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Friday 17 August 2012

Did I miss anything?



Having been off the grid for a while, I wondered whether I had missed anything in the very tiny world of on-line eating disorder debate.

The answer seems to be no.

As ably demonstrated by the comments section of this blog, there are those who continue to resist any attempts to see the world from beyond the narrow confines of their particular experience.  If this is the first time you have come across this anonymous "commentator",  I can assure you it is always the same subjective argument, couched in vaguely different language every single time.

Now I have met many patients with wildly differing views from my own on the internet over the past three years.  As a result of listening to them and interacting with them, we have, in some cases, become really good friends in the "real" world.  Others I have failed to agree with on any level but have enjoyed a sparring match, tinged with humour and retired gracefully.  Others still (like T of the Science of Eatings Disorders blog) have totally blown me away and I am scared to interact with them because they are so clever.....

The thing is that we have all changed and broadened and grown as a result of interactions.  We have all tried to find common ground and we all seem to have a purpose: that of furthering the cause for better treatment of eating disorders patients.

Continuing to blame ALL parents, because yours were crappy is, of course, your choice.  Expecting to convince other patients and parents that you are right is becoming less and less of an easy ride, as science and research move on.  Perhaps you could put your hand to better use?  Try getting it to hold out a cotton bud and clean out your ears.

19 comments:

  1. Interesting. I can't say I've come across anyone who insists on blaming ALL parents. I don't recall seeing that anywhere. Can you point out who said that, and where?

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  2. Just try typing "Parents and Eating Disorders" into Google and reading the scholarly articles.

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  3. Are you saying there are scholarly articles that aim to blame ALL parents for eating disorders?

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  4. There are plenty of articles that purport to be scholarly and that blame all parents. For example, Craig Johnson wrote a book in which he said:
    "A number of investigators have observed that mothers of classic restricting anorexia nervosa patients are domineering, intrusive, overprotective, and overtly or more subtly discouraging of separation-individuation." Johnson, Psychodynamic Treatment of Anorexia Nervosa and Bulimia, p. 169 He did not say some, he said all. Mr. Johnson is founding editor of the International Journal of Eating Disorders, a founding member of the Academy for Eating Disorders and Eating Disorders Research Society, and past president of the National Eating Disorders Association. He is currently Chief Clinical Officer of the Eating Recovery Center in Denver, Colorado. His writings pretty well sum up the mainstream view among eating disorde professionals.
    Did I mention that a majority of eating disorder professionals have themselves a history of mental illness? Warren, A Qualitative Analysis of Job Burnout in EAting Disorder Treatment Providers, Eating Disorders, 20:175-195 (2012) That's why parents need to be very careful in their dealings with this profession.
    CB-US

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  5. CB-US We've had this debate elsewhere but here goes again. I really can't let the allegation that a history of mental (or any other kind of) illness necessarily means that a professional cannot be trusted. Yes, people whose current illness makes them unfit to practice should be allowed time for healing away from the workplace whether that illness is cancer or bulimia and, for that matter, whether the workplace is a therapist's office or a coal mine but I would hate to see an environment where people with a history of one illness or another were barred from work. After all one of my own children has had a mental illness, and I believe one of yours has too.

    As for the theories that parents cause eating disorders, yes, that quote makes for fairly unpleasant reading, especially if you brave the rest of the next two pages and have to put up with all sorts of mother-blaming (fathers get off lightly, or perhaps they are dealt with in the pages that aren't available free on google). I do note that the book was published 11 years ago and that the work quoted (Bruch, Crisp et al) is even older. Newer work such as that of Eisler has contradicted such views and some clinicians who started out blaming parents have now changed their minds and are prepared to admit this. I believe that Johnson may be one of these and if so I thank him and hope that his future work with, rather than against, parents may bear fruit for him and more importantly for the new generation of sufferers from these awful illnesses.

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  6. Marcella,

    I actually do not consider restricting-type anorexia nervosa in
    athletes to be a "mental" or psychiatric disorder at all. Due to unintentional energy imbalance and resulting loss of weight, these individuals suffer dramatic changes in the biology of the brain. The condition is best described as activity-based anorexia. It is purely biological. It exists in animal species and has been demonstrated in the laboratory. These individuals merely suffer from the consequences of semi-starvation. Of course, the consequences of semi-starvation include psychological changes, including temporary alterations in mood and personality, as we learned in the Minnesota Starvation Study. Added to the effects of semi-starvation are the mood and personality changes associated with high levels of athletic training, triggering a condition known as "overtraining syndrome." These athletes are not fundamentally suffering from a mental or psychiatric disorder. They did not suffer from a pshcohological disorder before they became unintentionally semi-starved. They do not need or benefit from talk therapy with a psychiatrist or psychotherapist. There is nothing wrong with their families. The families do not need an eating disorder professional to be a third parent. Most of these individuals do not suffer from a "co-morbid" condition. What these patients need is nourishment to feed the starving brain, and rest to allow the body to recover from athletic overtraining. These people generally recover completely and go on to lead happy, rich lives. On the other hand, I don't know very much about binge-purge anorexia nervosa, bulimia, or BED, so I have no opinion on them. They may be mental disorders; I don't know. If you say they are, I'll take your word for it. I think it's a mistake, however, to lump all these conditions together and assume they are all "mental disorders."

