Parents are professionals

Eating Disorders Review has a new issue online and it includes a comprehensive article on the Keynote presentation by Lilienfeld. During that speech I was cheering and tweeting and nodding and wishing you all were there. I blogged a tiny bit on it, Carrie and others did more, but the EDR article is the kind of access to the professional ED world that I wish more parents had access to and sought out.

We parents need to care what the professional world is talking about amongst themselves. I go to these conferences and participate but we need more families doing so. There are those who say this is inappropriate or that professionals have some sort of special club or privilege: that's a myth. I wish it was true! 

The eating disorders "community" is really a number of somewhat overlapping social groups and a number of trade organizations whose chief goals are professional development and marketing. Although some names are known to all, and some domains of research are commonly referred to, the truth is that most of the ED world doesn't talk to or listen to one another. There's nothing that is agreed upon. No one field or level of professionalism has ownership or requires accountability. There are small groups who mostly only know or deal with one another. It isn't just a research-clinical gap, there is a lack of any common principles or practices or beliefs.

One thing parents can do is read and familiarize ourselves with everything we can, including professional journals. We can also hold opinions, and we can interact with the professionals out there publishing and speaking and doing advocacy. There is no line, really, between professionals and the public. There is no certification or professional guild that makes one person an expert on eating disorders and someone else an outsider. We are not outsiders. 

In a field with NO consensus, NO standards, and no professional certification we parents - and patients and concerned members of the public - have a right and a responsibility to inform ourselves and form opinions based on the facts.

Comments

  1. As you know, Laura, I formerly attended eating disorder conferences. I no longer do. I consider them to be a waste of time. In a few days of reading, parents can learn what little useful and objective information the eating disorder profession has been able to develop. All the rest -- and the majority of the stuff that goes on at conferences -- is speculative, conjectural, and ideological in nature. In my opinion, parents will actually learn more useful information from other parents whose kids have recovered from anorexia nervosa than from all the eating disorder professionals in the world combined.
    If anyone feels differently, please say so. I'd be interested to hear an example of how anything that has been said by a professional at an eating disorder conference has actually been evidence-based, conclusive, and demonstrably helpful, rather than speculative.

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  2. My experience is the opposite. Most of the best science IS being talked about at these meetings and the bad information and fluffiness is going on in practice. If parents WERE getting the information in the presentations, workshops, papers and the hallways we would be seeing a wide range of stuff and better able to evaluate and use it.

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  3. My experience has been as yours Laura. This is not to say that some of the matters being discussed have not been contested, that there is not great dissension between genuine experts, that enough research has been done to ensure that there is enough evidence even to discuss freely let alone apply in the field. This is a neglected subject within the generally neglected area of medicine that is psychiatry. However by parents being at that table, listening and speaking up and contributing, we can help to change that.

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  4. Laura, I'm not sure what you mean in the last few sentences-is it necessary to form opinions on facts? And honestly, are there any facts that will hold up in 100 years? I'm not too sure about that either. There are speculations a plenty and we can have all the opinions we want on those, but I think the ed world has gone on too long basing treatment on speculations.

    Quote of the day:
    Teach thy tongue to say 'I do not know,' and thou shalt progress.
    Maimonides

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  5. an example of a subject discussed in a conference environment about which there is genuine debate and the need for further research?

    If that's what you would like I have one;

    At the EDIC 2012 conference held in London UK in March of this year, there was a plenary on Development and Neuroscience. http://www.edic.org.uk/ScientificProgramme/Thursday15thMarch.aspx In my naivety when I first heard that this would be discussed I thought it would be the session my fellow parents and I found least controversial. In fact it was the one that provoked most debate among us, and a great deal among the professionals from various fields as well.

    In particular the talk on ante and peri-natal influences provoked much discussion. Dr Angela Favaro seemed to me to be stating the obvious, that children who went on to develop eating disorders had experienced problems very early on, that maternal stress could influence fetal development, that mothers of her (very severely ill, long term suffering) patients recalled such problems. I was surprised to note that this did not resonate AT ALL with many of the mothers with whom I was sitting. They dismissed it as without backup in their experience and as another form of mother blame. SO DID SEVERAL PROFESSIONALS. One in particular, who uses only evidence based treatments that are agnostic as to cause (FBT with children and CBT with adults) and treats a wide spectrum of patients in the community, felt that the whole European neurobiology field was looking at too narrow a population (those sick enough with AN to get into a hospital)and that there was no evidence at all that the peculiarities in thinking found in people ill with the disorders weren't caused by the illness rather than a cause of the illness. Those professionals using a social model of the illness i.e. feeling that the environment at a much later stage in life in the sense of parenting, media, oppression of the female or whatever and offering "prevention" strategies were dismissive too as it failed totally to fit in with their modus operandi.

