In 2012 I was privileged to present at the Mind and its Potential Conference. Below is the video of my presentation. It has been on our Facebook page for a while and got shared around the viral world with really good feedback for which I am grateful. I thought I should put it up on our webpage.
An adult patient I recently worked with (who made an incredible journey of recovery after over 5 years of being unwell with disordered eating) recently took time out to write an open letter to parents whose children are currently engaged in family based treatment. Joanne felt compelled to write this letter after what she frequently observed taking place in our waiting room as families were leaving their FBT meetings.
This will be the fight of your life, to save your life - your child.
When I lived with an eating disorder, I lived for nothing but the eating disorder. In doing so, I developed two versions of myself, Joanne, the girl I truly was, the girl who was sensitive, kind, loved her mother unconditionally and savored time spent with her. Then there was Joanne the eating disorder. This is the Joanne who lied about eating and how much she had ate, the Joanne who threw out food, stole food, purged. This was the Joanne who told her mother that she hated her, that she wasn’t sick and that she didn’t need help. The Joanne that manipulated my mum into thinking I would be ok, by convincing her that I wanted to eat but I just wanted to be ‘healthy,’ when in actual fact my body was screaming out for nourishment. As my eating disorder became too obvious for me to disclose, Joanne, the eating disorder told my mum that as my parent she could never understand and that it was her fault that I had developed a distorted perception of myself.
I obviously can’t speak for every eating disorder case out there, but when your child says they will eat but ‘only healthy foods’ you should hear alarm bells. The fact that they are set on limiting their diet to healthy foods alone proves just how trapped they have become by an eating disorder. Furthermore, it’s almost guaranteed that their idea of a ‘healthy’ diet and portion size is extremely unrealistic and dangerous. I got to the point where I would watch my mother cut up vegetables and throw a raging tantrum the moment I thought she was cooking too many. “Why would you do that!” I would scream as if she had just told my worst enemy my biggest secret. Sometimes I would work myself up into such a state that I would then refuse to eat, as if my mother’s actions had given me a reason not to, when all I was actually doing is giving into the eating disorder. Instead of taking responsibility for why I did not want to eat, I was trying to shift the blame onto my mother and her actions. I remember feeling torn in these situations. On one hand, I remember realizing how irrational I was being, but on the other hand, hating my mother for being so insensitive to my perceived needs.
So I want to make this point. Even during the most trying times, try to recognize that your child is living through two versions of themselves, the personality they were born with, and the personality of an eating disorder. Try to separate them in your mind so that you don’t take the mean things say to you and their often-extreme behaviors to heart. When you take what they say to you in the heat of the moment to heart it will lead you to do one of two things. You will either fight back aggressively about the surface level issue eg: preparing too much food and your child, the eating disorder, will resent you and rebel, leaving you at a dead end. Or you will give into your child and let them take control of their diet. Both of these actions will only keep your child trapped in this ongoing battle of disordered eating.
So what do you do? In terms of their physical needs, remain firm with your child and their diet, which should incorporate a wide cross section of food. This is something my own mother struggled to do for a very long time, to the detriment of my health. She would hate to see me upset so she would give in to my demands for low calorie meals and allow me to over exercise. She would allow me to avoid going out for dinner and if I did attend a dinner she would order my food with no dressing or cooked with no oil. She did this because she loved me and was trying not to make my life easier during an obvious time of uncertainty. She just wanted me to eat anything. But what she was actually doing was loving me to death. Like my own brain, she was also feeding into the eating disorder, further distorting my view of normality, and adding momentum to my world which had become a constant merry go round of fear frustration, restriction, binging and purging. Looking back, what I wished my mum had done is to kick me out of the kitchen and prepare good nutritious meals. When I questioned her about it, she should have her explained to me why I needed to eat it and why the portion size she had given me was realistic compared to my bird sized beliefs. Easier said than done, right? When my mum did start doing this I was convinced she had turned her back on me, that she didn’t love me anymore. I would freak out in attempt to manipulate her into allowing me to eat what I wanted to.
Looking back now the biggest thing I learnt from my relationship with my eating disorder and with my mum is the power I parent can have in reshaping a child’s perception of their illness. In a nutshell, I will ask of you one thing - when your child freaks about certain foods or portion sizes don’t freak out back at them. Realize this is the eating disordered side of their personality coming out and see it as an opportunity to talk your child about their beliefs and attitudes towards food, an opportunity to gain some insight into what’s driving them to behave this way. When I first realized my mother was really listening to me and trying her best to understand, I gradually became honest with her and started to acknowledge my own irrational behavior. I believe I could do this because I wasn’t scared that she was going to try and change me overnight, or make me do something I didn’t want to do, I was comforted by the fact that she was trying to help release me from a prison I was well aware I may never be free from without her help. Yes we had some very heated moments, I threw food, I screamed, I called her names. But the more she didn’t fight back with anger, but with concern and love, the more I began to give in and as I gave in I shared more, and as I shared more I realized how sick I truly was.
