Hush, hush.... voices carry

Let's say there was a field, a field treating a very serious illness. In this field, anyone is allowed - even encouraged - to be an expert. The range of opinions, treatments, and results in this field is wide: from life-saving interventions leading to lifelong remission to actively harmful treatment. Yet inside the field it is taboo to question one's colleagues, and real discussion and debate sends people into their little corners in resentment and hurt. Progress is glacially slow.

I'm a layperson: an outsider to this field. It may be troublesome to have me and others asking difficult questions and exposing internal dissent to the wider world, but I find it deeply troubling that patients and their families have to be the ones, largely, pressing for clarity. The Emperor is largely undressed, and those in the field know it, but seem resigned to it as well.

If you are treating OUR CHILDREN you have a responsibility to be at the cutting edge of knowledge and science and that what you believe and do be an open book. If you treat eating disorders and you are NOT speaking up in your field to improve it, then you are part of the problem. If you are treating eating disorders and the minutae of the science is over your head, get more training or find another specialty. If your field is in disarray and you don't want parents and patients to know it then you are part of a dysfunctional "family" that needs to get to work. For a field that so values open communication and not hiding from feelings and the skills of discussion: the conflict avoidance and low distress tolerance bodes ill.

To be more afraid of dissent than the dangers of a field where any opinion and any approach is equal and unassailable is sad indeed. It is infuriating to me that professional courtesy would override righteous indignation - or denial - of a field without moorings.

For dissent and serious questioning to come from OUTSIDE the field is a slow process. People inside the field need to start engaging in real discussion and maybe even in public:
Effective eating disorder treatment includes psychotherapy is a rare view into someone speaking out directly, and someone exposing the sad truth that the taboo is not just dissent but dissent in public.

Mutually respectful, awkward, and sometimes painful discussion is needed in this field. Now. Holding people accountable for their public statements and writings and speeches is part of that.

I don't like some of my reviews on Amazon and elsewhere, but I need to hear them and be accountable for any valid critique - and engage that critique with openness and humility.


  1. Precisely and exactly why I am willing to take the heat on my blog, despite warnings that it will endanger my local reputation and make people avoid referring to Kartini Clinic.

  2. i agree. In this field, and any other. I see more often the flip-side with parents coming to me for "obesity" and it infuriates me that their health care providers are doing so much harm. An adopted two-year-old with a history of severe food restriction should not be put on a diet after rapid weight gain resulting from refeeding. I am seeing such misery, harm, despair too, much of it avoidable. Keep fighting the good fight. The "experts" that families are seeing are not trained, are not open-minded, do what they've been doing for years in spite of ample evidence that it's nor working, and ignore the desperation of the parents (you must not be doing what we told you...) It's all too familiar.

  3. amen.
    I am shocked at how many people can call themselves an 'eating disorder expert' ...I know people who are only in their first year of social work and they are treating people with eating disorders, all the while they still have eating body image concerns of their own. ~ Part of why I can't wait for the FREED Act to pass is so that we can train medical and school professionals in the prevention, detection and treatment of eating disorders with the best and latest cutting edge knowledge of how to do those three things (prevent, detect and treat)

    When I train people (including doctors), I emphasize that you should not be in this field if you are a) suffering yourself with any range of ED/body image distortion b) to learn all they can beyond our one hour training, and then go back and learn more. Anything less than that is an injustice in my eyes.

    (ps: --hmm, I wonder in what other field does a non-MD train MDs? ~~ pps: to help allay any fears that pop up from someone who just read that I'm training MD's on ED's, please note that I am supervised by an MD:)

    Thanks, Laura, for calling people out to be better "experts" in this field. And "familyfeedingdynamics" --I agree with all you've said!!

  4. Since M and I started making films in January, we have been privileged to be in communications with some pretty cool experts, Dr O Toole among them. Professor Treasure and Gill Todd have been interesting and interested, open to new ideas, new emphases, new approaches. Julie has been dynamic in helping us out with the weight restoration dilemma of having no height weight data to go on. We have also been talking to other eminent professionals about this issue and another one. We have found them all kind, courteous, long suffering and keen and eager to share their knowledge. They have also listened to what we have to say and adopted some of our ideas and suggestions, without patronising us or dismissing us "hysterical" parents.