    A great deal more research needs to be done to establish whether these neuro-biologists are barking up the wrong tree totally, whether Thomas Insel is right and there is not just one illness but a cluster of them (how to work that out when most of the descriptions of and tools for assessing the illness come from the evidence gathered by those taking a transdiagnostic approach?) whether true early intervention, at two or three rather than at the onset of obvious symptoms can ever be a reality, or is even possible or desirable. Yes, the debate on this subject is speculative, conjectural, and ideological in nature. I can see it having enormous practical use in the long term but the risk will have to be taken to give resources to the research and it may turn out that the naysayers are right, or that the population for whom this research is applicable is so small as to be statistically invalid and not worth concentrating treatment options on, even if it does include my child.

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  6. My point in the post wasn't so much about the admittedly variable quality of conference content. My point is that parents need not sit waiting or feel they are overstepping some priestly boundaries by reading original research and attending professional conferences. There IS no professional world for eating disorders and parents have every bit as much of a right and qualification as any eating disorder "professional."

    I wish there WAS a professional qualification, certification, body of common knowledge that a parent or member of the public could depend on for comprehensive and reliable professionalism. There isn't. There is genuine peril in saying "He's a doctor so he understands eating disorders." or "She's treated hundreds of eating disorder patients so she knows her stuff."

    We can and should do our homework and make our decisions based on the facts we gather. We can't depend on others to digest information for us or turn over our decisions to others without making sure we understand what we're hearing.

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  7. PS, Marcella's example is exactly the sort of observation that one ONLY gets by showing up. And your wisdom in picking up how people judge data by their own frame of reference is priceless.

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  8. Wow, why would I get a PhD, MD or any other degree in the field and spend countless hours on training and education when I could just have a kid and become an "expert"? I wish someone had told me before I went into thousands of dollars of educational debt!

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    1. I love sarcasm: well done!

      But I think you missed the point. I didn't say that parents are experts. I said that there is no professional degree or qualification that tells us who is an expert on eating disorders. There is no profession for eating disorders - and very little professional training for eating disorders that would be generally accepted. No central body of knowledge or even any commonly understood body of principles.

      The burden of proof on what an "eating disorder expert" is still rests on that clinician and the responsibility to evaluate what treatment to seek out is on the parents.

      Just having an MD or a Phd or other degree doesn't mean the person knows more about eating disorders than any other individual.

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  9. In my opinion, the conferences hosted by MaudsleyParents have been excellent. The AED conferences pretty poor: the pros go there to network with one another for professional advancement. The NEDA conferences generally terrible: they are a marketing extravaganza for the for-profit treatment centers. The EDIC in London not so great either.
    Parents are well advised to read the literature published by eating disorder professionals. Go on www.pubmed.gov daily and read the abstracts. The primary authors of most papers give their e-mail addresses on the abstracts. They expect to hear from other professionals. Shock them by sending them an e-mail telling them what you, as a parent, think of their work, pro or con. After all, THEY work for YOU. As a citizen, you pay for most of their research through your taxes. If they are doing a lousy job, tell them. Laura is correct: these is no certification that makes eating disorder professionals experts and parents not.

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  10. Dear Anonymous 10:14,
    Throughout most of the 20th Century, professionals blamed and marginalized parents of kids with anorexia nervosa. There was no logic or evidence for this; it was simply part of the professional culture, similar to a mass delusion. Now, the prevailing view seems to be that parents and professionals should collaborate with one another. My opinion, however, is that true collaboration is neither possible nor necessarily desirable, and that it is parents, not professionals, who should be in charge of helping their child or adolescent recover from AN. As a professional, your role should be secondary. You are there to support the parents when the parents ask for support and to stay out of the way when they don't. I predict that this model will become the prevailing approach to treatment for anorexia nervosa within the next few years.
    It strikes me as quite arrogant to think that simply because you spent "countless hours on training and education" you know what is best for our kids. As parents, we have spent countless years raising our kids, and we actually have a more sophisticated and nuanced understanding of their individual psychology than you could gain in countless hours in a classroom studying for your MD or PhD.
    Regards,
    Anonymous 11:38

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  11. Parents can subscribe to EDR. It's free. Here's the link to sign up http://www.eatingdisordersreview.com/nav/subscribe.html

    I disagree with you that there are no standards or certifications in the field. APA, AAP, NICE guidelines are solid. There is an FBT certification. There's plenty of room for improvement, but I acknowledge the positive steps that have been taken.