This brings me to my next, more important point – consistent communication. Talk to your child, in a calm collected way. Realize that their relationship with food is the secondary issue, the result of some other psychological battle that they have been carrying, perhaps for many years. I can’t stress enough the importance of communication. Even if they don’t realize it at the time, and maintain that they have nothing to say, expressing what is troubling them out loud will have some powerful positive impacts on this disease. Simply acknowledging it exists, and that things aren’t right, is a step towards recovery and overcoming it once and for all.
The single most important thing that kept me on track during my recovery, particularly when I felt down and defeated, was positive reinforcement. I will explain what I mean. I have read that when a person develops an eating disorder their brain stops maturing. Regardless of the science behind this, I wholeheartedly believe this is true. I became like a child in all aspects of my behavior, my temper and my ability to look after myself. I was a 20-odd year old, living in the adult world with a 14 year olds brain. When I avoided eating or felt I lost weight, the eating disorder rewarded me a feeling of positivity, a sense of value and wellbeing. When I ate, I automatically felt less worthy as a person, more irritable and irrational. Overtime this control that the eating disorder had on me developed into a deep anger and confusion that lived with me even during the times when I was feeling ok about my body image. No matter how much I wanted to get better I couldn’t turn this mental pattern around.
Like a child, the eating disorder makes you demand attention, either the attention of yourself by liking what you see or the attention of others saying that you look good, thin, beautiful - perfect. As you are probably aware, many with eating disorders are driven by the pursuit of perfection so hearing complements about their appearance or even concern that they are looking too thin will only spur the eating disorder on. One thing that my mother helped me to do was to redefine what I believed to be positive reinforcement. Each time I ate my mum would focus on what I had consumed which I may have found challenging, instead of focusing on something which I hadn’t managed to eat. She rewarded me with praise and it made me feel good during instances when I whole-heartedly believed I had done wrong by myself. The more praise I received the more stopped devaluing myself every time I ate and starting believing that nourishing myself was right. The more I took on this belief the more power I was stealing back from the eating disorder. I also want to highlight the importance of having a very supportive group of professionals around your child. The knowledge and insight I gained from my psychologist and dietician, and their positive reinforcement also served to drown out the demands of the eating disorder and enable me to develop new values and attitudes towards food and the amazingly positive impact it can have on your quality of life.
You see, recovery is about a mindset, yes physical aspects like eating, regaining wait and reincorporating a varied diet in your child’s life are essential, but these changes are secondary elements in the recovery process. These changes cannot be sustained unless you child is willing and able to alter their mindset and develop a new relationship with food. So as parents you need to reach out and hold onto any glimmer of hope, which shows you your child, is willing to change. Foster what's ever that is, like anything the more energy you put into something the more it will improve, take over, becomes second nature, their life - your life.
I know you feel lost. But just believe in your child. They are stronger than they seem. Do not make them feel like a lost cause and really support each step they take no matter how big or small. Appreciate dolly steps – it took your child a long time to develop this illness so it may take even longer to overcome. Each move forward counts towards becoming fully recovered. Love your child, hate the disease. You’re not battling your child, you’re battling an illness. Like any illness, do your best to keep your child on side with you so you can tackle it together. You may want recovery to happen quickly but it wont, and just because it wont please do not think you are a failure.
Upon writing this letter I asked my own mother what the biggest piece of advice she could give another parent enduring what we have gone through together. The first words which came out her mouth was “Get help before they turn 18.” We failed to do this and after I turned 18 my mother couldn’t provide me with any professional help without my consent. Because it took me so long to truly acknowledge that I needed support my battle continued well into my early adult life. I then found myself having to juggle my professional career and a disease, which had increasingly made me incapable of operating in an adult world. Help your child turn their life around before it becomes their only life and before it’s solely up to them. Provide strength and guidance with love, not resentment or anger, it’s not their fault they have developed this truly soul-destroying disease.
You have one of the toughest roles having to witness your child grapple with an eating disorder, but take comfort in knowing that you truly have the most power in helping them find themselves again.
Despite what they say they don’t hate you, and your support through this disease will bring you closer together. As, the saying goes, love can conquer all.
