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Sunday, 29 July 2012

Just in case.....

you fancy a holiday in Italy, here's my brother's place.

Fermo villa rentalFermo villa rental

Worry warting

Worry warting or Chicken Licken Syndrome is something this family does very well.  Throw in a bit of catastrophising, with a half empty glass and you have pretty much got a handle on what I am up against with half of the family.

Things that people with Chicken Licken Syndrome should not do:

Think too much
Google their symptoms on the internet

Things people with Chicken Licken Syndrome should do:

live in the moment

So why am I on about this?  Well the wonderful Carrie Arnold of edbites, put me on to this piece of research which I find fascinating:

AN showed a mismatch between anticipation and objective responses, suggesting altered integration and, possibly, disconnection between reported and actual interoceptive state

Chicken Licken Syndrome.........

(You can find more about Alexithymia here and I found learning about dysphoria immensely helpful.)

Thursday, 19 July 2012

What every ed clinician should know - the gospel according to Charlotte

No two eating diorder patients are the same

If you are treating all eating disorder patients in the same way, you are doing something wrong.  Boys and girls are different.  Each patient comes from a different creed, class, colour, country.  Each has a unique path to an eating disorder.  Trying to fit each eating disorder patient into your particular "model" of treatment is doing nobody any favours. For example, there is no clinical evidence to suggest that CBT is particularly effective for pre-teens.  Blaming a 12 year old for not "benefiting" from six sessions of CBT is just absurd.  Whatever your prejudices and theories, don't force your patient to match your preconceptions.  

It is well known that many eating disorder clinicians have had an eating disorder in the past.  Try to remember that your patients are not you.  They aren't you, so only treating them the way you felt was successful for you, is cruel.

The theme that runs through all successful treatment is weight restoration.  Normalising nutrition  should be your first goal.  Weight restoration is essential BUT it is not enough. Both the patient and the carers will need help, support, patience and fine tuning to achieve that goal.  Expect resistance, extreme resistance.  Expect anxiety, pain, sadness, hopelessness, anger.  There is no easy path to recovery.  Your job is to help and support them on the torturous path to weight restoration, not to react to the anxiety and allow a patient to remain underweight.  Weight restoration can take a long long time, especially for older and longer term patients AND for growing adolescents.  A woman's brain and body continue to develop to the age of 21.

Leaving a patient underweight is not treatment.  It is collusion with the eating disorder and condemning the patient to a host of medical conditions and serious life threatening consequences, even death.  

Nobody talks anybody out of an eating disorder.  If it were that simple, then we would know what to do.  Try reframing an eating disorder as similar to schizophrenia.  No one's been "talked" out of that either.


An eating disorder is a physiological and a psychological disorder.  


Nobody knows what causes an eating disorder.  There are plenty of theories out there but it is essential to think outside the box.  If any of these theories upon which you are basing treatment were correct, we would know how to treat an eating disorder by now. Blaming popular culture, pictures in magazines, parents, attachment issues, family dynamics, "control" issues or whatever other psychological "causation" theory is your particular "pet" is not proven.


Regarding an eating disorder as a purely psychological problem and treating it as such can prolong and perpetuate the disorder, condemning a patient to osteoporosis, a weakened heart, kidney failure, dental problems, poor vision, death.  



Treating the purely physiological symptoms by refeeding to 90% of an Ideal Body Weight ("IBW"), without addressing an aftercare plan, continued weight gain, help with anxiety, etc. is like throwing a drowning man back in the water. Getting an anorexic to eat enough, or breaking the binge purge cycle for bulimia or the binge cycle for BED is not the answer. If it were, your job would be a heck of a lot easier. In fact, you probably wouldn't have a job because that can be managed by a variety of non-specialists.


Refeeding an anorexic or normalising nutrition for someone with bulimia or BED is the first step to enable them to start to recover.  Talking about it doesn't repair the malnutrition or repair the physical damage to the body and the brain.  By the same token, just refeeding without exploring therapeutic avenues and being aware of co-morbid conditions often lead to relapse.

