Life After Recovery

From Fruit Flies To Anorexia

You never know what you'll get to be grateful for. 

That's a refrain I hear all the time from my best friend, who's lived for more than twenty years with non-Hodgkins-lymphoma, and the other day she sent me news to feel grateful for that truly knocked me sideways.  Several years ago she gave a copy of my book Gaining to her next door neighbor, who in turn shared it with her brother, Eric Aamodt, a molecular biologist at Louisiana State University. Reading the book, Eric was intrigued by the description of anorexia nervosa as a condition with genetic and biological roots.  He shared the book with his colleague, Donard Dwyer, and they got to talking about the possible role of insulin-signaling pathways in the development of anorexia. 

What if, they wondered, there were people who became anorexic in response to starvation, just as there are people whose diabetes is triggered by obesity?  What if anorexia were a metabolic deviation and not, primarily, a psychological condition?

Aamodt and Dwyer spearheaded a review of existing research examining starvation responses ranging from yeast and fruit flies to humans.  The resulting   theoretical paper was published in the journal Molecular Psychiatry [ Download Molecular Psychiatry ], and has been getting quite a bit of press!

In a nutshell, their findings suggest that anorexia nervosa "is primarily a metabolic disorder caused by defective regulation of the starvation response, which leads to ambivalence towards food, decreased food consumption and characteristic psychopathology…initial bouts of caloric restriction may alter the production of neurotransmitters that regulate appetite and food-seeking behavior and thus, set in motion a vicious cycle."

Or, as the popular press sums up the theory: "It's not stubbornness or a mental disorder that keeps anorexics from eating, it's their own bodies."

Here are a few more links to info about the review:
http://www.americablog.com/2011/05/is-anorexia-biological-disorder.html
 
http://jezebel.com/5806626/is-anorexia-a-disorder-of-the-mind-or-metabolism
 
http://www.msnbc.msn.com/id/43196217/ns/health-mental_health/

 

PARTICIPATE IN A STUDY OF RECOVERY!

First of all, I want to thank everyone, from the contributors of letters and sidebars, all the way through to the magnificent staff of the Academy for Eating Disorders -- and Melanie, Lindsay and Leigh, of Gurze Books -- who helped to make our launch of RESTORING OUR BODIES, RECLAIMING OUR LIVES such a spectacular event last Friday night in Miami.  We not only raised more than $20,000 for the AED's  Research and Clinician Scholarship Program, but we also brought tears to many eyes with a staged reading of excerpts from the book that challenge the stigmas and myths around eating disorders.  Our cast of voices included those of a blind woman, a male athlete, an identical triplet, an African American woman, a girl in the outback of Australia, a young woman from Estonia, a mother of four, and doctors and therapists who have histories of eating disorders, as well as the parents and spouses who have such an essential role to play in recovery.  Together we offered compelling evidence that recovery IS not only possible but truly powerful.

 

Now, as the perfect follow-up to our launch, I would like to invite YOU to play a role in advancing scientific understanding of recovery.  I've just received this appeal, from University of Pennsylvania doctoral student Martina Verba, for women (over 18) with long-term recovery from anorexia nervosa or bulimia nervosa to participate in in-depth interviews about the recovery process.  Specifically, she is conducting a study exploring the progression from the early stages of recovery, which are typically characterized by a focus on behaviors, to a fully experienced felt sense of recovery [exactly the progression we trace in RESTORING OUR BODIES, RECLAIMING OUR LIVES!] .

In order to conduct the interviews in person, Martina is recruiting participants from the following geographic areas: Philadelphia area, New York City and surrounding counties (as far North as Albany), New Jersey, Connecticut and Massachusetts. Names and other identifying information will be kept strictly confidential. If you are interested in participating, please call Martina at 914-231-7295 or email at mverba@sp2.upenn.edu.  If you know someone who might be interested, please pass this notice along.