Good luck, stay strong and kind regards,
The “denial” (note those “”) of the illness in anorexia is well described. It is one of the most frustrating aspects of the illness for carers and clinicians alike. It contributes greatly to the expressed emotion (frustration, anger, criticism and patient blaming) that comes from clinicians and acts as a therapist driven therapy interfering behaviour. Therapist will describe their feelings that somehow the patient is willfully lying to them, because the patient “must” be aware of their illness. They are being that naughty anorexic patient who seems to seek out to disrupt therapy.
What if clinicians ask that question that we ask patients so often “Is there a different, more workable, way of thinking about this?” As always, the answer is yes.
Until I began reading the blogs of Laura Collins, I had never heard of anosognisia. This is apparently a common problem in several brain diseases which where the sufferer no insight or is unaware of the illness. It occurs in neurological diseases such as Alzheimer’s disease, Huntington’s disease and after strokes. It can also be a feature of schizophrenia and bipolar disorder.
Some FMRI pictures and more information can be found here.
Im not sure if it has ever been studied in anorexia nervosa. Im not sure if it would be preexisting and exacerbated by starvation, or caused by starvation.
It important though for us to hold information in a way that may help us see that anorexia nervosa is not a willful choice. Holding this stance is incredibly helpful for therapist (and hence their patients).
Can I share, with permission, the story of a patient of mine. She has had an eating disorder for some time, a long time. At times she wants to keep it, at times she wants to be free from it. Many of these times happen at the same time.
She had being doing as well as she had done for a long time. She had not needed intensive treatment in an eating disorders unit or a day program or a medical unit for over a year. This was the first time she had been able to do this for some years. She was able to reconnect in a deep and meaningful way with her children and husband. Life was becoming meaningful and worth living. I have a lot of time for this patient. I have learnt much from her about how to be a better therapist and, in a lot of ways, how to be a better person.
Then she got sick again, very sick, life threateningly sick. It took a while, but she agreed that eating by herself, even with her husbands support, was being made too hard by the anorexia. She needed to go to hospital. At times she could see that the anorexia was so in control she would not be able to eat in hospital (this has happened before). Together we decided that we needed to admit her to a hospital to be tube fed so that she could again restart the process of nutritional recovery.
The hospital where we had done this before had been closed. It was a private unit and didn’t make shareholders enough money. Another private unit had a long waiting list and had a policy of not using tube feeding. They seemed to think that patients should not “cop out” and require a tube. This confused us.
So despite having private health cover, the private health system was not able to help. So we turned to the public system, as all those without private health cover need to. In NSW there are two adult beds designated for patients with eating disorders. These beds are in a general psychiatric unit within a medical hospital. Perhaps not surprisingly, these beds were occupied and there was a long waiting list.
There was another option. There is an excellent hospital in Sydney’s West. It is internationally renowned for its treatment of children and adolescent with eating disorders. They also have access to some beds for adults with eating disorders. They have a great team with great people with high levels of expertise and experience in helping patients just like mine.
One of the first questions the intake officer asks you is your post code. If you don’t have the right post code, you don’t get access to adult treatment.
Working with the GP and my patient talked to a consultant psychiatrist who was willing to accept the patient and treat with the intensity needed to save a life. There was a bed available. However, there was that post code problem. We were told however, that we could probably gain access to a bed if we wrote to the Minister for Health explaining the clinical need.
Three letters were written.
One response received.
“I understand that the patient is very unwell and is likely to need artificial feeding and a full physical assessment. Given the clinical situation described.. I would strongly recommend the patient attend the closest Emergency Department as soon as possible”.
Well, thats a no then. We had thought of the option of a medical admission at the local hospital, but our experience is that the response has been rehydration (with the risk of refeeding syndrome) and discharge. The response ignored that anorexia is a mental illness with severe and life threatening physical complications. It requires specialist treatment.
All patients deserve access to the best possible treatments irrespective of their post code.
If you don’t think the above scenario is acceptable. The I ask you to sign the petition that you can get to via the link below.
A Discharge Letter to Anorexia
MFBT can be challenging for many families, who in implementing the required interventions to guide their child to recovery, may experience distress at how the necessary firmness of interventions may impact upon familial relationships. A family I recently worked with repeatedly raised concerns over whether the course of treatment would damage their relationship with their daughter. In this particular instance, the anorexia coerced their daughter Mary to repeatedly threaten their relationship, stating that if her parents didn’t back off she would forever hate them and never speak with them again. This understandably caused considerable distress for Mary’s parents, who decided to make some tough decisions which their daughter might not like, but which ultimately would save her life.
At the end of treatment, this is the discharge letter Mary wrote to the anorexia.
