym to add to your collection). As the keynote speaker at this year's International Conference on Eating Disorders pointed out, all humans are subject to errors in evaluating such things without rigorous clinical data, research, and (hopefully) a control group.

Except that most treatment-naive ED sufferers and their families don't know this. They don't know that there is zero regulation of the term "eating disorder expert." They don't know that the $1000/day treatment facility for which they've mortgaged their house a second, then a third, time does a crap job of collecting data to show that what they do actually works. Instead, they're printing glossy brochures and buying new Magic Ponies and hiring "Marketing Representatives."

I'm not dumb- I get that in the US, you need to advertise. You need to market yourself. I'm not expecting that a facility don't do that. You can deliver the best care possible, but if no one knows about it, what good will it do? Thus far, however, no one has shown in a large-scale study that residential ED treatment is really effective.

For many patients who use residential care, they've exhausted other options. Insurance kicks them out of the hospital once their blood pressure and heart rate are out of the basement. Nasogastric tubes are denied on the grounds that nutrition isn't "medically necessary" to the treatment of anorexia. {Not making that last one up...I wish I were...}They don't have family or social support to engage in the hard work of recovery. I'm not saying that residential treatment doesn't have a place in treating an eating disorder or that it's never helpful. What I want to know is whether it's helpful more often than not. For those whom it is helpful, I'd like to know who they are and why. What do they benefit from? Can we do it better? Change it to help those who weren't otherwise helped?

Again, treatment-naive people don't know this. We're so used to clinical trials in other areas of medicine that we sort of assume the eating disorder world is like that, too. And it's a brutal wake-up call when they figure out that's not how it works. 

The research literature might say that FBT is the "gold standard" for the treatment of adolescent anorexia*, but if you poll 100 therapists, you could probably count on one hand the number that use FBT as a firstline treatment for adolescent AN. Even if we take FBT out of the picture, things still look fairly grim. Anorexia has no real evidence-based treatments besides FBT, and bulimia has mainly CBT and interpersonal therapy (IPT). For the delivery of CBT, see the above study.

What we need, in my opinion, is a consensus not just on how to treat eating disorders, but what causes them. I don't mean that we create a generation of cookie-cutter therapists and therapies. I don't mean that we use just one therapy or assume that eating disorders are caused by just one thing. I don't mean we all just hold hands, sit around a fire, roast marshmallows, and sing Kum-by-ya. Disagreements are necessary to move the field forward. But when you get down to it, there is very little on which the eating disorder field agrees. At first, this made me sad. Now? It makes me really scared.

This consensus shouldn't be the final word. After all, as Victor Hugo said, "Science has the first word on everything and the last word on nothing." Our ideas about what eating disorders are and how we treat them will, of necessity, change as we learn more. That's not a weakness, that's a strength.

Even if I can't corral people in trying to reach a practical (ie, one that treatment providers in everyday practice actually use) consensus, I hope to make more people aware of the fact that there isn't a consensus. There's a massive divide among ED professionals, and it's not getting any narrower. 

I truly believe that knowledge is power. Knowing that the ED world can't even agree on what causes an eating disorder, let alone how to treat it, can be powerful. It can turn on your critical thinking skills. It can make you start to ask the right questions. Until we do, this lack of even general agreement on eating disorders will remain the ED world's dirty little secret.

*By gold standard, I don't mean that FBT should be shoved down people's throats, or that it will work for everyone, or that it's easy and every family can do it, that every family should do it, and that people who it doesn't work for are just screwed. What I mean is that it's the form of treatment with the most evidence to support its use.

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Jess said...

An explanation for why there is no "gold standard" in how to treat eating disorders? Because no two people are alike, nor are their eating disorders, and different people respond different ways to different treatments. One bulimic may improve greatly with some prozac and a bit of therapy, while another could have tried multiple drugs, been in and out of inpatient, residential, and outpatient programs and still not have maintained some semblance of recovery.

ED's are so complex in their etiology, differing from patient to patient, that it's not realistic to expect that there be one proven way to treat them, other than treating the individual, rather than the label of their eating disorder. Individualized treatment, which is one of the many key components to treatment facilities, seems to be the one thing that is agreed upon, and for good reason.

hm said...