It should be noted that therapy is more effective once the patient's weight is nearing its normal range.  The theory is that the brain is receiving sufficient nutrition to begin resuming "normal" function.  This, to me, makes a lot more sense than the amount of time spent breast feeding or whether a mother has difficulty expressing emotion.


Causation and affecting factors
(With thanks to ELT)


Many eating disorder patients have co-morbid conditions such as OCD, anxiety or depression. Some of these conditions are exacerbated by an eating disorder. However, some expressions of these disorders are symptoms of an eating disorder. It is impossible, unless you have documented clinical evidence of a pre-existing disorder, to diagnose a co-morbid condition and treat it until nutrition is normalised and a healthy weight range has been established. However, if there is evidence of a pre-existing condition, treatment protocols may have to be altered to take this into account.

Most people with an ED have NOT been sexually abused, but some have, and sexual abuse IS considered a 'risk factor' for EDs even though it is not the actual cause of the ED. That is, one might say that there is a trigger for the onset of disordered eating that can lead to metabolic changes which disrupt the functioning of the brain in people with an inherent vulnerability. If we think of the recent legal case involving 'E' that was widely reported in the media, sexual abuse made re-feeding MUCH harder, because 'forced' re-feeding was a re-enactment of past trauma. 



Thus, understanding the nature of the stimulus for the onset of disordered eating can be very relevant in some (but probably not all) cases of EDs. 


Another point is that there is research evidence to suggest that a significant proportion of people with EDs have a neurodevelopmental condition (e.g. autistic spectrum). In this case, prior knowledge of the presence of autism may be important (e.g. via a developmental history) because it may be that such individuals need different types of treatment and different approaches to re-feeding to take into account very high levels of anxiety, sensory sensitivities etc.

You don't have to be thin to have an eating disorder.

You don't.  Nor do you have to be fat.  You can be of quite normal weight.  


Judging the "seriousness" of a patient's eating disorder on physical appearance and weight is a nonsense.  I know of anorexia patients who are mortally ill at a BMI of 19 - within the accepted "healthy" weight range as specified by the WHO.  As each patient is unique (see above), so are their vital organs.  A heart does not conform to the DSM IV ideas of what constitutes "anorexia nervosa".  If a patient is underweight for their particular optimum function, the heart doesn't always hold on until the patient is "thin" enough to receive treatment.


The consequences of bingeing and purging are well known.  Many BED and Bulimia patients are of normal weight.  Judging the seriousness of their condition by just looking at them and weighing them could leave you with a dead patient.


If your patient presents at a normal weight, be thankful.  This gives you a chance to intervene early.  Early intervention produces better results in the majority of cases.  Be brave.  Just because the DSM says you have to be "thin" to have Anorexia Nervosa, use your gumption and start treatment before your patient is seriously malnourished.

There is a myth that Bulimia Nervosa is somehow not so "serious".  Not true.  

BED patients are at serious risk from  for type 2 diabetes, high blood pressure (hypertension), high blood cholesterol levels (hypercholesterolemia), gallbladder disease, heart disease, and certain types of cancer, alongside heart failure and respiratory failure.  

They are also likely to become physically ill due to lack of proper nutrition (Yes, you read that right!).

Weight and BMI

If you insist on using BMI as diagnostic criteria or as a tool for defining recovery, you should be aware of its shortcomings.  

BMI and the DSM

The DSM threshold for anorexia nervosa is a BMI of 17.5. Two points to notice. The first is that a person with a BMI of 17.6 is still “underweight”, albeit “moderate”. What is that about? I note that you are not “mildly” or “moderately” obese. This leads back to my “Fat is Bad and other urban myths” blog. The second is someone can be suffering from an eating disorder at a BMI of 20 +. You don’t have to be thin to be anorexic, or bulimic, or have an eating disorder.