GOODBYE! All you did to me was push away my loved ones and loose my true self. I was beautiful inside and out, but with you in my life I had doubt. You were one of the worst things that have ever happened to me. I know to never be your friend again. I lost myself, I just wasn’t me. But now that you are no longer a part of my fantastic life, and I realize the strength of love and life, and how anorexia tears people apart and love brings them together.
The pain I experienced is indescribable, I had no control and it was scary. I have been so unlucky to experience anorexia, but there have also been some of life’s lessons learned. I have learned to always look at the positive side of things. I have learnt that you only live once, so live life to the full. I have learnt family is what will save you any day and every day. I have learnt that sometimes you may feel like giving up, but giving up is never an option. I have learnt that in life you should try smile every minute of the day, laugh until you wet yourself, and love like there’s no tomorrow. I have learnt that life’s journey is tough but with friends and family beside you it is possible to pull through it. Having YOU ANOREXIA RUIN MY LIFE has made me realise how important it to live everyday.
I have learned that nobody is perfect, everyone is individual and beautiful in their own way so don’t judge yourself against others, because you’re as perfect as it gets. I’d like to say I hate you for everything you damaged! I don’t ever want to see your ugly face again. I suggest you NEVER EVER come back to visit me or my beautiful family, because it is bloody proven that my family can beat anything in life no matter how difficult, we just put our hearts and minds to it. So I ban you from coming anywhere near me, my family or friends. Life without you is worth living. You made me hurt so so much that I am scarred. Although the memories are painful, I don’t mind looking back on them to say I will never go there again! GOODBYE ANOREXIA you are ugly, selfish, hurtful, painful, and damaging and you make me feel sick! I am Mary and I am cured, I choose to love my family, friends and myself. You’re no longer present in my life. You do not exist! That’s right I said you do no longer fucking exist!
I am now stronger more beautiful and happy. I love my life! I love my family. Without my family I would also not exist. You kept me going. You kept my heart beating. You are irreplaceable. I cannot thank you enough for understanding. I know I have hurt you but I am deeply sorry. Because when you hurt, I hurt. When you cry, I cry. When you laugh, I laugh. When you smile, I smile. So I say lets smile because life is a treasure, but the biggest gift of all is that we have each other. Thank you for being my family!
To finish this letter my last statement will be GOODBYE, GOODBYE Anorexia! YOU ARE NO LONGER A PART OF ME.
From Mary (Officially cured from Anofuckingrexia)
By Chris Thornton - Clinical Director of The Redleaf Practice
and Dr. Stuart Murray - Director of Family Therapy at The Redleaf Practice
This post is based on the paper “Do the Components of Manualized Family-Based Treatment for Anorexia Nervosa Predict Weight Gain?” by Ellison and colleagues. Just to note that Rani was a former intern of Chris and most of the other coauthors are friends, mentors and colleagues of both of us. Andrew Wallis also provides fortnightly supervision in MFBT at The Redleaf Practice.
The MFBT treatment posits 5 key features that are seen to be central to the efficacy of the treatment.
This study looked at the effect of these features on the outcome as measured by weight change. The authors developed a scale they called the Core Treatment Objectives Clinician Rating Scale (CTOCRS) which was completed after every MFBT session by the therapist (which does introduce some potential bias into the study). They also investigated the role of the therapeutic alliance in outcome.
What the study found:
Although MFBT was not compared to another therapy it is pleasing to see yet another study indicating the efficacious nature of this approach to therapy.
The key features of MFBT are those which drive weight gain and adolescent recovery from AN. Indeed, greater parental control, consistency, externalization of the illness and reduced criticism were directly related to favourable treatment outcome. More specifically, parental control of AN behaviours was the single-most significant predictor of treatment outcome. This adds to the increasing body of evidence demonstrating that the core components of MFBT are indeed important. The only component that was not associated with weight gain was sibling support, although this is indirectly associated with greater weight gain. Greater sibling support generally allows parents to exert greater parental control and take a firmer stance with the AN, knowing that their symptomatic child is well supported by siblings.
Related to our previous blog on the moderating variables in MBFT, it is interesting to look at the papers findings about drop out. Drop out was not predicted by age, weight at entry to the hospital, or illness severity as measured by the EDI-3. The only predictor of drop out was lower levels of parental control. So again, severity and age should not be seen as contraindications to MFBT.
The data seems to suggest that the relationship between the parents and the therapist is important. Interestingly there is a gender difference here. Mother-therapist alliance was more important than parental alliance overall and predicted greater weight gain and less drop out. A stronger father-therapist alliance paradoxically predicted less weight gain. These results are noted as preliminary and are difficult to derive a clinical meaning from, especially in light of the finding that parental unity was important in weight gain.
