We treat older patients

Bringing back something from yesterday's post, and reframing the illness.

"We treat adults" A lot of the resources of eating disorder treatment are going to adult patients - often with intractable illness. Much of the literature and research and public attention is to adult patients who have been ill longer, have suffered more complications, have worse support systems, and spent years studying their illness and theories and approaches. I am seeing more than ever lately how this biases what the eating disorder world thinks eating disorders really are.

To me this is like oncology being the study of cases that have metastasized.

Eating disorders generally appear in childhood or adolescence. They may be sub-clinical and they are often undetected, but that's when they start. That is when treatment should begin. The illness as seen in adults could be, and I would argue SHOULD be, regarded as complicated by failed treatment or failure to intervene. When the illness has time to take hold, change personality, alter personal history, ravage relationships, it is not the original illness any more.

What's more, a person who grows up marinating in the brain state of an eating disorder may even get BENEFITS from being ill that complicate recovery. Think of the parade of celebrities and athletes who later reveal eating disorders and how their behaviors or symptoms made them thin, driven, focused. Because eating disorders hijack one part of the brain and leave others intact, like intellect, people can be very successful in many fields and financially independent. The only reason they even get the opportunity to be on the podium being listened to on the topic is the success that their illness made possible.

Meanwhile, we mistake the misery and disconnect and medical risk as inherent to the illness. We need to acknowledge that adult patients are not different from pediatric patients in the core illness but because they've been ill longer and we now have less ability to intervene. Let's begin to define the illness as it present in children and adolescents and the rest as our failure to intervene early enough, and well enough.

Early intervention is the best bet we've got, and an opportunity we routinely fail as a society. Of course we need to treat older patients, but the best way to do so would be to keep younger patients from staying ill. I would like this to be the last generation where there ARE so many adult patients.


  1. Wow! So true. I also think that this may be the last generation where there are so many adult patients because those of us who parented children (now older adults still fighting the syndrome) with ED didn't have the knowledge/medical resources available when the timing was critical and, I might add, there are still therapists who believe that the behaviors are totally related to a starving brain. In my daughter's case this was not so and I struggled against this mindset for years until she connected with two psychiatrists who figured this out. Those of us who have witnessed this transition are in a position to champion your work and that of others connected with the Eating Disorders Coalition to make certain that care (comprehensive and early) is available and that parents and their children's doctors are educated early, too!!!! Thank you.

  2. Laura, as an advocate of Maudsley and of early intervention, what treatment do you propose for the approximate 50% of teens who do NOT respond positively to Maudsley and so end up as 'failed treatment cases'?

    Also, who do you 'blame' for Maudsley failing to work in non-responders: parents or patient?

    You have repeatedly said that the patient cannot be blamed because they have a (reversible) brain illness that controls their mind. In accordance with your stance that patients' co-morbid difficulties are caused by the AN, these co-morbidities cannot be 'blamed'.

    So that leaves the parents to 'blame' - who have perhaps given up their jobs to treat their child (via Maudsley) but have been unsuccessful.

  3. Cathy, you misread me!

    First of all, what's this about blame?

    Second, I do not believe co-morbid issues are caused by the AN - some are artifacts of malnourishment and some are pre-existing or concurrent. Anxiety disorders, for example. Aspergers.

    We need to distinguish "fail to respond" to re-feeding and "fail to accomplish re-feeding.

    Maudsley is a way to mobilize a family to do safe re-feeding and stabilization at home. If the parents are unable to do this - and many are not - then there need to be alternatives that are just safe and effective. It's incredibly hard work but most families don't have a choice: there ARE no other alternatives - except letting a patient's illness continue to run the show.

    I don't get the "blame" thing, though. If the best dialysis method was in-home treatment administered by parents then would we "blame" a family that couldn't manage it?

    I certainly don't "blame" patients and although some parents may indeed just fail to try I assume they're doing their best. The responsibility for making that approach work is largely on the professional team: to train and monitor and to identify an alternative if it is not working. But even then I'm not "blaming" the professionals - they're doing their best, too.

    The only "blame" I can truly point to is to ED. It's a very very difficult condition no matter what. There are no perfect answers or easy solutions. All any of us can do is our best - and seek the best help.

  4. Thanks Laura... I guess that a better word for me to have used would have have been 'attribution' rather than 'blame'. (I wrote 'blame' in inverted commas because I didn't mean it literally...).

    You have answered the question I wanted an answer to in writing about the need to differentiate between 'fail to respond' and 'fail to accomplish re-feeding'.