    I did not say that a history of a mental disorder necessarily means that a professional cannot be trusted. The fact is that no eating disorder professional should be trusted. Don't assume anything they say is accurate; ask for evidence. If the evidence isn't there, the statement is a product of their own imagination, and nothing more. If their mind has a history of a mental disorder, then take that into account. I wouldn't "bar" them from working in the field, but I would require full disclosure to parents. I also think that a history of BP-AN, BN, of BED should probably disqualify someone from being involved in the treatment of a patient with restricting type-AN, unless, or course, the parents feel otherwise. I think parents should interview with great care any former eating disorder patient who is now proposing to be a treatment provider. I would want to give them a battery of psychological tests first to evaluate their psychological health. I would give them tests to determine whether they are fully recovered or not. Knowing what I know now, I probably would want to evaluate their family members as part of the assessment.

    I have never seen Craig Johnson retract his statement about mothers. Perhaps somebody could ask him to do so when he speaks at the F.E.A.S.T. conference in November. He continues to promote the book in which he made the statement. The book can be purchased on Amazon. Buy a used copy so you don't support the author. The book is hilarious; highly recommended for laughs.
    You say some professionals are "prepared" to admit they were wrong about parents. I'll take your word for it, Marcella. I guess preparation is one of the early steps in the "stages of change."
    CB-US

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  7. Scared?! What the F? I'm just a ranty, opinionated (science nerd (who is often wrong) and who happens to have an eating disorder and spend a bunch of my spare time blogging. I want to be accessible - not someone who comes off as being too clever or too, I don't know, not within reach? I don't get offended easily and I've learned a hell of a lot in the last few months of blogging. So, any interactions with people who have different viewpoints, opinions and experiences are amazing - it is what I want to have, because I know what my experiences and opinions are, I want to know what others have experienced and what they think and feel.

    (I'm really not that clever, but thank you for the compliment!). You can add me to skype, btw.

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  8. I hope that people will respectfully but clearly challenge Johnson, and via him the whole field, on those statements at the F.E.A.S.T. conference and at every other opportunity. The F.E.A.S.T. conference will be a better opportunity to do it as it is devoted entirely to parents rather than being a bolt on at the end of the day when most clinicians are checking their tickets home. One of my frustrations in the field is that many clinicians simply aren't bothered at all about parents either way - they concentrate on the patient in front of them (good) and simply ignore the fact that he or she will spend the vast majority of life with family or friends rather than in the "therapeutic environment" whatever the home situation. They're happy to repeat worn outdated statements about parents secure in the knowledge that they won't be challenged because there won't be anyone in the audience who is that bothered either. That's why I think it's vital to keep knocking at their doors, keep turning up at conferences, keep meeting with clinicians and listening to them, and why I applaud those who are prepared to come to us.

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  9. CB-US On the question of whether restricting type anorexia in athletes is an eating disorder at all you make an interesting point. In her previous post Charlotte mentioned the lively discussion going on on facebook about the work of Christopher Fairburn. His transdiagnostic model of eating disorders holds that weight and shape concerns are a core feature of eating disorders. I challenge this and asked about people without weight and shape concerns in a meeting with local clinicians who use the work of Fairburn extensively. The example used by the therapist who answered was one of a patient who was an athlete who overtrained. She was weight restored in the early phase of treatment (CBT-E, rightly in my opinion, places all the initial emphasis on establishing stable eating and, where necessary, weight restoration, although, unlike with FBT the responsibility for complying with this is with the (adult) patient rather than the parent) whereupon any other issues dissolved and she was able to leave treatment, cured, without having to do the 10 more weeks of talk therapy. I am very pleased for the individual concerned most importantly because she is recovered and because she was fortunate enough to get past the initial screening to get treatment, and to find a therapist who realised what was going on and didn't keep her in the sick role after she had re-established feeding. Had her parents been able to successfully diagnose her on their own, recruit medical and social help and/or re-feed on their own she probably wouldn't have needed the diagnosis at all but, as yet, there is no dedicated help or guidelines for people with restricting athletic AN, at least in the UK. Maybe the athletics world should develop some, separate from the mental health services.