GREAT post, Carrie. Well written, and thought-provoking. The only thing we know for certain as an absolute necessity is... FOOD. Even then, what do you go by to "prescribe" it? BMI? (Yay! Acronym!) Standardized weight charts? Nutritional pyramid? Do you... "eye" the person and see if you THINK they need more? Do you somehow interpret their mental capacity and base your prescriptions on that? (But what if they're destined to be obsessive/rigid/etc no matter HOW much they eat and weigh?) Blah. There's just no easy answer. Maybe someday... if nothing else, like you say, just alerting people to how difficult it is to treat and recover... that's something.

lisa said...

Carrie, this may be the insight written about eating disorder treatment community. It has been blatingly obvious to me since as we tried to navigate treatment for our daughter. Your point do well taken that just because they use the language jargon of treatment modalities doesn't mean they use them as they were designed. Real practical testing environment with decertification every 3 years might be a way to keep clinicians sharp dirt of like CPR and advanced life support courses or also in my field, critical care certification and recertigication because treatment modalities change evolve do should the provIders.

po said...

I have been thinking about this even though I have never experienced eating disorder treatment, because I was interested in pursuing a career in such treatment. I feel so discouraged though because in most countries you need to do a Masters or a PhD, which means you need to spend maybe 8 years perfecting your knowledge of ... research methods. I am a scientist and I know about research, and knowing about research will do nothing for your ability to treat an eating disorder patient. What you need is intensive practical training in those treatments you mention, not learning how to conduct and interpret a brilliant experiment. Obviously those experiments need to be done, but they should be done by scientists or research psychologists, not people who want to treat mentally ill people. I'm all for a Masters that has a large practical base, but a PhD seems overkill in any way imaginable. I assume people see the Dr and trust that they know how to treat people, but all they know how to do is analyse data!

Laura said...

I think it would not bode well for ED patients if their therapists just picked a "researched method" (ignoring the fact that these studies have small #s of participants and their participants only represent a fraction of cases - most are not culturally diverse and most do not have EDNOS, which is the most common ED) and used that research method "by the book."

Laura said...

Also, it would be basicaly impossible to study the effectiveness or not of residential treatment for two main reasons: 1) length of stay often depends on insurance and not actual "readiness" to discharge; 2) all residential places are unique so you really can't compare one to the other.

Carrie Arnold said...

I'm not saying that we develop cookie cutter treatments or that every therapist use the same treatment on everyone. But we don't have a systematic way of evaluating what works and for whom. There's no coherent way for determining why you give one patient one treatment, and a different one to another patient.

I do think clinical psychologists need more focus on training and practice than actual data collection and interpretation. Evidence-based treatment was meant to be used as a blueprint, as a sort of philosophical guidelines. Good clinicians can start with the blueprint and adapt it to patient needs while staying true to the actual treatment.

Jen said...

Carrie, to underscore the importance of what you wrote, here's a quote from the NEDA Conference in NYC of 2 (or was it 3?) years ago:
"The current advocacy efforts in the United States occur in an almost complete vacuum of data about the health services utilization of individuals who experience an eating disorder."

-- quote provided by Dr. Russell Marx and attributed to a document by Streigel-Moore

The field needs someone or some foundation with very, very deep pockets to underwrite a data collection study based on data that is collected in the same way using the same language (questions/format as neutral as possible) to obtain a broader sense of what seems to work as well as an analysis of what "seems" to work post-discharge (which comes way too soon in my opinion). Note the use of the word "seems".

Data collection _is_ and continues to be important. The pool of data about the success of FBT, for example, needs to become deeper and broader. It's too limited right now IMHO. Evidence-based (the data) treatment must gain strength, too, for you and others to persuade practitioners to change their behavior.

As well, the evidence needs to be disseminated broadly, somehow, because as noted by Dr. Insel at the FEAST conference, it can take years for this new information to become part of a psychologist's practice otherwise (unless, as he proposed, one would need to reapply to be licensed, providing evidence of their continuing education re new information). Circular? Yes.