Other criteria for inclusion in the study:

1) Eating disorder fulfilled DSM-IV criteria for anorexia nervosa or bulimia nervosa for the period of at least one year

 

For individuals with histories of anorexia nervosa:

1.      Maintenance of normal weight and return of normal menstruation (unless lack of menses or irregularities are due to medical conditions unrelated to the eating disorder) for past 2 years

2.      “No extremes,” defined as no interference in functioning, in the realm of eating- and weight-related thoughts

3.      No bingeing and purging, as defined by self-induced vomiting, ipecac use, laxative use, weight-loss or diet pills, and excessive exercise in past 2 years

 

For individuals with histories of bulimia nervosa:

1.      No bingeing or purging, as defined by self-induced vomiting, ipecac use, laxative use, weight-loss or diet pills, fasting, and excessive exercise in past 2 years

2.       “No extremes,” defined as no interference in functioning, in the realm of eating- and weight-related thoughts  

 

Thank you for your help. Please contact Martina if you have any questions.

Study Participants Needed: Perfectionism, Self-Injurious Behaviour, and Functions of Anorexia Nervosa

Heads up!  Just received this request for onlline survey participants from the University of Guelph--

Who?
-Current, previous, or suspected diagnosis of anorexia nervosa
-15 years of age or older
-MUST have parent or guardian permission to participate if under the age of 18
-Ability to communicate in English at the 4th grade level

What?
An online survey asking questions about:
- Perfectionism
-Self-Injurious Behaviour
-Pros and Cons of Eating Disorders
-Attitudes Related to Eating and Other Related Behaviours

Where?
- Any computer that has internet access!

When?
-At your convenience!
-Approximately 30-45 minutes

Why?
-To help the community and researchers understand eating disorders better
-To help a Master’s student obtain their degree
- A chance to win a $100 Visa Gift Card! Anyone who completes the survey will be eligible to enter a draw for a $100 Visa Gift Card. The exact odds of winning will be dependent on the number of responses, but chances will never go below 1/150!

Confidentiality will be maintained throughout the course of the study

For more information contact:
Nicklaus Csuzdi (Choose-dee) at csuzdi.masters.thesis@gmail.com OR 519-824-4120 ext. 54822

Potential Participants AND Potential Recruitment or Research Collaborators Welcome

Study Participants needed

Just received this notice for women to participate in a study in San Diego by one of the premier researchers in the Eating Disorders field:

Dopaminergic Mechanisms of Reward and Taste Processing in Anorexia Nervosa UCSD Eating Disorder Research and Treatment Program

Walter Kaye, M.D and Vikas Duvvuri M.D., Ph.D

UCSD Eating Disorder Research and Treatment Program is currently conducting a study examining the affect of Amphetamine on women who have recovered from Anorexia Nervosa as well as women who have never had an eating disorder.

Who can participate?

• Women who have recovered from Anorexia Nervosa and women who have never had an eating disorder ages, 18-45 years.
• Must be medication (birth control OK) and drug-free for at least 3 months.
• Must be recovered at least 12 months.
• Must be in good general health.


The study will be held on two consecutive days on the UCSD campus in La Jolla, CA and will also include two separate medical check appointments prior to participation. You may receive up to $1000 for the completion of the study and we may be able to provide travel funding.

If you are interested in participating, have any questions or would like further information, please contact: Lyndsey Marcelino at (858) 534-8062.

Website: http://eatingdisorders.ucsd.edu/research/index.shtml

Participate in NEDA's College Survey Project

I just received this survey invitation for college students and their families from NEDA. Please participate or forward this on!

Ever wondered if your college (or your child’s campus) offered eating disorder and body image resources? Is there treatment available on campus? Diagnosis? Prevention?

NEDA Announces its College Survey Project to review eating disorder-related services and programs available on college and university campuses. Complete the survey by 12/15 to be entered into a drawing for free NEDAwareness Week Workplace Kit!