    If we (parents) can have these discussions with eminent specialists (the results of which will be seen within a month), why can't the professionals have similar discussion amongst themselves, in the open, without resorting to the tactics of 5 year olds in the playground? It is disheartening to see someone raise a discussion point that was not a personal attack, being told off for raising the point where parents and patients might read it. Why? Are we parents and, perhaps more importantly, patients not allowed to know or understand the reasoning behind such clinical debates? Are we too stupid? Surely to make an informed decision about treatment, the patient and the care team should know and understand the basis on which the treatment is being built?

    Time to stop patronising the people who really matter, I think.

  5. I have to agree, and I am going to make the same argument Charlotte makes for parents for adult patients. For example, I would very much like to see the evidence base my former EDU worked from - where does it say in the literature that people who have been ill for so long would be better off maintaining lower weights? Where does it say that BMI 17.5-18.5 is an adequate target for most patients? Where does it say that discharging people is the best course if they can't comply with OP/IP treatment? Where does it say that if a person does not respond to treatment the first time, they should be labelled as chronic?

    I am sick of being told that my previous illness was due to cultural influences/childhood trauma/feminist issues/sexuality issues/control issues/being a perfectionist - none of those things are true! You cannot put all anorexics into one box. The one thing that does hold true is that they all need to get to a healthy weight to make a full recovery - after that, the particular therapies/coping strategies/triggers to work through will be totally individual. I wish the "experts" would stop acting as if one mentally ill person is the same as all mentally ill people. I am not interested in celebrities or fashion. I am comfortable in my sexuality. I am not a perfectionist. I had no body dysmorphia. All I needed was someone to support me in the difficult task of facing my horrendous anxiety over eating more and gaining weight.

    I don't get why some professionals are so precious. Neither patients nor parents are uniformly unintelligent, or too delicate for the discussions. We could probably teach them a few things too.

    (Slightly bitter rant over with!)

  6. Laura, you describe a very sorry and harmful situation. I am with you in hoping that more and more clinicians IN the field will speak out to their colleagues about treatments that have been scientifically proven to be more effective than others, and and keep working for accountability in treatment outcomes, and demanding proper education in the most up-to-date scientific evidence about the field of eating disorders for all those working in the field.

    I am so grateful for people like Dr. Julie O'Toole and Dr. Ravin, who don their heat-resistant duds and speak their rational minds on this subject.

  7. I agree. I have lost count of the number of consultants and registrars in my public service who have very 'antiquated' views on eating disorders in general. It's frustrating to be trying to get better when the treatment views of your doctor seem to belong in the 1980s, and they also will not change their views of the person in general from the outdated stereotypes from back then (white, rich, middle class, vain, spoilt, childishly trying to get own way blah blah blah...)

    If you are treating eating disorders, it's your responsibility to stay on board of what's happening, as new ideas are bounced around and new discoveries made. Just like any other illness. I'm sick of mental illnesses (some of them anyway and esp eating disorders) not being seen as a 'proper' illness and rather just a state of mind in someone who needs their backsides kicked and not much else.

  8. One of our panel participants said very much what you have written here to a room full of therapists and nutritionists. I so agree.

    I also think you should consider coming out with a second edition of your fabulous book. I am re-reading it today and cannot help but think that if it had been published today, it would be enthusiastically accepted and purchased.

  9. I agree wholeheartedly! The treatment of EDs involves our precious children and life threatening illnesses. Do it right or don't do it.

  10. I know that psychology is all about the talking, but I think we would be farther ahead, if instead of talking about what caused an eating disorder and talking about our opinions of different types of therapy, we could band together and spend this time promoting research to find the most effective treatments, spurring programs on to assess their quality and outcomes, to find ways to reward or spotlight providers and centers who do good work and to promote family centered care which actually is a national goal in the USA.

    For more info:

    I think it is second nature for mothers to feel guilty. I think ed providers need to specifically tell parents they are not to blame and that this is a mental illness that runs in families. Even if parents are not specifically blamed, if they are not specifically absolved of blame, then everything that comes after that will seem like blame and shame to a conscientious mother. I am a pediatrician for newborn babies and I can tell you that the only mothers who do not blame themselves for their babies' illnesses are some mothers who use cocaine. Mothers who want to take good care of their children do feel guilty over their illnesses. These moms need someone to take that guilt away and help them feel confident. Unfortunately, the approaches used in ed treatment for many years have added more guilt and shame onto families rather than lighten our loads and giving us confidence to care for our kids.