    Tell me if I am wrong, but the gist of many of your posts (at least my interpretation) is that you have tended to assume that if people don't recover in their teens, or even their 20s or 30s, it's because they were not adequately re-fed. That is to say that the symptoms of AN are almost wholly attributable to starvation, which plenty of research has indicated is untrue. 

    As someone who was deemed a chronic patient I know rather a lot of older people with AN. They have been re-fed to full nutrition repeatedly, but have still relapsed - sometimes after remaining at a healthy weight for a number of years. They often do have a history of trauma and/or co-morbid condition that feeds directly into their AN, or for which AN feels to be a 'solution'.

    I'm glad that you recognise that some people don't respond to re-feeding alone. Such people often don't get better, even with re-feeding, unless they have a therapist who will help them tackle 'underlying issues' for which they use AN as a 'coping strategy'. (And I know that the two latter phrases are disliked by many FEASTERS...). 

  5. Cathy,

    My whole point is that after refeeding some people DO have other issues to address or special issues that will draw them back to relapse.

    Refeeding once isn't a treatment. Refeeding is bailing out the boat, but without patching the holes - if any, and staying out of high seas, and learning to pilot it properly you just continue the torture.

    Yes, I believe the symptoms of even minimal malnourishment can be - for those with this predisposition - massive brain disorder. But the point I keep trying to make is that this needs to be separated out from the other things so we CAN personalize treatment.

    Not all patients have other issues or even the same symptoms of malnourishment (you, for example, didn't have body image distress). But ALL eating disorder patients need full normalization of the body and brain in order to "bail the boat."

  6. I am not certain if full refeeding/early intervention is going to completely STOP adolescent/child AN patients from becoming adult sufferers.

    There are more variables in the equation and simply weight and refeeding. It is true that giving children with AN a chance to experience a long stable period of weigh restoration is the best way to facilitate recovery -- however, I would argue that (as Cathy pointed out), this is not going to "stop" the influx of adult patients, though it may lessen the number.

    At the moment, I would argue that refeeding IS an integral part of most reputable (not crazy alternative centres) treatment programs ESPECIALLY for pediatric patients and we STILL have adolescent patients become young adult sufferers.

    I would also argue that many hospital programs (at least in my experience) tend to be MORE strict with their pediatric patients (higher readmission weights, higher discharge weights, less tolerance for weight loss) because weight is a moving target and childhood years are so important to growth/development (both psychological and physiological) and therefore many children DO experience long stable periods of weight restoration.

    Given what we know about the AN brain and anorexic predisposition I think there needs to be some maturity on the part of the patient to understand the steps that need to be taken to stay healthy. Refeeding is essential to help the individual realize this point ("bail out the boat" as you said) but refeeding WITHOUT this realization leads to relapse. . .

    Some children are too immature or do not have the foresight to understand why starvation/restriction may feel good or why it is important to stay healthy. They may not believe that there is a benefit to giving up AN as a "coping mechanism" for stress, etc. There may be no ability to think ahead as to the negative consequences of their actions.

    Perhaps change will come when we cannot only refeed AN individuals but teach them to care for themselves and monitor themselves in the same way a diabetic or epileptic child would take responsibility for their own health.

    Children who cannot do this (and most cannot because the brain is still developing) become sick adults. Recovery rates improve in adulthood (early twenties) because there is greater ability to realize that AN is harmful, etc. It may be that some children need to reach adulthood with AN to "put it away" so to speak.

    The best that can be done for a child may be refeeding and weight restoration -- but this may not prevent the necessary relapse in adulthood.

    I know its an alternative way of thinking, but just some thoughts.


  7. Thanks again Laura.. I agree that re-feeding is 'bailing out the boat' - and it is essential that people are re-fed where possible to avoid the terrible physical manifestations of AN. I guess where we differ is that I do see AN as a complex illness, and not just as a brain disorder elicited by energy deprivation in people with a 'vulnerable' brain.

    At present we have NO firm evidence that AN is a specific genetic disorder. And if it is genetic, it is most likely mediated via temperament/character traits rather than a specific genetic defect. I read the paper you referred to last week on chromosome 13 and it is very hypothetical and inconclusive. It doesn't say much at all.

    But what I do agree with, is that parents can sometimes be instrumental in assisting their child's re-feeding. And I think it's vital that parents have somewhere to turn to for mutual support and discussion when they're dealing with a sick, anorexic child.

    I also think that A:) raises some good points above...


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