Who is eligible to participate?
All college and university campus staff members who are involved in developing and implementing mental health and well-being programs and services related to eating disorders and body image issues on college and university campuses.

Why participate?
By filling out this short 15-30 minute survey, you can help NEDA identify what services and programs are available on campuses around the country for students struggling with, recovering from, and at risk of developing eating disorders and related body image issues.

What is the Deadline?
Submissions must be received by December 15, 2010. All participants will be entered into a drawing to win a free NEDAwareness Week Workplace Kit, complete with 2011 “It’s Time to Talk About It” Posters, How to Help a Friend Brochures, Helpline Cards and Pens!

Be sure your school is represented! Please forward the survey link to anyone who may be an appropriate participant in this study.

*This study has been approved through the Pace University Institutional Review Board.

To complete the survey, click here.

Facing the Complexity of Eating Disorders

 

After you’ve experienced an eating disorder – either as the sufferer or as a family member – it’s natural to assume that you know what this syndrome is all about.  And if you’ve succeeded in recovery , you may even feel that you have the answer.  If one particular treatment worked for you, of course you’ll want to encourage others to try that treatment.

But it’s important to remember that all eating disorders are not alike, any more than all sufferers or their families are alike. 

• Restricting anorexia involves radically different behavior and impulses than bulimia, binge eating, or other less common eating disorders. 
• Some people will only develop one type of ED, while others will engage in all three at different times. 
• Eating disorders often overlap with depression and anxiety disorders and other emotional struggles, which sometimes persist even after recovery from the ED.
• While most people with eating disorders are women, new evidence suggests that one fifth or more are male – and that number is rising.
• While most symptoms first become apparent during adolescence, an increasing number of younger children are developing eating disorders – as are older adults.
• In many cases, the family is able and willing to acknowledge the problem and support the best possible treatment protocol; unfortunately, there are also families that cannot or will not admit the sufferer has a problem or that they have any role to play in recovery.

While there is strong evidence for the benefits of EARLY treatment by an experienced eating disorder specialist, there is no one-size-fits-all TYPE of treatment.  Rather, there are many types and elements of treatment that work differently for different individuals.

As I wrote in my last blog, the latest research shows that the Maudsley method of family based therapy may be the most effective treatment for younger anorexic patients whose families are supportive and engaged in the process.  But this should not discourage individuals who do not have supportive families, or whose diagnosis is a different type of ED.

If you are suffering, the important thing is to seek out an experienced professional to help you understand your illness and your best options. To find an eating disorder professional near you, go to http://www.aedweb.org/source/EDProfessional/

 

New study on Maudsley Method

For years now, we've been watching and waiting for clinical trials to verify what families and treatment experts have been observing in practice -- that the Maudsley Method really is the most effective treatment for many young anorexia patients.  Last week the New York Times reported a new study by Maudsley pioneer Daniel Le Grange at the University of Chicago:

Researchers randomly assigned 121 patients ages 12 to 18, mostly girls, to a year of either family or individual therapy at the University of Chicago and at Stanford — 24 hours in all...Twelve months after the treatment had ended, 49 percent of those who had been in family therapy were in full remission, more than double the 23 percent of those who had been in individual therapy. And among patients who were in remission at the end of the treatment itself, only 10 percent of the family-therapy group had relapsed a year later, compared with 40 percent of those who had individual therapy.

That's pretty impressive, especially given the short duration of treatment -- 24 hours isn't a whole lot of treatment for a life-threatening illness.  But it is important to consider the caveats.  These patients were mostly teenage girls, and all had been ill for no more than a year and were at least 75% of their healthy body weight.  And as a general rule, pre-screening for the Maudsley method excludes families with overly domineering or controlling parents who are unwilling to change themselves.