BMI is one of my pet hates. I can do no better than quote from Wiki on this to explain my chuntering.

The body mass index (BMI), or Quetelet index, is a heuristic proxy for human body fat based on an individual’s weight and height. BMI does not actually measure the percentage of body fat.

While the formula previously called the Quetelet Index for BMI dates to the 19th century, the new term “body mass index” for the ratio and its popularity date to a paper published in the July edition of 1972 in the Journal of Chronic Diseases by Ancel Keys, which found the BMI to be the best proxy for body fat percentage among ratios of weight and height;[3][4] the interest in measuring body fat being due to obesity becoming a discernible issue in prosperous Western societies. BMI was explicitly cited by Keys as being appropriate for population studies, and inappropriate for individual diagnosis. Nevertheless, due to its simplicity, it came to be widely used for individual diagnosis, despite its inappropriateness.

However, BMI has become controversial because many people, including physicians, have come to rely on its apparent numerical authority for medical diagnosis, but that was never the BMI’s purpose; it is meant to be used as a simple means of classifying sedentary (physically inactive) individuals with an average body composition (Highlighting mine)



The most important thing to note is that a BMI of 18.5 is NOT a recovered weight or an IBW for about 95% of the population .  Ergo, 90% of IBW calculated as a BMI of 16.55 as a definition of recovery or as a point to end treatment is wrong.

Weight


Everyone has an “optimum function” weight range. This is a spread of weight where someone is at their best physically and mentally. The “normal” weight range is a BMI of 20 – 25 (well 24.9 to be precise but what’s a couple of pounds between friends?). There is a tiny (and I mean tiny) percentage of the population that is healthy at a BMI of 18.5. Why do some clinicians insist that every single eating disorder sufferer falls into this category?

I refuse to believe that all eating disorders patients are of the lean, slim, exceptionally fit marathon runner genotype. If they were, wouldn’t someone have noticed this? Some may be but I would argue that they are the exception to the rule and that the majority of eating disorder patients fit into the “normal” weight range (BMI of 20 – 25) for their personal optimum function.

Whether it is the insurance companies in the US or the National Health systems of the UK, Australia and New Zealand, discharging a patient at a “healthy” BMI of 18.5 is saving money, in the short term. There is a very strong argument that discharging a patient at a low weight is more likely to result in a relapse and readmission.

Saying “haven’t we done well” because a patient has reached a number on a scale and is now “recovered” does not mean a patient is mentally and physically well. Apart from the fact that BMI is a population screen and not a diagnostic tool, expectations that a patient is now “cured” can be confusing, disheartening and disempowering for the patient and the carer.



Eating disorders are deadly and require urgent treatment.

"Get them to eat a sandwich" or "You are not thin enough" or "You have to want to get better" or "She'll probably grow out of it" are not acceptable responses on a patient or a parent presenting with concerns about an eating disorder.   Nor is insisting that you need to find a "cause" for their eating disorder before physical conditions are addressed.  The patient requires physical stabilisation and normalised nutrition NOW.

Eating disorders kill.  Mortality rates for eating disorders vary widely between studies, with sources listing anorexia nervosa deaths from .3% to 10%. One fairly new study compared the records of individuals who had been treated at specialized eating disorders clinics with the National Death Index. Their findings for crude mortality rates were: 4% for anorexia, 3.9% for bulimia, and 5.2% for EDNOS (Crow, 2009). (With thanks to www.bulimia.com)

Eating Disorders are NOT "caused" by any of the following: a cry for attention, the result of abuse, wanting to look like the thin models in the magazines, attachment issues, a control issue or not wanting to grow up.

Get with the programme, people.  It  is 2012 and Hilde Bruche (and her clinical observations) should be left firmly in the last century.  No one knows what "causes" an eating disorder and any, or indeed all, of the above may have contributed to a patient's eating disorder.  That is not the point.


