Is compliance the active ingredient?

Here's something you probably don't expect me to say: I'm disappointed by the recent Maudsley data as much as I'm pleased. In the optimistic glow of recent good press it must also be noted that it is not all good news. When I first saw preliminary data in London in February I braced myself - this is not the 85-90% success rates of earlier data.

Doubling expected success rates is absolutely wonderful. Considering where we're starting from, and the lack of alternatives, IT IS STILL THE BEST WE'VE GOT. Treatment "as usual" out there - and the majority of people with eating disorders don't get any treatment - has dismal success rates: about 33% fully recover.

It's bizarre that people see this research and say "well, it doesn't work for everyone so let's apply this knowledge to only a small group." I see it and say "we need to make whatever is working in this stronger so it will work for more people."

And I ask myself, as usual, what is the "active ingredient" of Family-Based Maudsley - or ingredients? It could be, as I hear others say, the changed stance of the family, or the alliance with the clinicians, or the lack of blaming of patient or family, or the power of family cohesiveness. But I think it is compliance with eating and food behaviors. No other treatment approach focuses on that except residential, which at most offers six months of compliance - almost always far less.

Parents keep their dependent kids eating and in therapy.

If compliance with eating and behaviors is the active ingredient that doubles recovery rates then this can be generalized to more treatment. It could become normal for eating disorder patients to be relieved of responsibility for food and choices about activity levels or compensatory behaviors. It could become normal for patients, once diagnosed, to be monitored indefinitely and hospitalized or taken care of at home as needed - no more repeated weight loss and going back to behaviors. If this is the active ingredient it might be separated from the issue of what other treatments are being offered and used concurrently: CBT, DBT, CRT, IPT.

Compliance with nutrition and ED behavior plans could stop being an idea that is only used in children and in emergency inpatient situations. I wonder how the success rates of ALL therapies would rise if this one active ingredient of ONE - FBT - was expected across the board?


  1. Laura

    I couldn't agree with you more.

  2. I think the Australians at Westmead were looking at FBT to find the active ingredient. As far as I could understand they were overlooking the obvious, the food. I wonder whether James Lock et al can further analyse the data they have already have to try to see what they think the active ingredient is.

  3. "When I first saw preliminary data in London in February I braced myself - this is not the 85-90% success rates of earlier data."

    Not really. The results of the recent RCT are in line with earlier studies of family treatment. What appears to be a discrepancy results from using more stringent outcome measures. Earlier studies used the Russell Morgan criteria and 85-90 were in the good category. The new study's standard for full remission was higher. When full remission and partial remission (see figure 2 in the published study) were taken together (which would be comparable to the Russell Morgan good outcome) the results are similar to earlier studies. Of course, full remission is the goal. It's to the researchers credit that they set a high standard. But this study is not less successful than earlier ones at helping people with anorexia.

  4. I agree with Marcella that it would be helpful if we could determine an 'active ingredient' of successful therapy - but for ALL the treatments that work for the 33% of AN patients who do make a full recovery - not just for the patients who recover via Maudsley. Clearly Maudsley works for some and not for others. The question is WHY? But it is also true that some patients benefit from 'treatment as usual'! I know of patients who recovered fully who were given therapy BEFORE re-feeding.

    I think I know the answer to the question of why some people benefit from one treatment and others from another - and it is that not all patients with AN are the same - in personality, in support network from friends as well as family, in the triggers for their AN (and I do believe in triggers...).

    I think too many researchers make the mistake of viewing AN as a homogeneous illness when it is not. Yes, the behaviours may be the same, but if you ask patients WHY they do those behaviours (or started to do them) they will come up with different reasons. The meaning of the illness to the patient is important - because AN is (in the main, or at the outset) egosyntonic.

    I get a little frustrated when AN is viewed simply as an illness caused by starvation in people with a genetically vulnerable brain. It IS more complex for some (perhaps not all) people. If recovery were as easy as simple, sustained nutrition, more patients who were fed to full nutrition would not relapse as they do. And some patients remain weight recovered, but still live with disabling thoughts and emotions day-by-day. Sometimes they exchange ED behaviours for self-harming, or drinking, or taking drugs.

    Agh, I hate it when I feel I am 'throwing a spanner in the works'... I don't mean to be difficult/pedantic/whatever; hopefully just realistic. I think it would be a nightmare if Maudsley FBT (not necessarily New Maudsley) were to become the blanket and only available therapy.

  5. Thank you SO much for the explanation and analysis! Very helpful!

  6. Cathy,

    I'm not talking about Maudsley being for everyone, I'm talking about compliance with re-feeding and eating behavior normalization as the active ingredient that could be applied to all treatments.

    FBT is just one way of getting compliance, and it doesn't always work. Re-feeding doesn't always - or even most of the time - miraculously cure patients. But re-feeding and normalized eating are the one thing that need to happen for all patients, I'm sure you would agree.