To quote the paper; "Of all the core components of the FBT, parental control over AN behaviour was found to be the strongest predictor of outcome. This finding matches a qualitative study (unpublished), where parents believed that taking control of recovery was one of the most important aspects of FBT (p4).” Later, ... “the finding that parental control is the central predictor of change is important when considering potential augmentations to FBT" (p5)
All core features of MFBT acted to increase parental control and thus are still central foci of treatment in FBT. This included sibling support.
A take home message from this paper for me is that you need to beware of adaptions of MFBT, particularly if those adaptions are in anyway related to undermining parental control over the anorexic behaviour. The family-wide difficulties encountered in successful MFBT based treatment, and the level of anxiety generally experienced by all involved often means that clinicians may be invited to endorse less challenging forms of treatment.This is reflected in the complexity of delivering MFBT in a multidisciplinary setting as this increases the potential for members of the team to inadvertently undermine the parents capacity to get their child well. It is not only important that parents be united, it is vital that teams stay united in the face of Anorexia.
By Chris Thornton - Clinical Director of The Redleaf Practice
and Dr. Stuart Murray - Director of Family Therapy at The Redleaf Practice
The learned doctor says to the family of the young girl suffering from anorexia nervosa, "I'm not sure if Maudsley is the right treatment for you. I think individual therapy would be much better for you".
There may be many reasons that said learned doctor may say this to this patients family. Some of the most common ones will be; “we know that Maudsley doesn't work for everyone (and you are one of those)”; “you/your daughter is too old or to psychologically mature”; “anorexia is a chronic illness and is resistant to treatment so it is not logical that a family could renourish a starving child in the long term ( as hospital has often failed to do)”; “your daughter is not motivated to change”; “your daughter's eating disorder is too severe to be treated with family therapy”; “your daughter needs to be helped to separate for you and learn to make her own decisions”; and the less often expressed but implied - “your daughter has an eating disorder which means you have caused it by over enmeshment with your child; as it was your fault you can not be involved in fixing it.”
I'm sure that the learned doctor is not trying to practice in an uninformed or unethical way. They mean no malintent. It is just by behaving in an uninformed way, they are potentially depriving their patient of the leading treatment available for adolescents with anorexia. This is a potentially lethal mistake. In my humble opinion it is also unethical
“MFBT does not work for everyone”
Numerous reviews of the scientific literature have reported six Randomised Control Trials involving MFBT. These have indicated the clinical effectiveness of the treatment approach. The outcome data for this therapy is strong with around 70-80% of patients undertaking MFBT achieving a good recovery after 12 months and 90% recovery after 5 years (Lock et al. 2006).
Previously, one fair criticism was that MFBT had not been compared to an individual therapy that would be suitable for adolescents. This was rectified in 2010 when Lock et al (2010) published data that indicated that MFBT was superior to Adolescent Focused Therapy in terms of weight gain and change on the Eating Disorders Examination (a measure of eating disorder behaviour and cognitions) at end of treatment. MFBT was also superior in terms of full remission rates at both 6 and 12 month follow up.
That is between 70 - 90% of patients do well with MFBT, and MFBT seems superior to when the adolescent was treated in individual therapy. It is correct to say that MFBT won't work for everyone, it will however assist 70-90% of patients gets well. This compares favourably with the natural history of Anorexia Nervosa which shows a recovery rate of less than 50% at 5 years.
MFBT is, without question, the first line treatment of choice for an adolescent or child with anorexia nervosa. Any practitioner that recommends against it is giving you bad advice.
“MBFT will not work for your child because the Anorexia is too severe”
It is important to work out which families may do well with MFBT. We now have some data, based on one study, done by the originators of MFBT, that might help use science to answer some of the learned (but paradoxically, uninformed) doctors other criticisms.
The paper I'm looking at today is by Daniel le Grange et al (2112). This paper tries to break down the data and see if we can be guided in looking at which families MFBT may work best for. Previous studies have indicated that for greater weight change, patients with HIGH levels of eating related obsessionality did better with a longer, rather than a shorter course of MFBT. This makes sense as it is typically thought that the higher levels of obsessionality the more severe the patients anorexia. Single parent or non intact families also did better ( in terms of eating disorder psychopathology) with a shorter rather than longer course. This again makes sense as MFBT is difficult enough for "intact families" and single parent families are likely to need support over a longer period.