    This would leave the rest of us who do, or whose loved ones do, have recognisable mental illness in addition to, or as a result of, an eating disorder or for whom an illness which causes grave distortion to mind (body dysmorphia, depression, agitation, suicidal ideation) and behaviours (restricting, binging, cutting, running away, raging, suicide attempts) is so obviously a "mental" one that we have to resort to banging on the doors of the asylum trying to be let in and get some help and relief. We don't have the luxury of time to interview and give psychometric tests to the people to whom we have to go to get care for our loved ones. In the case of staff in the emergency room or police officers sent out to look for a runaway we'd probably be prosecuted if we tried. Maybe we're a different species of parent from those good ones who haven't caused their child's over-training. Maybe, if our children have pre-morbid conditions as mine did, we HAVE caused them, at least by passing on an unfortunate combination of genes and not being able to give the individual the right kind of support to deal with anxiety or obsessionality in their early years. Certainly it means that we are less well equipped than you obviously were to help our children on our own, both because of their extreme behaviours and because of our weaknesses (diagnosable mental illness in our case) as parents. I hope though that it doesn't mean that our children, or we as parents, are beyond help.

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  10. Continued....

    the help that we have found most genuinely helpful is that which actually listens to the whole family, professionals who take time with ALL of us, who don't make assumptions either about bad parenting or about ability to perform heroic parenting, who treat us as individuals, who take a full medical and social history. Some of the people who have done this successfully have, in their past, made statements that could be considered blaming. All of them have been mature enough to have been "brought up" in the world of Bruch, Crisp et al. It's a history that the field has to live with and continue to learn from. Those who have moved beyond the history, have stayed in the room at the end of the conference to talk to parents rather than rushed to catch the earlier train, have learned to enjoy interaction with families, have managed to give us both hope and practical help and I thank them.

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  11. ok just one thing I have to say - what on earth is the reasoning behind barring professionals with a history of ANBP, BN or BED from treating AN-R patients? would you not apply this restriction the other way round? and if you would should clinicians only treat patients with the disorder they experienced? or the symptoms? also, AN-BP and AN-R have far more in common than AN-R and BED. not to mention that the vast majority of AN-BP patients have themselves experienced AN-R and the refeeding process is, physiologically, effectively the same.

    small point but really confused the hell out of me. esp as you say, Anonymous, that you have little to no experience with any of those illnesses.

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  12. According to research conducted at the Institute of Psychiatry in London, people with a history of an eating disorder suffer from a variety of social, emotional, and cognitive problems. These difficulties persist even after recovery. http://www.ncbi.nlm.gov/pubmed/22803934
    Why, therefore, should parents hire a sufferer or former sufferer as a tretment provider? Isn't it better for parents to do the treatment in the home?
    CB-US

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  13. But but but Mr Bond (!), many of the personality traits that can predispose someone to an eating disorder are, in recovery, extremely good personality traits to have for a caring profession - sensitivity, attention to detail, focus, etc etc etc.

    No it is not "better" to do the treatment at home. It is extremely traumatic for the patient and the parents to treat a mentally ill patient at home, with no clinical back-up. Remember I speak from experience here.

    There SHOULD be proper, evidence based treatment approach options as a matter of course. There SHOULD also be alternative treatment approaches for those who cannot "do" FBT or for whom it does not work.

    xx

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  14. I think CB-US has made it pretty clear that he thinks therapy from outside individuals was harmful to his family and that he feels many parents can deal with the situation, perhaps particularly when there are no premorbid conditions or problems adequately at home without resource to psychotherapy.

    Actually I agree with him. There probably are. Whether these families contain people who actually suffer from mental illness is a moot point, and probably not worth arguing - the family member is sick, the family gather round him/her to protect and re-feed, the family member recovers, hooorrrrraaayyyyyyy!!

    Most of us however who get to the point of seeking out websites and debating on blogs need some kind of additional support. That may be the cheerleader type support that happens with FBT where the therapist doesn't advise, meerly encourages the parents to use their own strengths to aid their child. It may be the medical security of inpatient where the very real medical needs of the family member are tended to by specialist doctors and nurses. It may be outpatient CBT-E or nutritional advice whereby the patient works with the professionals and the parents cheer from the sidelines, it may be daypatient where the patient, or his or her carers, or both, share the responsibility for day to day care with the staff. ALL options and many in between are needed in our armoury to fight these illnesses.