How does it work?  The family treats food as medicine, and it's the job of the parents to administer this medicine -- and to see that the patient absorbs it.  But there's more to it:

...the therapist sits in on a family meal to observe the dynamics, Dr. Le Grange said. Everyone in the family has a role: siblings are instructed to clear out once they are finished eating, “not jump up and yell at their sister for not eating or yell at the parent.” Unlike traditional approaches, the Maudsley method “says we don’t think the parents are to blame for the problem,” Dr. Le Grange said. “We think they’re part of the solution, and should be center stage.” Their job is to be calm, supportive and consistent.

The ultimate goal of all effective treatment is to equip the patient to thrive on her (or his) own. Strong families not only need to learn how to provide the "calm, supportive, and consistent" base for a healthy childhood, but they also need to know how to release their children to the wider world.

What does recovery look like?

This question popped up on an eating disorders listserv that I subscribe to:

What are we looking for as far as indicators that someone is recovered?

Since this issue lies at the heart of my forthcoming book, I felt compelled to jump in, and after I'd spent an hour or so writing, I thought you might also be interested in this question.  So here goes:

I "gained" a much deeper definition of recovery while writing and conducting the research for Gaining, and that definition has been confirmed over and over again by the hundreds of letters I've received since then.  Dr. Judith Banker and I have compiled many of these letters into a book to benefit the Academy for Eating Disorders -- and to trace the entire arc of recovery from the point of view both of ED veterans and clinicians, who also contributed to the book.

The short answer, which Dr. Amanda Weishuhn and I just presented at the NEDA conference, is that recovery seems to occur in four basic phases:

1. The turning point -- when the sufferer SUBJECTIVELY reaches the limit of distress and makes a personal commitment to change. There may be one or several turning points initiating incremental change, but they have to come from within, not from outside demands or threats. The dominant emotion of our correspondents at this stage is fear -- of the eating disorder.

2. Treatment.  As a member of the 60s generation that had no treatment available when ill, I firmly believe that you can recover physically without treatment, but that you are highly likely then to remain in the psychological "half-life" of the eating disorder -- and highly vulnerable to relapse -- until effective therapy occurs.My research and experience both tell me that treatment is an essential phase of recovery. The dominant emotion of our correspondents at this stage is tentative hope.

3. Restoration. This phase follows treatment and lasts as long as it takes the body and psyche to "catch up" to the developmental stage of body and mind before the eating disorder began.  It's a stage that I liken to delayed adolescence, when the body and brain scramble to get back to what they last knew as normal. The dominant emotion of our correspondents at this stage is optimism.

4. Discovery.  After delayed adolescence comes the equivalent of a healthy normal young adulthood, when the whole person catches up on the process of true maturity.  It's at this stage that the individual really resumes the ultimate work of developing those essential character traits -- cooperativeness, self-directedness, and self-transcendence -- that allow identity to integrate fully and thrive.   The dominant emotion now is a complex of joy, curiosity, and exuberance.

 

We also got letters from folks in what I dub the "plus-phase", or Wise Mind stage.  It's not actually a phase of recovery but of perspective that comes after many years of genuine health, especially among people who have remained in touch with the field -- as writers, therapists, doctors, or activists.  The dominant emotion with long term recovery is a kind of calm and mindful acceptance, as opposed to the various forms of denial that can accompany the early stages of recovery.

Of course, we'll have much more detail in our anthology, RESTORING OUR BODIES, RECLAIMING OUR LIVES, to be launched at ICED next April.

Bottom line: Recovery IS possible and COMMON, but it takes lots of time, patience, and faith in your ultimate self.

 

The Fallacy of Fasting

I listen to the NPR radio program This American Life as often as I can, but not until today did my fascination with the show’s wacky insightful way of observing the world coincide with my fascination with eating disorders.  Today, in pursuit of the spiritual “enlightenment” that’s supposed to accompany fasting, contributor David Rakoff embarked on a 20-day guided fast to see if he could find nirvana through restriction.

