Why are you so ANGRY?

I'm not infrequently asked why I am "so" angry. It's the wrong question.

Why AREN'T YOU angry?

Shouldn't we ALL be angry?

That eating disorders are, in most situations, under-diagnosed, under-treated, poorly funded, misunderstood , trivialized, sensationalized, exploited for causes and money, and stigmatized: this doesn't make you angry? Spitting mad? Rending your hair and standing on the street with a sandwich board? How do you CONTAIN your anger and where do you channel it? How do you keep anger from becoming bitterness? I know what I'm doing about mine.

How about that even in the ED specialist world they can't agree to a single principle or organize to hold their fellow experts accountable? That dissent in the field is considered more dangerous than poor practice? That sham treatments and evidence-based treatments are indistinguishable to the public, the media, and funding agencies? Not even that evidence, where it exists, can be dismissed without penalty by law or certification or even conscience?

So YOU are not doing these things? Thank you! And things are better than they were? I agree.

They still suck, however. Anger is appropriate. Rage is natural. There is SO MUCH TO DO and it isn't going to happen by butterfly and Kumbaya alone. It is going to take some anger, some motivation, some confrontation. People will have to be challenged. Standards will have to be created. Offense will be taken. Heads will roll.

"Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean."
Maya Angelou

In fact, it's really our responsibility to be angry. On behalf of those families who are just about to find out how hard it is to get good information and good treatment. On behalf of the young people who trust their parents and the adults in their lives to recognize and intervene when they are in danger but will be disappointed. On behalf of the mothers and fathers who will only discover after they've put their trust in a succession of inadequate or even harmful solutions that there were any alternatives.

On behalf of our recovered children and friends whose own precious children will be at risk.

If my "anger" troubles you, I have to ask you: where's yours?


  1. Laura, I've had and still continue to have struggles with this question, too. I agree that it's more than appropriate to be angry about the state of treatment and understanding and..... etc. .... about eating disorders.

    What I have learned and continue to learn, though, is that there are ways to express that anger that are productive and ways that aren't just as there are ways to ask questions informationally versus ways to ask questions relationally.

    What is the difference? I am still learning that, too. In fact, I recently stumbled big time on this one. Basically, if I understand this piece of communication theory correctly, if I ask in an informational tone meaning I am being inquisitive, then I can be perceived as being judgmental. If I ask in a relational tone I am still looking for an answer but I am putting the question into words that are perceived/received as developing a collaborative effort.

    Sometimes face to face discussion in these situations works a lot better than in words on paper, e.g. in an email or in a post, too.

    For me, getting to that place of relational communication when someone's life is literally on the line is really, really difficult. But, it's a work in progress.

  2. Agreed, Jennifer. I struggle with the need to focus on effectiveness, to avoid making it personal, and with the unfairness of being seen as angry NO MATTER WHAT I DO. Even when taking a relational approach.

    And yes, it is so important to discuss things in person face to face.

    And this: to have the humility to be vulnerable. To not have to be right, to listen, and to change as I learn.

    Most of all I wish there was less need to have to question and ask for change. I'd like so much of this change to have already come!!!

  3. Laura,
    I once challenged an eating disorder professional who insists that individual talk therapy is the best way to treat anorexia nervosa in adolescent patients. I showed her the experimental data demonstrating with a high degree of reliability that after two years, we can expect about half of all patients to be fully recovered, and within five years about 90%, when FBT is used. By contrast, individual talk therapy typically has resulted in a recovery rate of about 23% within two years and 50% in five years. I presented the data calmly and objectively. Her only response was to ask me why I'm so angry.

  4. I've had the same interaction over and over.

  5. Me too. Me too. Furiously angry and fed up to the back teeth with it being turned on me, as my problem.

    My problem is gathering enough support for some kind of action without being seen as a shrill harpy, refrigerator, slightly demonic and completely mad mother who is responsible for her child's eating disorder and needs to find someone else to blame.

    I wish I could get face to face with anyone who has the power to change things. Or find someone who would take any kind of responsibility. Who is going to be brave enough to step up to the plate apart from us parent activists? Because as much as we campaign and write and "activate", we are talking to the hand because the face ain't listening.

    I know you think we shouldn't make this into a them and us situation BUT I begin to feel more and more that clinicians are either smug, self-satisfied and NOT INTERESTED or are stuck so far up in their ivory towers that they can't hear us. This makes it very difficult to not have a them and us situation because, however polite and nice we are, they just can't seem to take their earplugs out.

    And if anyone else tells me to be patient...........