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    1. The APA, AAP and NICE guidelines are weak, outdated and largely unused. Certainly no one has to use them - even NICE in the UK - or risk censure or professional problems.

      The FBT certification is the best indication for a family that they are dealing with someone with good training and supervision - but until there are enough of them (only 29 people are certified and 15 in consultation) and there is some obligation for the close to 100 percent of clinicians to tell parents about that, it's not as meaningful.

      I acknowledge the positive steps. But they aren't meaningful for any but a tiny minority yet - and won't be unless SERIOUS changes come about. As long as anyone can call him or herself an eating disorder expert and there are no sanctions or incentives we may see another generation or two of unnecessary morbidity and death.

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    2. I disagree with you that the guidelines are weak and outdated, but agree they aren't used to the degree they should be. There's a long way to go with clinician training in FBT and CBT, but the pace is really picking up and will continue to grow I'm more optimistic about eating disorder treatment than ever before.

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  12. This is FUN! I get to disagree with both of you!

    We are not going to move to a treatment approach where parents are in charge. That's silly and dangerous. Very few parents are in any position to do so and most would risk dangerous harm to their children's lives and their marriages and the well-being of siblings.

    What we need are more clinicians - and their numbers are growing - who collaborate with parents so that the skills of BOTH and the most appropriate boundaries for BOTH work in the patients' favor. We need better trained clinicians, better research conceptualization and execution and dissemination, we need accountability for clinicians to assure that they do use best practices.

    We ALSO need parents to take responsibility for finding and LISTENING to competent, skilled clinicians. While much of the reason parents fail at supporting their loved ones has to do with bad or conflicting or too-weak professional advice it is still our responsibility to do some hard work that some parents don't want to do.

    Parents are choosing to pay for and allow their insurance and health systems to support care that is patently poor and inadequate and often damaging. We're buying products without proper research and swallowing books and articles that are demonstrably weak. We are failing to call people to account - sometimes fellow parents - who spread poor information. We're repeating bad information to other parents without really understanding it.

    We parents need to take responsibility for our choices and for the continuing lack of professionalism out there. We need to support the clinicians and researchers who ARE doing excellent family-supportive and evidence-based work. We need to share our experiences with fellow parents so others can find and understand better care.

    We can't dump all clinicians into a heap any more than we can all parents - not credibly, at least.

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  13. Laura,
    I disagree with you. It is not silly to say that parents should be in charge of their kids's recovery from anorexia nervosa, and that the professional's role should be merely secondary and supportive, and should come into play only when requested. An often overlooked aspect of FBT is that the professional defers to parental judgment. In FBT, families are encouraged to work out for themselves how best to help restore the weight of their child with AN. Parents are discouraged from relying too much on professionals. This is not "dumping all clinicians into a heap." It is recognzing who has the greater skill and deeper understanding of the patient. Just as a GP defers to a surgeon when surgery is required, an eating disorder professional defers to the parents when treatment for AN is required. Surgeons are not dumping Gp's into a heap when they take charge of surgery; they are doing their job, for which they have specialized skill and experience. The same is true when parents take charge. They are not dumping professionals into a heap; they are assuming the parental role for which they have legal and moral responsiblity.
    When Lock and LeGrange proposed this approach, most eating disorder professionals were shocked and thought they were crazy. Lock and LeGrange persisted, however, did the hard work of conducting clinical trials, and now have been vindicated. FBT (as I described it) is the approach recommended by the National Institute of Mental Health in the U.S. and by the pediatric societies in Candada and the U.S.
    Of course, most eating disorder professionals don't want to give up their positions. They like being in charge. They make a lot of money being in charge. They have generally been trained to distrust parents and suffer from delusions. But that will change.
    By the way, since this thread began with a discussion of eating disorder conferences, I will add that the Renfrew Foundation conference (which I have attended) is the worst eating disorder conference I have seen. The level of intellect is generally low, very few, if any panelists offer evidence for their theories, and the themes tend to center on psychoanalytic and psychodynamic treatments that have been shown empirically to be worthless and dangerous in treating children, adolescents, and young adults who suffer from anorexia nervosa. The discussions are usually several years behind the state of scientific knowledge, and there is very little involvement by scientists. As a parent, I found the Renfrew conference to be almost a complete waste of time and money and counterproductive.