People with eating disorders are severely physically and psychologically ill. They do not need to "find their bottom" or "work out what caused it". Nor do they need you to satisfy your curiosity or spend fruitless months, severely malnourished whilst you try to parse out "causation" or make them fit in with your ideas about their eating disorder.   Their eating disorder is not your eating disorder, or your other patients' eating disorder.

They need urgent and specialised medical and psychological help NOW.  Restoring their physical wellbeing with normalised nutrition until they are at their weight range, whilst supporting them through this traumatic and difficult process is the way forward.  Writing your paper for the IJED can wait.


Prejudging what may have precipitated their descent into an eating disorder and labeling eating disorder patients or their caregivers does not help them recover.  Trying to work out what "caused" their eating disorder and disregarding their physiological needs puts them at a greater risk of long term physical impairment and, in 15% of them, at risk of death.


Patients don't choose eating disorder: Parents don't cause eating disorders


Patients don't choose to have an eating disorder.  Often they are unaware they are ill.  This may be due to alexithymiaanosognosia or other psychological complicationsErgo, they may not be willing to "own their recovery" or "want to get better".  Would you want to undergo a long, serious and anxiety provoking treatment, if you were unaware of, or unable to see how serious your illness was.  Making a patient accountable for their eating disorder and making them accountable for their recovery implies that the patient has chosen to not eat or to eat in a seriously detrimental way.  I find it helps to regard an eating disorder as a compulsion, rather than a choice.


Parents do not cause eating disorders.  In fact, often parents are the best resource to help a patient.  I am not saying there aren't any terrible parents out there.  There are.  However, the majority of parents are good people with their children's best interests at heart.  They are motivated, don't have a "clock-off" time, don't require paid holidays, or paid anything, are patient and loving.  When they present in your surgery the first time, they may be bewildered, angry, upset, frightened and anxious.  This is a normal reaction when your child is ill.  Ask any oncologist.

Wednesday, 18 July 2012

What every doctor should know:

An eating disorder is a physiological and a psychological disorder.  

Regarding an eating disorder as a purely psychological problem and treating it as such can prolong and perpetuate the disorder.  Treating the purely physiological symptoms by refeeding to 90% of an Ideal Body Weight ("IBW"), without addressing an aftercare plan, continued weight gain, help with anxiety, etc. is like throwing a drowning man back in the water.

Refeeding an anorexic or normalising nutrition for someone with bulimia or BED is the first step to enable them to start to recover.  Talking about it doesn't repair the malnutrition or repair the physical damage to the body and the brain.  By the same token, just refeeding without exploring therapeutic avenues and being aware of co-morbid conditions often lead to relapse.

It should be noted that therapy is more effective once the patient's weight is nearing its normal range.

You don't have to be thin to have an eating disorder.

You don't.  Nor do you have to be fat.  You can be of quite normal weight.  If your patient presents at a normal weight, be thankful.  This gives you a chance to intervene early.  Early intervention produces better results in the majority of cases.  Be brave.  Just because the DSM says you have to be "thin" to have Anorexia Nervosa, use your gumption and start treatment before your patient is seriously malnourished.

There is a myth that Bulimia Nervosa is somehow not so "serious".  Not true.  

BED patients are at serious risk from  for type 2 diabetes, high blood pressure (hypertension), high blood cholesterol levels (hypercholesterolemia), gallbladder disease, heart disease, and certain types of cancer, alongside heart failure and respiratory failure.  

They are also likely to become physically ill due to lack of proper nutrition (Yes, you read that right!).

Weight and BMI

If you insist on using BMI as diagnostic criteria or as a tool for defining recovery, you should be aware of its shortcomings.  The most important thing to note is that a BMI of 18.5 is NOT a recovered weight or an IBW for about 95% of the population .  Ergo, 90% of IBW calculated as a BMI of 16.55 as a definition of recovery or as a point to end treatment is wrong.