    THAT is the absolute worst response ever. I hate it, and I hear it often. I reframe it thusly:

    "You are right but there isn't much to be done and it will happen eventually if you don't upset people and really, the fact is, I find your distress more upsetting than the problem because I'm trying MY best and can't fix what other people are doing and I'm a bit afraid of being associated with you and it hurts my reputation. So. Please. Shut up."

  7. So how about this: every eating disorder treatment facility (IOP or higher level of care) in the United States has to show their outcomes on a simple question. Namely, what is the percentage of weight restoration of minimum weight for health (MWH) after 30, 60, 90, and 120 days of treatment, and what are the rates of hospitalization six and twelve months after discharge to outpatient care?

    Weight restoration is acknowledged by most reputable clinicians and academic researchers in the field to be a necessary, if insufficient, stage on the road to lasting recovery. Hospitalizations would indicate physical relapse (a less than perfect standard but nonetheless useful and far simpler for facilities to determine since psychological relapse and remission are notoriously hard to measure, much less compare). For sake of direct comparisons, all facilities would agree to use the Lock, LeGrange definitions of weight restoration and minimum weight for health (e.g. 90% of MWH, which is in turn defined as 50th % of normalized BMI for age).

    Don't have the data? Facilities will be given you six months to come up with it. Data would be reviewed by an independent (international?) board of clinical reviewers selected by FEAST and/or some other outside interest group. If, after six months, they can't demonstrate efficacy of their program with data that passes muster, facilities would be held to account for what they are: either unwilling or unable to show if their treatment is worthy of the name.

    Let's demand that everyone either put up or shut up, and then let the data decide.

  8. I would absolutely endorse this. What I've been told by clinics is that they don't have the staff or money to do these surveys, which I'm sure is true but if we did get this accepted as a standardized measure then it could be argued that clinics won't be able to afford NOT participating.

    I've been told that I'd get the Nobel Prize if I could pull of getting all the US clinics to participate in such information gathering and sharing -- because as long as it is not the standard it would be against the interests of any one clinic to do this kind of searching. Plus, it would encourage cherry-picking of clientele: clinics who wanted higher scores would discourage admitting sicker patients or patients with poorer prognosis. Clinics might cook the books by accepting patients who don't really have mental illness but just have some disordered eating behaviors. Patients with poorer outcomes may be recruited less enthusiastically for outcome data than those with better situations.

    I personally find it unconscionable that clinics can operate in any way they can conceive with little fear of oversight or sanction. Even the best clinics out there are part of this problem as they, too, have no accountability or standards that can be compared to others.

    Question: how do we choose cancer clinics? Diabetes care? Schizophrenia care? Is there a model for us to use?

  9. Well the comment about surveys is telling, since it indicates that these clinics don't actually _have_ any clinical data from the care of their patients. And I'm not suggesting a big, longitudinal study (which would indeed be difficult and expensive). No this is simply a matter of reviewing charts for one simple yet crucial metric (in this case weight restoration while in treatment).

    Reputable clinics have this data or can get it if it was deemed important. Anyone who can afford spend $18k on full page ads in the Gurze catalog can afford to hire some grad student to compile their data in SPSS for review by third parties.

    And speaking of review, again, the issues you mention above, about cherry picking and all that, sure, that could happen, but massaging data that actually exists would be progress in eating disorder treatment, as it would mean everyone would have to acknowledge that data is in fact important! And there are specifics steps that could be taken to guard against gaming the system. Peer review, for example. As you say, cancer clinics do it, diabetes clinics do it, so why not eating disorder clinics?

    There is a growing consensus among academics that comparisons of weight restoration over time, using the Locke and LeGrange standard, could be reasonable start (not perfect by any means), but certainly better than nothing. In fact I was interested to note recently that ERC has a page on its site describing its results:


    Kartini Clinic is putting the finishing touches on its own data, which will be ready shortly. I wonder who else is ready to have their clinical outcomes scrutinized?

    And if not, pray tell why not?

  10. Well, here's where it gets interesting. I don't think data taken on weight restoration while in care is all that meaningful. The data parents need is measurements 6 months, 1 year, and five years after discharge. Or rehospitalization. Or any of a number of the standardized psychological tests at those time frames.

    Any treatment center in the US with a good insurance company relationship can restore weight while in care. That's not all that difficult and not that meaningful. What matters is whether what goes on in that environment is continued for the 6-12 months afterward at home. Have the parents been trained and empowered to continue the restoration at home? Have the physicians and therapists on the home team been on the same page as the clinic? Was there step-down care, how long were follow-ups maintained?

    Weight restoration while in a hospital or intensive setting is just the first dose of antibiotic, not the treatment. And measures of patient or parent satisfaction? Well, let's just say there are a lot of issues there. Give me results over time: my gratitude and happiness at discharge about my child's treatment may be very different in 48 hours when we're home and "that breakfast is too big."