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  14. Oh, now, I know YOU know FBT isn't parents in charge of treatment FBT is a specific therapeutic approach to empowering parents to do one specific part of treatment and that's very different. Parents don't arrive at the FBT therapist's office knowing what to do, how to do it, what part they should do, and what parts not to do. In fact, parental instincts are generally VERY different than what they are empowered to do in FBT. FBT and treatment as a whole are FAR more than what parents do.

    You also know that I agree that most of the content of most ED conferences and journals and books are the fluffy stuff. That's not my point. My point is that parents should and are really at a disadvantage if they do not get the information that clinicians have access to - we've spent YEARS learning and I still learn more every day that I try to. If I knew THEN what I know now I would have done a better job supporting my daughter.

    You can't argue that parents should look at the evidence and that the evidence is meaningless. The truth is more nuanced: we need to know about what's out there to make better decisions about what is true and false. We can't depend on someone's degrees to tell us that their words are more reliable, not in a field that has no consensus and no accountability. Those out there doing good work - and there are many - are still the minority and consumers and governments have no way to distinguish the difference.

    The hubris that allows you and I to THINK we know the difference took years (and mistakes) to gain, a luxury that families in need don't have.

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  15. PS, I happen to recognize most of my anonymi by their style and content but it's a pain in the butt for those who don't to follow. Use names, for clarity's sake.

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  16. Laura,
    You are speculating when you say that "parents don't arrive at the FBT therapist's office knowing what to do," that "parental instincts are generally very different than what they are empowered to do in FBT," and that "FBT and treatment are far more than what parents do." I think parents know what to do. They arrive at the FBT provider's office planning to feed their kid to a healthy weight, help her re-establish normal eating patterns, then assist her to get back on track with a normal life. If their instincts didn't tell them to do these things, they never would have shown up in the first place. Parents know that in manualized FBT, the professional will be involved for only 20 sessions, so there's no time to waste. The approach is simple. It taps into the instincts of parents. There is no model that has been proven to be better.

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  17. Re-read the manual, talk to some FBT clinicians, and give it some thought, C. It's just not true. YOU may have known, but I certainly didn't and few of us do. Parents often, probably most, need coaching and direction.

    And more to the point, and one you are avoiding, is that FBT isn't just re-feeding and it isn't just telling parents to find the best way to re-feed. That is one of the aspects, but only one.

    Very few parents go to providers knowing about FBT or about re-feeding. I talk to hundreds of families a year and few have been told and even those who know about it have only the most basic overview. You can't extrapolate your experience, your confidence, and your drive to do the research yourself.

    I don't want parents to go it alone, and I don't want parents to stop consulting or trusting clinicians. Not all clinicians are the same. I want clinicians to be available that are skilled, well-trained, and current on the literature. I want parents to find and to trust and learn from those clinicians. FBT relies on the special commitment and personal knowledge about the child, but not about ED and about treatment. When you characterize FBT that way you mislead and risk harm.

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  18. Anonymous 3:16 YOU may have arrived in a therapist's office planning to feed your child to a healthy weight, help her to re-establish normal eating patterns and assist her (in many cases it's him)to get back on track to a normal life.

    I arrived terrified that my child would die and that it would all be my fault for not being firm enough. I left the first few appointments with these fears confirmed. We struggled through our 20 sessions, maybe a few more, and were spat out at the end of it with many of the same fears and not a lot more skills.

    FBT (which was manualised in the US but which first developed in the UK at the Maudsley Hospital) is indeed the ONLY treatment for AN for which there is any reputable evidence, the evidence for CBT-E coming largely from studies of adults with bulimia. NO ONE would surely argue though that the evidence from a few studies (and it IS only as yet a few studies) on patients who were selected for suitability for the treatment (e.g. had parents, lived at home and were adolescents), which is still the subject of argument (it is enlightening, if not immediately comforting, to hear clinicians challenge each other on the quality of their evidence) means that this should be the ONLY treatment and is suitable for ALL patients.