In the meantime, kudos to you for writing this post and for all of those researchers in the field who continue to study the disease itself.

As to the facilities themselves, as I noted in a comment on another blog, many need to stop giving lip service to family involvement and truly follow the model developed by Dr. Kaye et al in the one-week UCSD program (how I wish it could be longer! and incorporated everywhere) to involve the family so that the family or other supportive structure becomes an organism for healing once the person gets on his/her path to recovery.

And then, as has been said, everyone is different.....

Jen said...

PS Maybe we need to quit using the expression "treat an eating disorder" because the expression does not reflect the probable enormous array and combination of disorders of the brain function that lead to an eating disorder. (?)
I am led to post this because I've just finished reading a fascinating book on Borderline Personality Disorder that emphasizes the perspectives of psychiatry to be: (from page 40 of Borderline Personality Disorder-New Reasons for Hope by Mondimore and Kelly, Johns Hopkins Press, 2011)
"the disease perspective - what the patient has
the dimensional perspective - who the patient is
the behavioral perspective - what the patient does
the life story perspective - what the patient encounters"

Cara said...

The problem is that what causes eating disorders is just as diverse as eating disorders themselves. Eating disorders may be a primary (basal) diagnosis, a secondary diagnosis (as mine is considered to be), or even tertiary or maybe even below that. And we can't even agree on how to treat EDs that we believe are a primary diagnosis... let alone how to treat eating disorders that have something else below them that the sufferer is trying to get rid of or cover up (such as bipolar disorder, BPD, or PTSD). The etiology of eating disorders is INCREDIBLY diverse. I think this is part of the reason why there is so much diversity in their treatment as well.

Tetyana Pekar said...

I disagree with your statement that we need to know the causes of an eating disorder to know how to treat it. It is just not true. Knowledge is power, and basic science research in EDs is quite informative in providing hints as to the genetic and neurobiological underpinnings of EDs. I think that can guide our understanding and inform us about possible treatments.

I agree with you about the problem of charging money for unproven things (the same is true for a lot of things: homeopathy, acupuncture, reflexology, chiropractic, etc.. ).

My thoughts on treatment? I think people need to move away from the idea that you will be free of ED thoughts and urges. May be true for some, may not be true for others. I think useful treatments are those that teach you how to manage life with those thoughts and desires, and how to ignore them, or tolerate uncomfortable situations. I guess, what I'm saying is, I think harm reduction goes a long way. But that's just me. I'm sure FBT works for a lot, it never would work for me.

I think, instead of trying to find a treatment that works for "anorexics" and "bulimics", as if they are separate disorders, we should try to delineate which types of treatments are more likely to work for what sub-populations. binge/purging types, restricting types, but also: males, trans folk, racial/ethnic minorities.

We desperately need early intervention. I personally thank Sheena's Place, for doing that in my life. It was my idea to go - in fact, I had to keep it a secret from my family for a long time, but it was a weekly reminder of what I will lose if I engage in symptoms. Early on, I had a lot of dreams and passions, and I saw that they would be lost if I continued to engage in symptoms. That helped and it still helps. I'm not symptom-free, heck, I still fit the DSM-IV diagnosis 80% of the year, for AN or BN, but whenever symptoms start getting really bad, I utilize all of my resources and remind myself, CONSTANTLY, what I'll lose to my ED. I think having dreams, goals, desires, loves, passions, is crucial for recovery or symptom management.

You have to realize what you'll lose in life to an ED, and you have to be willing to fight against that. I think for that to be an important aspect of treatment, EDs have to be caught early on. Because it is much more difficult to do so, after years of inpatient and residential, of being sick, far behind in studies and schooling: when your life is just your treatment team and your ED. Then, one feels, they have nothing to recover for. They recover, then what? What do they know BUT the ED? Scary stuff. I think earlier on in the course of an ED, when not too much is lost and you are not far behind, it is easier.

Why are they hard to treat? Well, it is hard to treat an egosyntonic disorder. Very, very, hard.

That's just my two cents.

Tetyana Pekar said...

Forgot to add, I think the problem with a lot of inpatient and residential treatments is that they don't teach you how to live in the real world. This is why I was always adamant about recovering without inpatient/residential.