The most recent study found the following :
Again, patients with the MORE SEVERE ILLNESS DID BETTER WITH MFBT than AOT. Both patients with higher level of obsessionality and higher global EDE scores did better when treated with MFBT than in individual therapy at the end of treatment. In addition the presence of the binge-purge subtype of anorexia seemed also to do better at follow up when treated with FBT over individual therapy. This was not a significant result but is interesting because the presence of binge-purge behaviour is also an indication of the drivenness of the patient to lose weight (ie higher anorexic severity).
It did not matter as to how depressed you were, what your level of self esteem was, your level of self efficacy (of patient or parent), or BMI at beginning of treatment (although patients weights were above 75% of ideal body weight at the beginning of the study). There was no difference between treatment here.
This means that these variables, including markers of severity such as weight and depression, do not help us determine if MFBT or individual therapy would be better. MFBT should not be denied on these markers of “severity”.
Outcome in both treatment was worse if you had required an inpatient admission. Notably it did not mean that MFBT was less helpful if you had this marker of severity and is hence not a reason to note use MBFT as your first line treatment. Again in BOTH conditions older adolescents had a poorer level of remission of illness irrespective of the type of treatment. The same can be said for duration of illness. What these point to is the need for early and active treatment of the illness with the most effective treatment.
A common ‘learned Doctor” reason to not use MFBT is that the older adolescent, with their assumed greater maturity and insight may be more suitable to an individual approach (actually the studies authors of the current study predicted this). This data says that this is not the case. Age is not a factor in not choosing MFBT.
“You shouldn’t use MFBT because you can’t trust the research”
I have heard this said often as an argument to not use Evidence Based Treatments. It is tantamount to saying the data supporting MBFT is scientific fraud. Clinicians will often claim that the patients selected in the research studies are “not like my patients”. They usually sound very convincing, but I’m not sure how they know. What may not be openly discussed, is that in such cases the learned doctor may be (unintentionally) overlooking many years of international scientific and rigorous research, on the basis of an opinion with no scientific support. This advice may jeopardize your child’s well being.
The only way to work this out is to look at the exclusion criteria used in studies. In the study discussed above the exclusion criteria were: currently psychotic, dependent on drugs or alcohol, had diabetes or were pregnant, or had previously had MFBT or AFT. Patients were not excluded for common comorbid diagnosis such as anxiety, OCD, or depression. In my practice I would not engage in an active treatment for an eating disorder patients with psychosis or active substance issue. I would treat patients with diabetes and who are pregnant. Patients also had to be seen to be medically fit for outpatient treatment, which is entirely reasonable.
The patients in these studies are the same as the patients who present to an eating disorders clinic. There is no reason not to apply the scientific findings to your child.
“Individual therapy would be better for your child (... because it is your
fault she has it)”
If anyone can show me any data about an etiological role for families in anorexia I would be very happy to see it. Until then, I am going to keep putting it out there that families are not the cause of anorexia. To continue to hold this view restrains the treatment of anorexia. To the contrary, families are the single most effective resource in getting children well from anorexia.
To say that families cause or maintain anorexia is wholly uninformed. The presence of any life threatening illness naturally causes changes within family functioning, and anorexia is no different. Simply put, everybody in the family is effected by the presence of AN, and not just the patient. It can make some family members to feel guilty, others to feel angry, and it can often coerce us away from our normal instincts and relationships through fear of not wanting to elicit an anorexic backlash or exacerbate symptom severity. In a sense, the presence of anorexia, and the fear it sometimes elicits, can result in some families almost becoming used to the anorexic regime. To my mind, this a symptom of the anorexia which impacts the whole family, and does not mean that the family caused or is maintaining their child’s anorexia.
What strikes me is that it is impossible to address such family wide effects of anorexia in individual therapy. In my opinion, one of the reasons why MFBT is so effective is precisely that it relies on parental expertise. Nobody knows children better than their parents, nobody loves them more, and nobody will fight harder to save their life. Also, the changes brought about in MFBT (which include addressing the family wide symptoms) lead to lasting change because children live and exist in the context of their families 24/7. This is most certainly support by scientific research which shows that even after 5 years, 90% of children who undergo MFBT are still symptom free.
MFBT is most certainly a difficult form of treatment, and in many instances is one of the tougher challenges a family will face. However, this alone is not sufficient to dissuade people from commencing a treatment which although difficult, is highly effective in saving their child’s life. In my experience, every single family I have worked with has said during the course of treatment that the sacrifices and challenges involved in getting their child well pale into insignificance when considering the potential thought of their child not getting well.
“MFBT is only about weight gain and will not take into account the underlying psychological factors that have caused the anorexia”
Even if this was true, and MFBT was a only a vehicle for weight gain, this may not be a bad thing as weight gain and full nutrition is needed in recovery from anorexia. However, weight gain is necessary but not sufficient for recovery. Otherwise, hospitalisng patients and refeeding to normal weights would be curative. We know that it is not.