If all eating disorder patients were the slim, marathon runner genotype, someone would have noticed by now.  The likelihood is that your patient should have a BMI of somewhere between 21 and 25.  Recovery is about optimal function

Eating disorders are deadly and require urgent treatment.

"Get them to eat a sandwich" or "You are not thin enough" or "You have to want to get better" or "She'll probably grow out of it" are not acceptable responses on a patient or a parent presenting with concerns about an eating disorder.  

Eating disorders kill.  Mortality rates for eating disorders vary widely between studies, with sources listing anorexia nervosa deaths from .3% to 10%. One fairly new study compared the records of individuals who had been treated at specialized eating disorders clinics with the National Death Index. Their findings for crude mortality rates were: 4% for anorexia, 3.9% for bulimia, and 5.2% for EDNOS (Crow, 2009). (With thanks to www.bulimia.com)

Eating Disorders are NOT "caused" by any of the following: a cry for attention, the result of abuse, wanting to look like the thin models in the magazines, a control issue or not wanting to grow up.

Get with the programme, people.  It  is 2012 and Hilde Bruche (and her clinical observations) should be left firmly in the last century.  No one knows what "causes" an eating disorder and any, or indeed all, of the above may have contributed to a patient's eating disorder.  That is not the point.

People with eating disorders are severely physically and psychologically ill.  They do not need to "find their bottom" or "work out what caused it".  They need urgent and specialised medical and psychological help NOW.  

Prejudging what may have precipitated their descent into an eating disorder and labeling eating disorder patients or their caregivers does not help them recover.  Trying to work out what "caused" their eating disorder and disregarding their physiological needs puts them at a greater risk of long term physical impairment and, in 15% of them, at risk of death.


Patients don't choose eating disorder: Parents don't cause eating disorders


Often parents are the best resource to help a patient.  I am not saying there aren't any terrible parents out there.  There are.  However, the majority of parents are good people with their children's best interests at heart.  They are motivated, don't have a "clock-off" time, don't require paid holidays, or paid anything, are patient and loving.  When they present in your surgery the first time, they may be bewildered, angry, upset, frightened and anxious.  This is a normal reaction when your child is ill.  Ask any oncologist.



Tuesday, 17 July 2012

Friday, 13 July 2012

It's up to YOU.






So the Fairy Blogmother has gone off on one and quite rightly too.

An analogy:

Your diagnosed depressed child is lying on a gurney in A&E (ER), with blood pouring from his/her wrists after a suicide attempt.  A clinician comes over to you, takes your hands, places them on the artery above the cuts and says "Press here until the bleeding stops.  If it hasn't stopped over the next few days, bring him/her back and we will have another look."

Would you meekly accept that as treatment and trot off home?

Or would you raise the roof, contact the press, write to your MP, senator, President, Prime Minister?  Would you tell all your friends, your local newspaper, paste it on your Facebook page, tweet it?  Would you contact the B.M.A.?  Would you phone your lawyer? Would you just NOT STAND FOR IT?

If the answer to any of the above is yes, then why the heck are you accepting exactly this sort of treatment for your child's eating disorder?  It is time to get a backbone and stop accepting substandard treatment for your children.  If you don't stand up and shout, nobody can hear you.  If you are being silenced by other people's prejudices and ignorance (and yes, I do include the majority of clinicians in the "prejudiced and ignorant" category), you are effectively condemning eating disorder patients to a steri-strip to treat a broken leg.



Tuesday, 10 July 2012

Right to life.

I have been busy doing Mummy things and suffering badly with the weather.  Being allergic to one's own sweat makes humidity my enemy and I have lost all energy to do anything other than drive my daughters from pillar to post.  However, this morning I received an email that made my blood boil.

A friend from overseas writes that her daughter, a diagnosed anorexic, has been in hospital for 8 days refusing food, water and medication.  Because she is now 17, the hospital will not treat her in any way without her consent BECAUSE her weight is not low enough.  Huh?