I was particularly interested in this because, some years ago, a member of my meditation group embarked on one of these Web-driven fasts.  She was talked into it by friends, resisted in the first week, lauded it the second, and became visibly sickly and defensive the third.  When I told her I was worried about her because the fast had made her gaunt and the hunger high she was experiencing could be an invitation to anorexia, she looked at me with an expression that can only be described as hatred. I recognized that expression too well; she’d become both hostage and guardian of her brain’s starvation.

So I was curious to hear what David Rakoff, a self-acknowledged skeptic, had experienced on his journey to “purification,” which, by the way, cost him $300.  That fee was paid to the Internet shyster who promised nirvana in exchange for deprivation aided by enemas and “special” elixir recipes designed to “detoxify” the body and restore “balance.”  Rakoff’s radio journal tracked what sounded to me like a 12-step program into an eating disorder.

1.      Surrender to the higher power of an online Oz who proclaims fasting to be the Ultimate Key to Perfection.

2.      Follow in lockstep Oz’s rules and regulations for self-deprivation and abuse.

3.      Defend the ideal of restriction from all objective and rational detractors.

4.      Utilize guilt, shame, pride, and fear to override the physical, emotional, and psychological weakness and pain caused by hunger.

5.      Interpret the lightheadedness and emptiness of prolonged hunger as “clarity” and “wellbeing.”

6.      Embrace the all-consuming self-absorption and self-involvement that results from self-induced starvation as an earned privilege –even an attitude due to the superior “specialness” of those who are able to persevere on a fast.

7.      Enjoy the illusion of separation and disengagement from anxiety as the body’s normal reactivity to stress gradually fades away. Even if the slow reaction time does put the body in some physical danger, the mind won’t notice.

8.      Value the “success” of staying on the fast above any other accomplishments that might have been achieved with this same time, energy, and discipline – it’s not what you actually do with your abilities that counts, it’s the fast-induced feeling that you could achieve anything.

9.      Discount or deny the abundant scientific evidence that the mental and spiritual “benefits” of fasting are, in fact, caused by the brain’s forced metabolic shift from carbohydrates to ketones as fuel – and that the “clarity” that follows initial hunger pangs is, on an evolutionary basis, designed to enable the starving body to survive until the food supply resumes, not to voluntarily prolong starvation.

10.  Seek evidence of enlightenment in every waking moment, thought, perception, and experience and, should anything beautiful or out of the ordinary occur, credit it to the fast –never mind the possibility that this same level of focus brought to a well-nourished body might actually produce equally or more rewarding breakthroughs.

11.  Reach out to others who admire you for fasting, who will reinforce the belief that depriving the body somehow elevates the soul and improves the spirit – and of course, dismiss or avoid anyone who says you look like you have cancer.

12.  Notice how challenging it is to return to eating after a long fast, and marvel that even a single apple can taste like a feast.

 

I have to note that Rakoff touched on these pointers without necessarily submitting to them all himself.  But if he didn’t actually feel them, he noted that others seemed to or that the message had gotten through to him that he was supposed to feel or abide by these rules – all of which, by the way, I vividly recall pumping through my mind when I was in the throes of my eating disorder.

Rakoff’s conclusion was that he “failed” at his fast because he didn’t “feel” the spiritual ecstasy that he was “supposed” to.  Based on my own research, I’d take this as evidence that he didn’t have the genetic predisposition for an eating disorder, and he should count himself lucky in that.  Also, it seems likely that the sources of anxiety in the rest of his life were not existentially threatening; if they had been, he might have embraced the disengagement (#7) he felt through his fast as a solution to his problems.  People who fall prey to eating disorders tend to be drawn into ED’s self-absorbed cocoon as a sanctuary from overwhelming distress that they feel powerless to confront. 

My takeaway from Rakoff’s report is that fasting doesn’t cause eating disorders, but it does invite them.   All these online con artists taking money to “help” you fast the “right” way are promising nothing more than the human body’s natural response to deprivation. And just as some people’s bodies respond addictively to a taste of alcohol or a single pill, others are primed by experience and genetics to turn a “healing” fast into a potentially lethal eating disorder.  Fasters beware.