The idea that MFBT does not address adolescent issues that may be involved in maintaining the anorexia simply indicates that the maker of the statement does not have a rudimentary understanding of, and certainly no training in, MBFT. Phase 1 - agreed, it is focused on weight gain. Simply put, the magnitude of the potential medical crisis means that treatment is justifiably focused on weight gain, to reverse the features of starvation which trap many adolescents in long term anorexia. However, to achieve this weight gain there are usually some important changes that occur in the structure of families (such as everyone being present at meal times; health becoming a priority; sibling relationships are strengthened and parent relationships are empowered). Then in Phase 2 - eating is handed back to the adolescent and in Phase 3- adolescent issues are addressed. Repeat in phase 3 (and in practice it probably begins in phase 2) adolescent issues are addressed. It is just that these issues are addressed in an individual without a starved brain rather than prior to refeeding. I have done enough individual therapy with patients with a starved brain to recommend against it whenever possible.
When we look at the data, there are very few reasons to suggest an individual approach over MFBT approach in the treatment of adolescent anorexia. MFBT needs to be the first line treatment as over 70% of families will have a good outcome with MFBT. Any advice to the contrary is, at best misguided, and is not based on the latest evidence. We do need some more information about extremely low weight patients, but overall, patients with high levels of severity do as well or better with MFBT. There does not seem to be any reason to not offer MBFT based on measures of “family dysfunction”. The initial goals of MFBT are weight gain, as they should be in the treatment of anorexia. The notion that MFBT is only about refeeding is misguided and shows a lack of training in MFBT. Lack of initial and ongoing training in Evidence Based Therapy in the eating disorders is a major problem which needs to be addressed as a priority.
with thanks to
The Battle for Better Access to funding for Mental Health Treatment in Australia. Get Informed & Be Heard.
The Battle for Better Access to funding for Mental Health Treatment in Australia.
Get Informed & Be Heard.
As some will know from November 2011 funding for mental health changed radically in Australia. Unfortunately, this change was for the worse in my opinion. The is certainly so for the eating disorders sector.
Before November 1st, 2011, patients were eligible for 12 sessions of therapy which would be subsidised under Medicare. For patients with “special circumstances” another 6 sessions could be accessed. Patients with eating disorders were usually granted the “special circumstances” sessions and so, in effect received 18 sessions subsidised by the government. Sessions were not fully covered and patients still paid around $80 - $100 per session out of pocket. After 18 sessions all fees for treatment became out of pocket as psychological therapy is poorly covered by private health funds (although massages and running shoes are).
Public disquiet with this decision led to a Senate enquiry. The chair of that committee, Senator Penny Wright of the Greens, prepared a majority report calling for the changes to be held off until a suitable replacement for funding can be found. However, this report was not tabled until after November 2011 and the changes have already taken place. I understand that Senator Wright has tabled a private members bill to reverse the changes and that this will be debated in February 2012.
In my role with the Australia and New Zealand Academy for Eating Disorders, I had the opportunity to meet with the Minister for Mental Health Mark Butler on two occasions. On both occasions it was at the invitation of The Butterfly Foundation, Australia’s leading eating disorder patient advocate group. I do believe that Minister Butler was unaware of the “unintended consequences” of the decision on patients with eating disorders.
In meeting with the Minister it is clear to me that a combined consumer/practitioner voice is the most important way to effect political change. The role of consumers (which is not a great term but it is the one politicians have become accustomed to) is of utmost importance.
Here are some things you could do:
A sad reflection of the media and my own professional bodies is that the majority of information available comes through activist groups on social media outlets. Such sources are biased in a direction of reverse the cuts, but I’m not pretending to be balanced in this argument. Twitter and Facebook has led to a few regime changes recently so social media is not a bad thing. The best fb page i have come across is
The also have a website at http://www.betteraccess.net/
The Australian Psychological Society also has some information of use in their “news” section at: http://www.psychology.org.au/
2. Be Heard
You can join social media campaigns by joining http://www.facebook.com/groups/GetBOMHC/
You can raise the issue on Twitter if you have an account. Some members are engaging in a 30 tweets to Minister Butler in 30 days campaign.
You can sign an online petition at http://www.gopetition.com/petitions/better-access-to-psychologists.html
You can vote on http://suggest.getup.org.au/forums/60819-campaign-ideas/suggestions/1833821-better-access-to-psychologists to raise the profile of this issue.