  11. Laura, Dr O'Toole, Dr Ravin, Charlotte, CandM Production etal, FEAST.... please keep speaking out.
    I am on a Govt Advisory Committee in South Australia looking at creating a new model of care for Eating Disorders in this part of the world..the ignorance and arrogance of some 'experts' is plain scary. Along with my own personal experience I carry your collective wisdom, experience, knowledge but mostly your humanity and compassion, with me to every meeting. You are the invisible members of our family living with us and carrying us through this nightmare. We hope, one day....., to share our daughter's full recovery with you in some way.

  12. I have to presume that Dr. O'Toole and others were aware of the context of the conference, including Dr. Zerbe. Yet, I find a lot of sense in the comment by the first MD who qualified Dr. Zerbe's words as a presentation of care above and beyond the expected basics of nutrition, clinical oversight and related services.

    I was a patient at The Menninger Clinic while Dr. Zerbe was there (when the clinic existed in Kansas), and I saw no low-weight ED patient escape inpatient care that included nutrition, internal medicine, pharmacological, and many multidisciplinary treatment approaches. In fact, patients stayed on units longer at Menninger, closer to or meeting goal weights, than at most any facility I have been treated since. Menninger ate the cost of care, to the detriment of an endowment, which is part of why the campus/program no longer exists as it did and had to partner with Baylor.

    No psychiatrist at Menninger would see you as a low-weight patient or a symptomatic bulimic, etc., without the patient also agreeing to that higher level of care. But because it was a campus setting, and b/c the IP model included therapy 2x week or more, it was possible to explore issues while still at the inpatient level.

    It's also possible for patients to meet treatment and discharge goals, continue in therapy, begin to lose weight, and repeatedly relapse through the admission/remission cycles ... over four years or more.

    I can't speak to the conference or Dr. Zerbe's current theories or practices, but psychotherapy was never used in isolation at the EDTRP at Menninger when I was a patient there during her tenure.

    I also think it would have been most helpful to state the concern of Dr. O'Toole and others, briefly and directly, to check it out with Dr. Zerbe. She can handle it, and that's what mental health professionals, especially those inclined to CBT/DBT would advocate right?

    No mind-reading or jumping to conclusions ... always check it out, non-judgmentally, then discuss each others' understandings .... "I'm hearing you say ...," "That leads me to believe you don't subscribe to evidence-based care, which doesn't support isolated psychotherapy in low-weight patients, and I disagree with this premise." Dr. Zerbe could have confirmed, denied or added to this clinically and situationally appropriate question, and Dr. O'Toole and others could have continued the discussion/followed-up on blogs and such.

    As a patient, it's disheartening to see such poor communnication, indirect communication, among esteemed colleagues in a growing field of study that needs all the insight, experience and vigorous discussion possible.

    It's disheartening to see the leaders in the field submitting theories and rebuttals from every post in the field. Who are we to beleive, and when, and how ... and how do we reconcile our own treatment experience and illness history with all the information out there?

    (remainder of comment to come in second comment ... exceeded limit)

  13. (Continued from The_Timekeeper) ...

    I find deficits in both approaches ... strict evidence-based care focusing solely on nutrition rehabilitation (ironically, combined with what can be a cognitively challenging course of CBT/DBT ... I have seen very sick patients at a loss in these groups on units at evidence-based care programs).

    Supportive psychotherapy at the outset, and throughout, an inpatient admission for re-feeding would be an adjunct to the evidence-based regimen ... make it better for me ... easier to tolerate the difficult early parts; the supportive, caring interaction that doesn't come on units with boundaried definied mostly by limiting staff/patient relationships to strict carrying out of clinical-care orders, hospital nursing and meal-monitoring, symptom-management.

    Psychotherapy alone, I know for sure, won't help me gain weight b/c there isn't the structure and accountability ... if I could do it myself, I would have.

    Why not have the best of both worlds? Why not practice making that pyschotherapeutic connection/relationship in the hospital phase? Each discipline could support the other, which could support helping patients remain in care for longer periods of time ... an identified difficulty for this population (treatment completion).

  14. Thank you, Timekeeper, for the perspective. I agree with you. I have not met anyone - anyone - who really believes in nutrition without psychological treatment, or the opposite. Everyone seems to agree, I think, that both are both necessary and insufficient on their own.

    The problem, as I see it, is in a tolerance for allowing either situation. There are people who focus on nutrition and fail to make sure psychological supports and ongoing work are going on. There are people (many, many, many) who believe nutrition is important but let it be a matter of choice, or degree, and leave it up to the patient's degree of motivation and let legal or technical problems get in the way.

    Both of the above are failures, in my opinion.


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