    PS if you don't want to use your real names you can use a pseudonym like me, although don't use more than one or, like me, you'll get muddled as to who you are ;-)

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  19. by the way, at the EDIC 2012 conference (and I realise that at least one of you isn't much impressed with EDIC but it was the only one I could afford to travel to this spring so perhaps that's why) one of the people who most contradicted the messages that "food is medicine" and "treatment begins at home" was the parent speaker. He argued from his own experience that more talking therapy should be given, that there shouldn't be so much emphasis on re-feeding alone, and that more residential places were necessary. These were just his own opinions, just as yours are yours and mine are mine, but if anything they show that indeed you cannot lump all parents together in a heap any more than you can clinicians and, if it's economically feasible to do, attending a conference or two is a good way of finding this out and learning from everyone.

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  20. In their groundbreaking study, Lock and LeGrange describe FBT as follows: "FBT is a 3 phase treatment. In the first phase therapy is characterized by attempts to absolve the parents from the responsiblity of causing the disorder, and by complimenting them on the positive aspects of their parenting. Families are encouraged to work out for themselves how best to help restore the weight of their child with AN. In Phase 2, parents are helped to transition eating and weight control back to the adolescent in an age appropriate manner. The third phase focuses on establishing of a healthy adolescent relationship with the parents. Twenty-four one hour sessions were provided over the one year period."
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3038846/?tool=pmcentrez
    One of the groups in the Lock and LeGrange study received FBT, as described above. The sufferers in the other group received AFT. In AFT therapy, by contrast, as outlined by Lock and LeGrange in their paper, "the therapist actively encourages the patient to stop dieting and to gain weight by setting weight goals and emphasizing the need to change these behaviors. The importance of weight gain is discussed and actively encouraged throughout treatment until the patient is weight restored."
    Most people, I suspect, would anticipate that AFT treatment would be more successful than FBT. After all, in AFT it is a highly-trained professional who is placed in charge of helping the sufferer to gain weight. The therapists who participated in the study were highly experienced, well- trained, and among the best in the business. In FBT, by contrast, it is families themselves, not professionals, who are encouraged to "work out for themselves" how to achieve this goal. These families did not go to school to study anorexia nervosa. They did not receive fancy degrees. They were randomly selected out of a pool of 120 taken from the general community. With respect to anorexia nervosa, they were amateurs.
    The results of the study were the opposite of what I think most people would expect. It turned out that the families using FBT had a 49% recovery rate after two years, and only 15% of the sufferers needed to be hospitalized. By contrast, after two years only 23% of the patients who received AFT were recovered, and a full 37% of the patients became so ill that hospitalization was required. Not only that, but the patients in the FBT group were continuing to recover over time (an additional 9% recovered between year 1 and year 2), while the gains made in AFT eroded over time (17% in the AFT group relapsed between years 1 and 2).
    I think this study is persuasive evidence that families, with relatively little assistance from professionals, are capable of helping their kids recover from anorexia nervosa. I do not share the view that parents need extensive coaching and direction or that "very few know about re-feeding." I think you are selling parents short, Laura, and perhaps operating from your personal experience, not from a representative sample. I think that it is unhelpful and risks harm to tell all parents that they are essentially incompetent and necessarily "need" coaching and direction beyond the encouragement to find their own solutions. The next edition of the FBT manuaul is scheduled to be released later this year. I think parents should read it, study the experimental data, and decide for themselves.
    C

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  21. Yes, Laura is operating from her own personal experience. So are we all. So are the professionals. That's one of the points of the post - there ARE no hard and fast rules or facts or standards in this field.

    There are some very good studies, and some pretty appalling mumbo jumbo, and a lot in between. Parents have the right and responsibility to join the field and to contribute to it (via the Internet and in very short snatches will be the only way to do it for a cash strapped parent committed to the home for 3 meals, 3 snacks, supervised bathroom visits and all night suicide watch each 24/7)but we need to listen too and to show respect, to the professionals, to the researchers, to the history of the field, to each other.

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  22. This is the other "C".

    Look, let's get a bit of a reality check going here. I think the anonymouses are talking from a very narrow viewpoint. The tiny world of FBT and the variety of forums and website adhering to the gospel according to the Maudsley Method (whether original and or manualised) can spout all the chapter and verse they want from a slight sanctimonious and condescending position but the reality is very different for those of us who work outside the parameters of this cosy, safe environment.