That's not to say they aren't useful for symptom stabilization or for severe cases, or hell, just for those who want to do it and think they'll benefit. Of course, they have a place. Perhaps a starting point for some, but, more important is symptom management when you are not being watched 100% of the time.

Laura said...

Carrie, true - I agree with what you said; I think we're actually saying the same thing.

Angela E. Gambrel said...

It's funny, I was just having this conversation with someone today. I have a friend, an incredibly bright and engaging young lady, who has had the following treatment: 1. Remuda (her parents put a second mortgage on their house to pay for it. 2. Renfrew. 3. the River Centre Clinic in Ohio (a PHP program that provides housing. 4. Remuda again (this time insurance paid for it; go figure.) and 5. both outpatient therapy and hospitalization. and now, 6. she's heading for either Monte Nido or CFC. I've racked my brain trying to figure out how to help her, taking into account I was able to get better until I was *willing* to get better. I simply don't understand. Not to be flip, but I think what should be used is whatever works. CBT, DBT, the end, I think it has to do with the real work the patient and clinician(s) do, and of course that starts with food (either refeeding, or working with someone to curtail the p/b cycles.) I also am coming to believe that it doesn't matter what causes an ED; what's important is working on solutions.

I must have read everything I could get my hands on about EDs, both for my personal reading and my research for my thesis, and I still could not tell you what type of treatment would work for everyone. That's because I feel that EDs and the people who get these illnesses are individuals. I used to be a social worker, and I worked with people who had severe mental illnesses (schizophrenia, bipolar disorder, etc.) Each person responded differently to medicine, treatment, therapy, etc. We often would rack our brains trying to figure out why this person who had schizophrenia did so well, while this other person had to be hospitalized constantly. I suppose what I'm trying to say is I don't believe there will ever be *one* across-the-board treatment for EDs.

Great post, Carrie!

Angela E. Gambrel said...

I was *not* able to get better..... Typo! (I wish I could edit comments sometimes!)

Tetyana Pekar said...

Angela, I completely agree.

Abby said...

I agree with Angela completely. It's why some people can recover with outpatient treatment while some can spend a million dollars on the "best" treatment and never make progress. There's no "cure," as one might use for something such as cancer or mono or the like. It's cerebral and not always physical (while of course, the physical is a HUGE component, you get my point.)

For me, I know that I KNOW what I need to do. It's a matter of doing it, and I feel like inpatient would be helpful in that it's an escape from reality and having to make the healthy decision is taken away from me--it's not an option not to. I did great in inpatient with no real issues (before insurance kicked me out.) But once you go home, you're back to being fairly responsible for your own choices. It's making the choice to WANT to get better. Even though I do, it's so hard to let go of the clutch that you're in.

That said, I wish there was a universal way to go. I wish I could take a pill or check in somewhere for two weeks and come out on top. But it's a shit ton of work and you have to want something more than the disorder itself. That's what's so hard to rationalize, and that's why one "set" treatment won't ever exist.

Great post and discussion. Sorry for the ramble ;)

Carrie Arnold said...

I agree that there won't ever (and shouldn't) be one set treatment for an eating disorder. I think we need options, and those are things we really don't have.

I think it's sad that our system is predicated on making people want to get better as a prerequisite of recovery. For me, wanting to get better didn't happen until I had been dragged into recovery. I was lucky in that I had a support system who was willing to put me in a corner and then drag me there. I needed a lot of structure and support for much longer periods of time than would have been possible in IP/residential. Besides not really teaching you real-life skills, I know that I needed to be watched for every meal and snack for several years before I could reliably eat them on my own. Not everyone needs that kind of support--I've said before that I'm an extraordinarily slow learner--but more people do than we're aware of. It's why so many people I know do really well in treatment and then relapse as soon as they leave. It's not that they don't want to get better or even aren't trying. It's that they NEED that level of support for a long time, and that's not something any health system or insurance company is going to pay for.

Abby said...

I agree completely. Even though I sugar coat things sometimes, I know that I am trying and do want to get better, but that an intensive level of support is probably the only thing that will ever get me there--that accountability that won't let me skip a snack or sneak in another workout.