  11. fascinating discussion Morgan and Laura. I too get angry at the state of ED treatment but my anger tends to end up leaving me flailing about tilting at windmills rather than firing a blazing arrow at a defined target. This is undoubtedly largely owing to my own failings to direct my anger and stop it becoming bitterness. However I do think it is true that there isn't one target to fire at. The phrase "eating disorders are complex" is used as an excuse for poor practice, for doing nothing, for continuing to do what hasn't worked in the past, for shooing off bothersome parents who get in the way with their questioning and their worrying anger. It's also unfortunately true.

    Here in the UK we don't have the kind of choice, or responsibility to use it wisely and pay for it directly, that you do in the States, although moves are being made to offer it. We do have the benefit of guidelines and standards. These are, as yet, impossibly vague and a windmill I tilt at fairly often. There's a reason for that (their vagueness, not my tilting). There really ISN'T the evidence to compile a more direct set of standards. In comparing treatment facilities one is not comparing like with like. How do you judge between a local outpatient service which takes on anyone in the geographical area from 7-75 including those with high weight BN and BED, an inpatient facility which takes only adults with severe and enduring AN (BMI under 15 and often under 11), a specialist children's medical unit, a general psychiatric hospital, a self-help approach....?

    One criteria is patient and carer satisfaction but as Laura has pointed out there are so many issues there. How long after initial contact with the service are you going to judge it? 6 months, 1 year, 11 years and counting?

  12. @Laura - I would certainly agree with you that any treatment center in the US _should_ be able to restore weight promptly, but based on data currently available that is decidedly not the case. Lock and LeGrange found less that 75% of patients were adequately weight restored during intensive treatment. ERC tells us the number for their patients is 80%. With due respect to our colleagues in Denver, these sorts of numbers are not acceptable, at least in children (I understand the difficulties that ERC faces in weight restoring adult patients, some of whom may not have been adequately restored in many years, if ever). And I'd wager these results are on the better end of the spectrum compared to many other programs.

    Why does this matter? It matters because, in the words of Dr. O'Toole, without weight restoration you get nothing. Craig Johnson also states on ERC's website (and confirmed by clinical studies) that proper weight restoration is associated with good outcome.

    Which is only to say it is necessary but not sufficient. But if weight restoration is necessary, AND it's objectively measurable, AND we have evidence to suggest that it isn't achieved in mainstream treatment to an acceptable degree, why would we not get behind this as a good place to start insisting on verifiable clinical results?

    Sure, as you have pointed out, the real name of the game is long term remission and recovery. But until we get consensus on what that even means, let's not have the perfect be the enemy of the good. Let's get behind a movement that insists on the very basic building blocks of good treatment and go from there.

  13. That's a movement I've been on for almost ten years now!

    I want industry-wide standards, accountability, and full weight restoration as a minimum first step of treatment. I'd get behind any method for getting clinics to provide that information or, more importantly, their goal of that standard.

    But Morgan, even if providers do set that as their standard isn't it the insurance coverage that limits payment before it is reached?

  14. We all operate under the same constraints when it comes to insurance carriers, and yet some places seem to get "the job done" better than others. This should be widely known and understood by parents and referring providers, in my opinion.

    I actually think we are discussing the first steps (albeit frustratingly limited) towards industry wide standard of eating disorder treatment. As I mentioned Kartini Clinic is currently going over data for weight restoration using Lock and LeGrange definitions (if only to allow apple-to-apple comparisons). I am pushing hard to make this public as soon as possible. When we are ready to submit our findings to a peer reviewed journal for scrutiny I'd like to have this conversation again - including Craig Johnson and other facilities such as ERC who are willing to publicize (and defend) their outcomes - with an eye to making weight restoration the first standard (and minimum) measure of professional eating disorder treatment for children and adults.

    With your support, Laura, and all other parents involved in FEAST, ATDT, and elsewhere - plus those likeminded providers who are ready to initiate an new era of truly evidence-based eating disorder treatment - I think we might actually make some progress towards channeling our collective anger.

  15. Certainly in the UK the vast majority of patients aren't treated in a hospital. Outpatient treatment, with the responsibility of re-feeding placed on the family of the sufferer in the case of children and on the individual in the case of adults is the norm. How would one judge between outpatient programmes which might have very different intakes? Would publication of figures stressing weight gain encourage parents to ask for inpatient treatment when they might be better served by learning to achieve sustainable weight gain and cessation of behaviours at home? Is this http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3275816/ a success story or not? Just musing!