    I have yet to meet a parent who knew about FBT straightaway, without an immense amount of research, or happening to have a good local FBT practitioner or finding FEAST or Maudsley Parents or the ATDT forum. I have yet to meet a parent who wasn't frightened, disempowered and bewildered by an eating disorder in the very beginning. I find it heartening that one of you knew exactly what you were doing. Perhaps we ARE getting somewhere.

    I have come across parents who are unable to make FBT work, even with the best clinical back-up. I know parents who have made 5 or 6 attempts at the manualised method and have had to try a variety of other things. Let's be clear here, the FBT method that "C" above is talking about is data based on a trial that takes place in a strict clinical setting, with highly trained staff and the 10-40% for whom it doesn't work are never discussed. This is not home refeeding, with an hour's therapy a week, which is more the norm, if you are lucky enough to get FBT. A touch of realism is needed to temper the somewhat evangelical tone of this debate.

    I have come across many many many parents who have children who have been sick for 10 years or longer and do not have the strength, willpower or energy to undertake yet another "new" therapy, that has no proven track record outside the "adolescent" category. Their children have been refer in an IP setting to 90% of their IBW and then released with no back-up or instruction at least 3 times and are likely to be readmitted again. Doing FBT with an older child, a young adult or even a child in their 30's and 40's is not quite so simple.

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  23. As a parent who did FBT by the book, but without the therapist and was successful, I DO believe that it is a vastly superior treatment. However, it is not without its faults and its failures and spouting forth the whole "FBT or give up" is just plain silly. A new book is all very well and exciting BUT the majority (if not all) parents who are new to this disorder need direction and coaching.

    I interact with a lot of the same parents as Laura and I know that FBT just isn't going to work for some people. I am also aware that it is going to work for some people, if I could just work out a way to bottle some confidence and a back brace. To be fair, why on earth should they listen to a load of disparate parents on the internet, rather than their long-trusted family doctor or local "ed" specialist or recommendations by friends and family? It takes a long of courage (and aforementioned confidence) to go against conventional wisdom and treatment. Conventional wisdom and treatment comprise over 95% of the options out there - why on earth should they listen to the fringe 5%?

    What I believe Laura is saying, before we all got bogged down in this very tiny FBT corner of the ED world, is that ALL parents need to read up on everything, get informed and work out what is best for them. Reading the latest research data, whether you agree with it or not, gives you a bit more gestalt and the opportunity to take pieces of information and make them fit YOUR situation. Heck, some of us follow recipes word for word, others need to improvise because they haven't got the ingredients and others still cook entirely from the picture. Who is to say whose approach to cooking is better? Those of us who can speak out, need to speak out and keep connecting, without getting bogged down in our own particular section of the Creed.


    Whilst I admire the zeal about evidence based treatment and FBT in particular, I think that some of you are missing the point entirely. Just because it may have worked for you, doesn't mean it is a sure fire receipe for someone else.

    As for the NICE Guidelines, being the UK expert in them, they are wishy washy and all the good, clear directional sentences are carefully disguised amongst a load of other nonsense. I can find the relevant bits but I do not know of any GP/MD or ed therapist, or general psychiatrist who has sat down to read the hundreds of pages and taken them time to analyse what they are saying. AND, they are only guidelines. They have no legal obligation attached to them. You can wave them in the face of as many clinicians and hospitals as you like. Following them is optional, not obligatory.

    As for Laura selling parents short and operating from personal experience, cheap shot, "C" and really not worthy of you.