    We can disagree on how, and we won't argue about how flipping difficult it is, but what I'm proposing is that it should be the expected goal for ALL patients regardless of what treatment and what other help they need to live full lives.

  7. Hi Laura, I do agree that combined refeeding, weight restoration is essential, at least to prevent the physical devastation accompanies years of semi-starvation. I'm not sure that this always leaves people with a healthy and happy mindset, but if they're physically healthier then they may have a better chance of living a more fulfilling life.

    A problem in many research studies is the outcome measure used: usually weight and/or something like EDE-Q, which focuses on fat phobic AN only. Surely the important outcome measure is quality of life (QOL)?

    QOL is likely to be better in people who are physically healthier, so re-feeding makes sense. But some patients are near impossible to re-feed - and the more frequently they are coerced into re-feeding the more traumatised they become.

    Now, I'm not talking about myself here. I wasn't re-fed to full nutrition in my teens and was more-or-less neglected in my 20s and early 30s. This is not personal. I'm talking about the many patients who re-feed (often under duress), then relapse - again and again and again. Such patients comprise approx. 30% of the anorexic patient population.

    What is difficult is the practicality of re-feeding such individuals; i.e how it can be done without bullying or threatening the patient? Maudsley FBT requires that the child is looked after nearly 24/7 by a parent. What if parents simply cannot afford to give up work, or they give up work to be a full time carer using Maudsley FBT but the kid still doesn't get better. It's a big rusk that could end in bankrupcy for some families.

  8. Lol, I meant 'risk' not 'rusk'... Wonderful pun though :D

    Teaches me not to try to type comments with my phone again...

  9. Cathy

    Often whilst refeeding my daughter, I asked myself the same old question. "What would I do if my daughter had cancer?".

    Would I give up my job? Would I sell my house? Would I give up everything I had to make her better? Yes, of course I would.

    Why should it be different for an eating disorder? It is, after all, a lethal psychiatric disorder. There should be no shame attached to it, no apologies made. Why should anorexia be perceived as different from teenage cancer?


  10. I take your point Charlotte... My Mum gave up her job so that she could try to feed me at home (she collected me from school at lunchtime). I felt really guilty that she did that, even though I obviously didn't 'choose' to have AN. I felt bad that she was doing that for me, yet I couldn't comply - because I was terrified of life outside of all my rituals.

    Out of interest, does FEAST have any data relating to parents who have tried but been able to help their child? What is recommended for such families?

    My Mum and I have talked about this a lot recently. I regularly go round to eat with her, and I now love eating what she cooks for me. But things were so different 30 yrs ago. She gets quite upset and always says "I tried my hardest with you; really I did, but you were totally rigid." that makes me feel awful - that I inadvertently caused her so much grief...

  11. Charlotte,

    I like your analogy up to a point. But at least here in the UK (I know that the situation in the US is way different with perhaps better treatment but many, many families mortgaging themselves to the hilt and beyond to pay for it) would you not be mightily concerned if you or your neighbour had to pay up front for cancer treatment (£650 per day or more), or indeed if you were told "chemotherapy is the best medicine, but we're not going to tell you how to administer it, go away and work that out for yourselves, After all, you are her parents, you know her best".

    I agree with Laura's point. ALL treatments should include weight restoration and stabilising of eating behaviours. Over half of the subjects in the best randomised controlled trial yet responded well to its administration with FBT. Let's rejoice, and get working on what to do with the other half.

  12. perhaps the reason the maudsley method works for some, is that the active ingredient is objectively and actively caring. Perhaps the difference is that in some cases, the support teams and family members are more caught up in how having a friend/family member with an eating disorder effects them, instead of truly caring about the person with the eating disorder and their struggles to recover.

    Perhaps the difference is between a truly selfless support team/family, and a truly self involved support team/ family. Without a selfless support team, the patient would only spiral further into the disorder perhaps ending up worse than before.

    Point being some families/support teams are so caught up in how they are effected by having someone they care about be sick, that they no longer see clearly to how their attitudes are effecting the patients.

    Maybe its all about objectivity coupled with true compassion...kind of a hard thing to apply when you are watching someone you love hurt themselves.

  13. After two years of "traditional" therapy with a variety of CBT therapists and dietitians, I now see their goal was to convince my daughter to eat - didn't work.

    Now doing Maudsley, and yes it is hard, I can't believe that we didn't do this sooner. To me, it's just common sense. If a child/teen is unable to feed themselves adequately to a degree that it is affecting their health, then, yes, insist on him/her eating food.

    I can see, though, that this method does take at least one parent at home and parents with thick skin and an abundance of patience/love, so not every family will be able to do it successfully.

    I do hope that the Maudsley FBT becomes the first line of defense when an eating disorder is diagnosed not what we stumble upon after searching and searching for answers in desperation after years of ineffective treatment.

    Keep up the crucial work, Laura!


