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.
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).
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
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.