    As to who should staff them, I'm quite happy not to have the responsibility of recruiting staff, managing them, training them, yes, paying them directly. I am relieved that the NHS does this for me, with the safeguards of whisleblowing policies, complaints procedures etc. available to it and to me if there should be concerns. Where would it end? Should my daughter be ever allowed to work in a caring role at all? She's pretty good in a supported environment with young children and is looking for a job as a classroom assistant, should she give up? Should my health service employers who employ me in an administrative role be able to discriminate against me because I have a child with an eating disorder? If so why? Because it is likely to take a great deal of my mental and physical engery which I could be otherwise spending on my job (totally true), because I must have some character fault which has caused my daughter to have an eating disorder and I might infect the patients whose notes I file (absolute rubbish) or because, eating disorders being largely genetic, I might get one in the future and be a bad bet health-wise (hmmmmmm)?

    With one exception I have no idea whether any of the people so far who have treated my daughter for her ED have had eating disorders themselves, either in the past or in the present. I'm guessing that some of them have (but haven't been unwell or they would have gone off sick even more than they usually did) and most of them haven't. Either way it has made no difference to the way we (as in both her as an individual and we as a family) have been treated. What has made the difference has been the willingness of the professionals to take a detailed history, to try to see the whole picture, to treat us as individuals and the ED, not us, as the problem, to get off their hobby horses (whether those be of parent blaming or "FBT is the only option") and adapt to what we were saying not what the tick sheet said we should say. The person who I know had had an eating disorder in her past was one of the better ones at this not because of her history with the ED but because of her history with us - she knew us as a friend before the ED and was therefore able to give valuable knowledge and support to us as someone who didn't have to repeat the same old boring questions before getting on to the treatment session. She was also a person who paid a great deal of attention to detail and had extremely high standards - pretty vital in a doctor I'd say.

    Marcella

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  15. CB - a) I agree with Charlotte, and b) my question was over the distinction you made between subtypes of the disorder not whether or not former sufferers should be allowed to be treatment providers. from the sentence I was referencing it seemed like you thought former sufferers of disorders with a bingeing component made poor treatment providers for AN-R sufferers (and maybe vice versa? I wasn't sure what you meant)

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  16. I can't decide whether to laugh or be angry so I've decided to laugh. That parents will observe a terribly serious and terrifying change in their loved one, know instinctively and without professional help what to do, execute this task without objection from other adults and medical professionals who note the issue, and then go on merrily with life is, well, a very nice story. Also: absurd.

    Not because parents are incompetent or professionals are dangerous but because the only parents who have the luxury of such reflections are ones looking BACK, as you are.

    As for whether we can divide out the particular eating disorders and do mental health evaluations on providers.... oh, such fanciful reveries you have! What are you smoking: do share!

    Perhaps those of us offering opinions on these issues should submit to mental health professional evaluation before anyone listens to us? Oops: we can't do that since being a mental health professional disqualifies them from being taken seriously. Oh, dear.

    Nonsense. Excuse me while I go devote my time to helping parents find the BEST professional support and getting health systems to adopt the best methods and changing public opinion toward evidence-based information instead of sitting in a corner alone dismissing EVERYONE and helping NO ONE and hurting the very people who should be one's allies.

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  17. Charlotte,
    I agree it is traumatic to treat a sufferer at home. It is even more traumatic, however, when you are dealing with not only anorexia nervosa but also a mentally ill treatment provider at the same time. Trust me.
    CB-US

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  18. I have decided on the passive, resigned approach. Quite frankly, I am shocked by the prejudice. I have had depression - two bad bouts. Does this mean I too, should have a "battery of psychological tests" to see whether I am "fit" to take charge of my daughter's care? Her mental state does veer towards depression......

    I am sorry, Mr Bond, that you had a terrible time with a provider, whom you felt was not well enough to be in charge of your child's mental and physical welfare. But you can't tar everyone with the same brush. Should oncologists be barred or tested, if they get cancer? They just might project their own experiences on to that of a patient, after all - and I mean the mental stuff as well as the physical.

    I understand your passion and your "enthusiasm" but this is beginning to smack of a witch hunt to me.

    xx

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  19. No. You are the mother. You should not be evaluated to see whether you are fit to take charge of your daughter's care. You are.
    However, you WILL be evaluated as soon as you present to a professional a child for treatment for anorexia nervosa. This is strange, and there is no good reason for it. Nevertheless, it is standard practice.
    Next time a professional questions the mother's suitability to lead her kid's recovery, the mother should ask the professional whether she or he has ever suffered from a mental illness. Most have. See Warren, A Qualitative Analysis of Job Burnout in Eating Disorder Treatment Providers, Eating Disorders, 20:175-195 (2012) (Survey of 296 eating disorder professionals; 157 (54%) have a history of a mood disorder.) Draw whatever conclusions you want from this data. I think parents should be aware of it.
    CB-US

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