  14. I think that eating disorder recovery means that the person learns to eat no matter what else is going on, whether they are upset, sad, tired, anxious, stressed, etc. Of course this doesn't do anything for those feelings, they will still be there and if they are intolerable, another behavior will be substituted. These other behaviors can be healthy and positive or they can be incredibly dangerous in themselves.

    So how does this relate to FBT? Well, for my daughter, I am there to make sure she eats no matter what. We do this over and over and will continue until she has it down. She doesn't go to a hospital for 3 week with 100% supervision, then come home and try to do it on her own until she fails, then repeat the cycle over and over again. She doesn't have 10 different therapists over 10 years all telling her there is a different reason for her problems or a different solution. She just has me telling her to eat and go to therapy. She couldn't make herself do this at first. A therapist couldn't make her do this. Yes Laura, it is compliance!!

    And of course we realize that eating isn't the only solution, it's just our first step to recovery and it's how we keep her brain and body healthy so she can mature as a teenager should and participate in life and have a real future while she is continuing on with her therapy. She does need to learn to manage feelings without using eating disorder behaviors, no one would doubt that and I don't think FBT is opposed to that!!!

    And, part of FBT, we don't blame her for being sick. She doesn't blame us for her illness. She knows it is a genetic predisposition-her brain is different. I could restrict for days and it would not change any emotions that I have. She knows that if she gets malnourished she will get sucked into the quicksand again, whether she wants to or not--we have seen how this can start and learned to turn it around. She learned all this due to FBT, the Maudsley method. We all learned that and we learned to work as a team-and family is a permanent team, not dependent on insurance or geography. So Maudsley is going to offer better continuity along with the compliance.

    Triggers? Well, everything in life can be a trigger because life leads to worries and emotions that have to be dealt with in some way. No one's life can ever be trigger free....IMO, it would never be possible to have a life free of problems, hurt feelings, anger, sadness. But it would be possible to eat no matter what those feelings are. But it takes a lot of practice and doing it whether you feel like it or not. That's why a Maudsley mom is so handy....she's not perfect. She is hurting herself sometimes. She's only human but she loves her kid more than anything and she can get her kid to eat, no matter what....

  15. Oh Lordy

    I think I should clarify. Firstly, Cathy, I love your mum and have no doubt that she did everything she could. We are lucky that treatment and understanding of anorexia has taken massive leaps in the last ten years and that I have the luxury of the internet to read round the subject and find help and support from other parents. The loneliness of dealing with this on my own is too terrifying to think of. Your mother did an amazing job with limited tools, resources or back-up. You can't build the Golden Gate bridge with a hammer alone.

    Marcella, I found FBT, help, support and information for myself. I wasn't given ANYTHING by our GP. However, without the internet and resources of Feast, I dread to think where we would be. I understand about the chemotherapy analogy but must say that this is exactly how I felt in July 2009.

    I do understand that what worked for us does not necessarily work for everyone but feel quite strongly that everyone should be offered the information and the opportunity to give it a go, rather than have this method of treatment dismissed summarily as "only works for teenagers" or "doesn't have 100% success rate so is not worth trying".

  16. I agree with you Charlotte - everyone should be given the opportunity to try what is the best treatment known SO FAR.

    And no-one should have to do it alone (actually, if you are doing it alone, you're not really doing it!!!!!! although since you are obviously doing so well Charlotte, don't stop now).

    However for those people now for whom FBT is unsuitable and for eveyrone in the future we surely need to work out what are the essential ingredients and keep applying those in ALL situations, together with anything else from anywhere else that actually works.

  17. Marcella

    My dream is that, if the information and the tools to do FBT is offered as a first treatment, the resources to treat those who do not respond to FBT will be freed up. This means that research can concentrate on those people who really need it.

    I have seen over the last year that ed sufferers share many signs and symptoms but none of them fit into a neat little tick box for diagnosis and treatment.

    I have a dream (which I am hoping to share very emphatically in Virginia in 2011)


  18. Man, the comments on this post are way more valuable than anything I could say!

    Cathy you did ask: "Out of interest, does FEAST have any data relating to parents who have tried but been able to help their child? What is recommended for such families?"

    FEAST doesn't gather data, as such. I can tell you that LOTS of families struggle with and many are not able to re-feed their kids at home. It's a tough illness and they are often facing circumstances they can't fix (e.g. other illness in the family, their own illness, parents split on direction, poor clinical support, entrenched illness, lack of confidence...) This is a sad truth for a very challenging illness.

    But what I see FAR more often are the families who can't make a success of all the alternatives and find FOR THE FIRST TIME that they can make progress when they are told about and truly supported in home refeeding and then the later stages of returning independence to the patient.

    Traditional treatment doesn't work for most patients, we know that. The real question is why traditional treatment is still the standard.

  19. Jaded,

    There is no question in my mind that intention matters. If the parents and the clinical team don't really care, and don't really believe in the treatment or the patient then it doesn't matter what treatment "approach" we're talking about it is a cruel farce.


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