I am hard pressed to find another mental illness where the treatment depends so heavily on the patient's physical health.  I know that a severely low weight is a symptom of anorexia (but not of bulimia or BED) but I fail to see why treatment is contingent on a person's weight.

So I trawled through the brilliant RETHINK's website.  I failed to find what I was looking for: namely, that schizophrenia should only be treated when a patient's physical state had deteriorated to a life threatening level.  So I tried Anxiety Disorder - nope, you can and should get treatment for anxiety disorder without having severely dangerous physical symptoms.  Depression?  Guess what?  You don't need to have physical symptoms to get treatment for that either.

I could go on and on and on but that would be kind of boring because you get the idea.

Why do the medical profession still persist in not treating the symptoms of an eating disorder until they become so severe that a) life is threatened at the most basic level (starvation, electrolyte imbalance, etc etc) and b) the illness is so entrenched that recovery is going to take a much longer time than if the illness was treated by early intervention?

The case of E highlights everything that is wrong with the system and I fail to understand why treatment for eating disorders is neither one thing nor the other.  Treatment needs to be for the physiological as well as the psychological symptoms.  If a patient with depression was refusing food or water after 8 days, would the hospital be refusing to administer life saving treatment in the form of an NG tube or re-hydrating the patient?  I strongly doubt it.

It is time that the medical profession made up their mind about eating disorders and stopped passing the buck to the patient.  The patient is severely compromised both physically and mentally.  Ask yourselves this, if you get an attempted suicide in A&E, do you leave them on the guerney, bleeding to death from self-inflicted razor cuts to their wrists?  If the answer is no, why the hell do you leave eating disorder patients without food and water for days on end?

If you want any more powerful reminder what happens when someone doesn't receive treatment:



Friday, 6 July 2012

Friday Video - Elyn Saks

No fish but First Class castles....

HWISO and EMB are on their way back through some of the worst summer weather, from a particularly frustrating fishing trip.  They have only been able to fish for two out of the four days, as the river is too high.  Total catch: 1 brown trout (catch and release) and 4 trees.

They have been filling their time visiting EMB's dream homes.  She is undecided between the Monday one and the Thursday one.  I am up for a granny flat in either......


Monday, 2 July 2012

Breast Cancer, one year on

This article spoke to me in so many ways.  I have my check up on 10th July and am living in dread of the mammogram.  When you have had your breast cut up, you are somewhat reluctant to them shove them in a machine that is going to squash them and really hurt.  I also know that however lovely my surgeon is (and he is lovely), there is something de-humanising about being the whole examination and the poking and prodding of MY breasts.

However, what reduced me to a puddle and alleviated the loneliness was this:

When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you.

Thank you, Jeff Tomczek, for reaching out.  I appreciate you more than you will ever know.

Sunday, 1 July 2012

The New Maudsley Approach


Although the New Maudsley Approach website is not quite finished, it seems to be helping some of those picky folks on the forum so I thought I would do a bit of promotion on my blog.

Thank you to Pam MacDonald, for her sterling work, alongside all the other Maudsley Carers who devote time and energy for no financial reward to help other parents of children with eating disorders.  A really big shout out to Professor Treasure and Gill Todd for their endless work and devotion and the whole EDU team at the Institute of Psychiatrists.  (Thank you too, for having the daughter for three days.  She loved it).

I am going to reproduce the welcoming paragraph so there is no confusion.  This method is an ADJUNCT approach for families and carers, not a treatment protocol by itself.

The purpose of this website is to give parents and carers of people with eating disorders a “toolkit” to help educate, empower and equip them to deal with the stressful caring role. The New Maudsley model is aimed at families of all sufferers. It is an additional treatment protocol, intended to reduce stress and empower carers by equipping them with a similar skill set to that encountered in an inpatient setting. The New Maudsley model is intended to be used as an adjunct to treatment, as opposed to a treatment in its own right.