    Charlotte Bevan

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  24. Charlotte,
    Not sure what you mean by a "cheap shot." My point is that I don't think Laura can generalize about all parents based on her personal experience talking to "hundreds of families a year." The best available evidence is that the prevalence of anorexia nervosa in the population is about 0.5%-0.7%. That means in the United States alone there are probably at least 500,000 to one million sufferers and families. If she is talking to "hundreds" of them, then she is seeing only the tip of the iceberg, representing approximately one-tenth of one percent. I don't think it is reasonable from this personal experience to conclude that no parents are able successfully to be in charge of their child's recovery without the involvement of professionals.
    I don't think we know enough to conclude whether professional involvement, on balance, helps or hurts in the treatment of children and adolescents who suffer from anorexia nervosa. At the present time, in the U.S., however, professional involvement almost invariably means psychoanalytic, psychodynamic, cognitive-behavioral, or family systems treatment. There are many reasons to suspect that each of these kinds of treatment actually causes affirmative harm iatrogenically. As Laura correctly points out, on the other hand, the number of professionals who offer the treatment model with the best empirical support, FBT, number in the dozens. If this situation changes in the future, then of course I would be willing to reconsider. However, at the present time, I think it is not unreasonable for parents, not professionals, to be in charge.
    CB (By the way, I'm also Anon July 12, 12:05 and July 13 11:38, 1:01, 2:00, 3:16, and 7:51.)

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  25. Laura is indeed only speaking to a small proportion of the total number of families - those who have the motivation, technical ability and time to reach out to people like Laura! You are right Anonymous CB (as opposed to CBUK i.e. Charlotte!) we really DON'T know what happens to the majority of families, what is the best way to treat these illnesses, if current methods cause iatrogenic harm, even how to define these illnesses. That is why those parents who CAN need to step up and join in the debate. I certainly couldn't when in the throes of unsuccessful FBT.

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  27. CB multi-time Anonymous: really?

    FBT is not families in charge. FBT is a method led by a clinician who gives the family the who-what-where-when-why and then empowers them to figure out the "how" of one part, guides and coaches them through it, and then coaches them through relinquishing that one part. The rates of success for that approach is high - 85% success as compared to the 30% in the general population. Parents don't come up with FBT on their own and few of us INCLUDING YOU AND I, NOTABLY, knew what to do or were able to empower ourselves to figure out how. We NEED professionals to be trained in this approach and we need parents to find and learn from those clinicians. In other words, professionals ARE in charge with FBT.

    As for my generalizations, I have to laugh because I was thinking the same thing as Marcella - heck, the parents I talk to are perhaps the most motivated and willing and able folks in the parent population. If you've got access to or some source for your idea that parents are usually instinctually re-feeding their kids and then doing Stage 2 and 3 on their own without professionals do let me know.

    And CB, this comment is just weird: "I don't think it is reasonable from this personal experience to conclude that no parents are able successfully to be in charge of their child's recovery without the involvement of professionals." Who said that? That's a dodgy debating move and kind of odd considering that our family pretty much DID have to go it alone. Of course people do the refeeding part of FBT on their own sometimes. My point is that we shouldn't have to. And that that's not FBT.

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    Replies
    1. 85% success for FBT you mean? Can you point me to a study? I have a hard time believing such a crazy number.

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  28. Laura, Do you agree that, as a question of fact, the vast majority of parents in the U.S. who seek professional assistance will get a provider who uses psychoanalysis, psychodynamics, CBT, or family systems therapy, or some ill-defined, eclectic blend of all or some of these approaches, to treat anorexia nervosa in their child or adolescent, and that they are not likely to be offered FBT?

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  29. Yes: absolutely. That is WHY we parents need to educate ourselves, seek out and digest a lot of information ourselves, and seek out providers who are well-trained and up to date.

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  30. Laura,
    What if there are no FBT providers in the community, and the parent can't travel to a distant location to work with one? Or, as is increasingly the case, all the FBT providers are completely booked and unable to accept new patients? What should the parent do? Use a profesional who is available, even though the approach will not be based on FBT? Or forego professional involvement and implement FBT on their own?
    CB-US

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  31. Well that's what we're all trying to fix!

    By spreading the word as widely as we can to parents that there ARE different approaches, that they CAN research and evaluate them, that there may not be local support and then let the parents decide how to proceed (travel, train their own team, do long distance support, travel to where support exists, do a short-term stint at a clinic that will help you devise a long-term plan, go it alone at home, choose what's on offer, or sit and stare at the wall...)

    On the other angle, we're getting involved at every level we can to influence the field to adopt standards, to get training, to offer training, and to question and call to account their colleagues.

    In addition, we're trying to educate the public and non-specialists and the media.

    Until recently there hasn't been collaboration OR outside criticism -- but both are needed.

    The one thing I DO NOT want to see is an us vs. them thing between consumers and clinicians. We need better clinicians, not to reject the whole field. We need to support and support and support those who are doing the right things.