It's never a matter of what I want, but a matter of wanting it more than giving into those urges. I want to believe I can do it on my own, but having been exposed to (a measly two weeks) of IP a few years ago, I realize what it will really take. Thanks again for this discussion. I'll shut up now ;)

Tetyana Pekar said...

Carrie, I completely agree with you on the need for an on-going support system. I've found that for me, group therapy and psychodynamic therapy have been very helpful. Would they have been enough? No. Would a year, or two of it, help? Probably not. I have an amazing psychiatrist who I've been seeing for over 6 years now (mostly on, sometimes off) and used to go for 3-4 years, very regularly, to a support group. That constant reminder is really helpful. The accountability is hugely important! In fact, the most helpful thing I've found, and my most symptom-free time was when I kept a "recovery check-list" that I showed/went over with my doc. It was my idea, I made the list and the content, but it was so helpful, I couldn't believe it!

I'm terribly lucky, I suppose, that I have never had to pay a drop (except for taxes my parents pay) for healthcare. My psychiatrist is 100% covered by Ontario's health insurance, as have all of my previous outpatient treatment and tests. If this wasn't this way.. and places like Sheena's Place weren't in place, well, I wouldn't be in the place I am now.

Support and accountability are SO huge. I think residential/inpatient is helpful as a starting point or symptom management, but long-term, everyone needs a support-system to recover. I guess for some, that comes in the form of family-based therapy. That's not possible in my situation, but I utilized the support of my friends, and now my boyfriend, to the maximum.

Anonymous said...

Someone mentioned that you cannot do any studies into the long term outcome of residental treatment.
Such studies already though do exist.

Long-term outcome of residential treatment for anorexia nervosa and bulimia nervosa.

Treatment results of anorexia nervosa and bulimia nervosa in a residential treatment program.

There is pretty much studies for all different types of treatment out there.

Abby said...

Tetyana, I would like to add that seven years ago I spent 14 days in a residential program and had to pay $18,000 out of pocket even though I was severely medically compromised. THAT is why more people don't seek treatment, in my opinion. It's ridiculous.

Jenn @ Juggling Life said...

"Treatment-naive" is an excellent way to put it. My daughter is in the amazing UCSD Eating Disorder Treatment program--she's been on partial hospitalization for almost three months. We were so blessed to have a very knowledgeable pediatrician and wonderful insurance, but some of the horror stories of what other parents and patient have had to navigate are heartwrenching.

For our daughter, FBT--with components of CBT and DBT and personal therapy--seems to be working. It will be years, if ever, before I rest easy though.

Laura (Collins) Lyster-Mensh said...

This is Gold Standard Blogging, Carrie.

Eating disorders are not individual to each patient: each patient is an individual. Let's not confuse that. All diseases and disorders present differently in each person but the whole power of a diagnosis is using the data we have about that phenomenon to help guide how we help the patient.

We don't treat diabetes as if each patient needs a unique diagnosis and treatment plan. We don't throw up our hands and say we can't make decisions about treatment of cancer because each case is different.

I'm sorry, but I'm tired of the assertion that nothing can be known with these disorders. It's a refuge for poor treatment and hopelessness.

Carrie, you've exposed difficult truths here - important ones. THANK YOU!

Susan Zernik said...

Thank you for writing this post. Treating an ED is definitely an individual journey. My daughter not only had an eating disorder but also a preexisting digestive disorder. This is why the cookie cutter treatment she got at Sheppard-Pratt and Dominion Hospital did not work. It was until she was admitted to Chldren's National Medical Center and was under the care of Dr. Tomas Silber that she then got better. He believe that the nasogastric tube should be used initially inconjunction with food to renourish the child. My child could not hande the massive amounts of food introduced at the other centers. Dr. Silber is truly an angel; he saved my daughter's life and brought her back to us. He will be forever in our debt.

Kevin said...

I have seen many people around me facing disorders especially eating disorder and they visited eating disorder treatment center and when they are back after their therapy they are totally fine and had overcomes their eating fears and disorders.

cdlovespink said...

I agree

help said...

can anyone compare monte nido to UCSD or erc?

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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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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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