Most importantly you can write to the politicians. You should write two letters. The first should be to your local member, asking them to raise the issue with Minister Butler. The second is to Minister Butler himself.
http://www.betteraccess.net/index.php/take-action/stop gives you lists of your local members and Minister Butlers address.
http://www.psyber.net.au/index.php/media/57-articles/1623-tell-the-minister has some sample letters that you might want to copy points from.
The letters don’t need to be long. They DO need to be hand written. My information from the Department of Health and Aging tells me that handwritten letters are far more effective in getting a politicians ear that computer generated ones.
I’m posting this because of the importance of this issue. The government has unintentionally raised an unacceptable barrier to effective treatment. I’ll write more on the issue in later blogs with information specific to eating disorders. We have until February to take some effective action so we need to move now.
Please post any feedback or comments either on the Facebook page or on the website.
I came across a Facebook page called leftoverstogo which in turn directed me to an article which was just published in The New York Times called “The Fat Trap”.
The article itself is well worth reading, although there a more statistics in there than in many scientific articles I’ve read so it is not the easiest read.
It reminded me however of the enormous complexity of weight loss and how the body has been programmed to fights against it and defend a weight that is biologically predetermined. The article is written from the perspective of obesity, but applies to anorexia and bulimia as well.
The article discuses how we already know that efforts at weight control trigger metabolic and hormonal changes that work to defend a higher weight. However, newer research showed that...
“a full year after significant weight loss, these men and women remained in what could be described as a biologically altered state. Their still-plump bodies were acting as if they were starving and were working overtime to regain the pounds they lost. For instance, a gastric hormone called ghrelin, often dubbed the “hunger hormone,” was about 20 percent higher than at the start of the study. Another hormone associated with suppressing hunger, peptide YY, was also abnormally low. Levels of leptin, a hormone that suppresses hunger and increases metabolism, also remained lower than expected. A cocktail of other hormones associated with hunger and metabolism all remained significantly changed compared to pre-dieting levels. It was almost as if weight loss had put their bodies into a unique metabolic state, a sort of post-dieting syndrome..’
also ... “researchers have so far confirmed 32 distinct genetic variations associated with obesity or body-mass index”.
If this applies to obesity it also applies to anorexia (in particular given the evidence of genetic contribution to this illness) and also bulimia nervosa. This explains why those suffering from the eating disorders become so preoccupied with food weight and shape during the course of the illness. It is also why continued weight loss becomes harder and harder work with greater suffering leading to less “reward”.
The article describes neurobiological research helping us to understand the link between starving and binge eating.
“Another way that the body seems to fight weight loss is by altering the way the brain responds to food. Rosenbaum and his colleague Joy Hirsch, a neuroscientist also at Columbia, used functional magnetic resonance imaging to track the brain patterns of people before and after weight loss while they looked at objects like grapes, Gummi Bears, chocolate, broccoli, cellphones and yo-yos. After weight loss, when the dieter looked at food, the scans showed a bigger response in the parts of the brain associated with reward and a lower response in the areas associated with control. This suggests that the body, in order to get back to its pre-diet weight, induces cravings by making the person feel more excited about food and giving him or her less willpower to resist a high-calorie treat.
“After you’ve lost weight, your brain has a greater emotional response to food,” Rosenbaum says. “You want it more, but the areas of the brain involved in restraint are less active.”
The struggle against the body is one that is endless and rigged against you. The cost are enormous.
The article tells the story of one person who has successfully maintained her weight loss from obesity, which, as we know is a rare occurrence. Although the woman reports being happy with her daily routine it was hauntingly familiar.
“Janice Bridge, a registry member who has successfully maintained a 135-pound weight loss for about five years, is a perfect example. “It’s one of the hardest things there is,” she says. “It’s something that has to be focused on every minute. I’m not always thinking about food, but I am always aware of food.”
So she never lets up. Since October 2006 she has weighed herself every morning and recorded the result in a weight diary. She even carries a scale with her when she travels. In the past six years, she made only one exception to this routine: a two-week, no-weigh vacation in Hawaii.
She also weighs everything in the kitchen. She knows that lettuce is about 5 calories a cup, while flour is about 400. If she goes out to dinner, she conducts a Web search first to look at the menu and calculate calories to help her decide what to order. ... She writes down everything she eats. At night, she transfers all the information to an electronic record”.
To maintain a normal weight she needs to engage in many of the behaviours patients with eating disorders perform in the same ritualised way. This of course dosent mean that she has an eating disorder but I wonder if there are not more fulfilling things to focus on than measuring food and knowing how many calories you burn off during gardening.
I thought the article worth sharing as knowing about the futility of trying to fight the body may be helpful in evaluating the pro’s and con’s of continuing on in a fruitless battle.