  16. Certainly in the UK the vast majority of patients aren't treated in a hospital. Outpatient treatment, with the responsibility of re-feeding placed on the family of the sufferer in the case of children and on the individual in the case of adults is the norm. How would one judge between outpatient programmes which might have very different intakes? Would publication of figures stressing weight gain encourage parents to ask for inpatient treatment when they might be better served by learning to achieve sustainable weight gain and cessation of behaviours at home? Is this http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3275816/ a success story or not? Just musing!

  17. I'm all for this idea, Morgan, and you have my support.

    Marcella's points are all very important as well.

    For my lights, the most urgent issue is implementing a field-wide principle that full normalization of weight and nutrition are non-negotiable and that whatever means are needed to achieve that are available and urgently facilitated. We don't have that currently, and it is urgent that we do so.

    1. Amen to that, Laura. Stay tuned.

      @Marcella - how to judge outpatient programs and their results is an important question, but one that needn't distract from an initial focus on the higher levels of care (at least in the US) as these are often the very places that bill themselves as "experts" in eating disorder treatment (and whose treatment is expensive; sometimes justifiable so). There should be some evidentiary basis for such claims.

  18. I think you are right Morgan - the system in the US is very different from that in the UK. In the UK the NICE guidelines (which are whishy-washy and out of date but which cannot yet be updated because of the lack of high quality evidence to add) concentrate mainly on outpatient care

    NICE Most people with anorexia nervosa should be managed on an outpatient basis with psychological treatment (with physical monitoring) provided by a health care professional competent to give it and to assess the physical risk of people with eating disorders.

    They DO concentrate on weight gain (and normalisation of eating behaviours, a significant proportion of people with eating disorders as a whole rather than AN specifically are over-weight and most are at a "normal" weight The aims of psychological treatment should be to reduce risk, encourage weight gain, healthy eating, and reduce other symptoms related to an eating disorder, and to facilitate psychological and physical recovery

    As I said, the available guidelines AREN'T perfect. We need a LOT more research and political (in the broadest sense of the word) will behind them but they are a start.

  19. For inpatients with anorexia nervosa, a structured symptom-focused treatment regimen with the expectation of weight gain should be provided in order to achieve weight restoration. It is important to carefully monitor the patient’s physical status during refeeding. (C

  20. I think it's unlikely that eating disorder clinics in the U.S. will get together and coordinate outcome research, for all the reasons mentioned. However, in the U.K., which has a single payer system, coordination is feasible and has actually been achieved to some extent. For example, the Gowers study comparing inpatient with outpatient care for young people with anorexia nervosa involved 215 patients and 35 clinics in the north-west of England. http://www.ncbi.nlm.nih.gov/pubmed?term=gowers%20and%20anorexia%20and%20toucan In my opinion, more of this kind of research should be conducted, and the U.K. may be one of the only places where it is feasible.

    On a somewhat related topic, many of us bemoan the perceived absence of accountability in the eating disorder profession. However, we should keep in mind that in the U.S., clinics that fail to adhere to minimum standards are accountable under the medical malpractice laws that exist in every state. An example is the current litigation against Castlewood Treatment Center. http://blogs.riverfronttimes.com/dailyrft/2012/07/third_patient_sues_castlewood.php In that litigation, the former eating disorder patients allege that Castlewood planted false memories of abuse, manipulated the patients and their families into paying for substandard care, and isolated patients from their families with deceptive tactics. The malpractice laws can be a potent weapon against substandard practices and should, in my opinion, be employed more often against eating disorder providers who fail to provide evidence-based care.

    1. On the related topic, I may be wildly off base here because I know little about UK law and NOTHING about US law, but surely there's a different between the kind of criminal case against Castlewood where it is alleged that the centre caused deliberate harm to patients by using deceptive tactics, and a civil case where a parent might retrospectively think that a centre (presumably chosen by the parent)could have provided a better model of care. Unless there is actual false advertising what could a treatment centre offering and delivering a model of care that isn't FBT but isn't abusive either be sued for? Just curious.

  21. It would likely be malpractice if a provider failed to inform parents that FBT is a reasonable option, or made false and misleading statements about FBT that induced the parents to reject it as an option, or told parents FBT would be the method used but then, unbeknownst to the parents, a different method was actually used (bait and switch), or the provider attempted to implement FBT but did so in an incompetent fashion. These are examples of malpractice. Liability arises simply from a failure to exercise reasonable skill and care; intent to cause harm is not required.
    The cases against Castlewood are civil, not criminal. Civil cases in the U.S. are brought by the individual who alleges he or she suffered harm, and the remedy is normally compensatory money damages. Criminal cases are brought by the government and the remedy is normally punishment (fines or incarceration) not, as in civil cases, compensation to the victim.


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