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  32. Laura,
    One of the options you mention immediately above, for the parents who cannot access qualified FBT support, is to "go it alone at home." I agree. I'm afraid, however, that in order for that approach to succeed, it is important that the parents possess a considerable amount of self-confidence. In fact, some of the recent research suggests that parental self-confidence is one of the most important ingredients in a good outcome. That's why I responded as I did to another one of your posts, above, in which you wrote that it would be "silly and dangerous" for parents to be in charge, that "very few parents are in any position to do so," and that "most would risk dangerous harm to their children's lives and their marriages and the well-being of siblings." How can these comments about the limited capabilities of "most" parents be reconciled with the advice that "going it alone at home" is a reasonable approach? How does it bolster the self-confidence of parents when you tell them that it would be "silly and dangerous" for them to be in charge? I do think, as I said before, that you are selling parents short.
    You and I disagree on this point, but it's not personal. We just have different perceptions. Perhaps some day, researchers will be able to determine the rate of success when parents go it alone at home. That would be an important study. There is some data suggesting that up to 50% of patients with AN do not receive any intervention by professionals. What is happening to them? Are they being successfully treated at home by their parents, and we just don't hear about it? Or are the results disastrous? Unfortunately, we just don't know.
    Regards,
    CB-US

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  33. It is silly and dangerous to recommend that families stop consulting professionals.

    You are using FBT data to discuss "going it alone" and they are two completely different things. Parents refeeding at home without professional support is not FBT. It is sometimes necessary but its risky and frightening and can have horrible results. If it goes wrong - and I do see this happen - families are in a worse position when they seek care and some are punished for it or even lose custody of their kids.

    I'm NOT going to recommend it as a policy. It is something a family may choose among the alternatives but should do so with all the information in front of them including the risks.

    My work is all about keeping families from having to do that: we deserve to have a medical and clinical system that helps us and need to understand that and demand it.

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  34. Tetyana,
    Laura's reference to an 85% rate of success with FBT is not weird. See Eisler, Family and Individual Therapy in Anorexia Nervosa; A Five Year Followup, Arch Gen Psychiatry 1997; 54 (11): 1025-1030 (1997)
    http://archpsyc.jamanetwork.com/article.aspx?articleid=497962
    Go to that web page and click on the PDF icon for the free, full text of this study.
    As shown in the experiment, after 5 years, 90% of the patients who developed AN before the age of 18, and had been ill less than three years, experienced a good outcome, and only 10% had a poor outcome. By contrast, of the patients who received individual psychotherapy, 36% had a good outcome, 18% had an intermediate outcome, and 45% had a poor outcome.
    CB-US

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  35. CBUK here. (I do think that this particular moniker makes me sound like one of those rodeo mechanical bull machines......)

    I have blogged what *I* think are the 6 important points that EVERY clinician should know, whether an eating disorders specialist or not.

    Perhaps a start?

    http://charlotteschuntering.blogspot.co.uk/2012/07/what-every-doctor-should-know.html

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  36. One of the reasons given by clinicians for not implementing research into their practices was that they "don't have the time to read research papers." http://www.eatingdisordersreview.com/nl/nl_edr_23_4_1.html
    Do they realize that people die from eating disorders? Is it too much to ask them to take the time? What kind of a profession is this?

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  37. Er....Sorry....you know you said that stuff about an "us vs them" thing. Well, I ignored you in my latest blog.

    But, but but I did go for the "outside criticism" thing.

    xx

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  38. Tetyana,

    The data on FBT is pretty reassuring. (and more has come out in the past few years) It's far better than for anything else, notably. That isn't to say it works for everyone or should be imposed on people. The backlash against it has always surprised me as it has never been promoted as the be all and end all, or for every situation. That criticism comes from people who misunderstand the data, have prejudices against the ideas in FBT, and who think that when someone says "evidence-based" they mean anything more than there is some data on it. The backlash is very telling, as THAT is where you hear the extreme claims for FBT - not from the proponents.

    If I say to someone that FBT is evidence-based people without much science literacy respond with "well, it doesn't' work for everyone!" But that's not what I said. This is usually followed by "Well, it wouldn't work for ME," which may indeed be true but doesn't say anything about the data.

    I believe the backlash is about paradigm change and fear and lack of science literacy. If so, it will pass. There are legitimate criticisms about FBT - I have plenty of them - but we haven't even gotten to that point as people are still stuck on the "Well, it wouldn't work for me!" response.

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