There’s a poignant moment in Rakoff’s piece when he hears a woman on the subway asking her fellow passengers if they have any food to share.   He’s too embarrassed to tell her exactly why he doesn’t, and in that painful split-second of truth the fallacy of fasting explodes. 

 

Climbing ED Mountain

Apologies for the long delay since my last post. I’m just back from the annual Academy for Eating Disorders conference , this year in beautiful Salzburg in the Austrian Alps.  Perhaps that location helps to explain why keynote speaker Kelly Vitousek  raised a provocative comparison between eating disorders and extreme mountain climbing.

The spark for Vitousek’s talk was a search of ED websites that kept turning up the phrase, “It’s not about food or weight.” As a cognitive behavior researcher, she had trouble with this idea, which she read to mean, “ED has nothing to do with food or weight.”  We could quibble about the semantics.  Of course, the SYMPTOMS of EDs are ALL about food and weight, but when I hear, “It’s not about,” I assume we’re looking for root CAUSES – and personally I don’t believe the root causes of EDs are about food or weight – they’re much more deeply emotional and human in nature. The preoccupation with food and weight is merely the portal, the indicator of profound existential distress. Vitousek never mentioned this critical word “distress” in her talk, nor did she mention triggers.

However, when she started to make comparisons between ED and other obsessive self-endangering pursuits, I was intrigued. One specific analogy was to extreme mountain climbing.  This seemed to me a terrific metaphor and parallel to ED.  Extreme mountain climbers subject their bodies to circumstances almost guaranteed to harm them in a quest to reach a dangerous ideal.  Not only is the training program beyond the realm of ordinary mortals, but the combination of cold and oxygen deprivation at great heights usually causes permanent brain damage.  Not to mention the risk of falling off a cliff or into a crevasse.  Vitousek pointed out that the mortality rate for extreme climbers is 60% -- far higher than the mortality rate for anorexia nervosa.  The greatest threat comes from oxygen deprivation, and yet “purist” climbers look with contempt on those who summit with oxygen tanks – much as anorexic “purists” view the intake of even minute portions of certain foods as “cheating.”  In both cases, needlessly perilous standards for performance are set as competitive criteria, then elevated to ideals.

A friend at the conference told me of her practice, at the height of her anorexia, of rising in the middle of the night to run for hours before she took her children to school.  Now she recognizes this self-imposed rigor as an indicator of her eating disorder, but in light of Vitousek’s talk about the context for distinguishing between “extreme sport” and “disorder,” I could see just how easily we might applaud such extreme running discipline in a woman who labeled herself an “extreme marathoner.” The context in which we view self-endangering behavior plays a critical role in determining whether we are impressed or alarmed by it.

The context in which we view eating disorders is a culture as obsessed by food and weight as people with eating disorders are.  Thus EDs in our midst are routinely ignored; extreme cases of anorexia or bulimia attract fascination or even applause (think tabloid headlines and cover shots); and BED is stigmatized as a loss of “control,” rather than acknowledged as an existential warning sign.

In this context, the primal human needs for nourishment, care, and connection are overlooked as easily as the human needs for oxygen, warmth, and blood flow are in the extreme mountaineering community. Individuals stake their lives on attaining ideals that defy human existence, believing that this attainment – and this attainment alone – will gain them a sense of genuine satisfaction.  Even if they reach the top of Everest, climbers can only stay at the top for a few seconds before they have to descend. And the descent is often more dangerous than the climb – just as the process of recovery can be scarier than the slope that initially leads to the artificial high of an eating disorder.

Just as EDs are not “about” food and weight, I suspect that extreme mountaineering is not ultimately “about” rock and height.  Both are quests for life-threatening ideals that appeal to people who are obsessive and compulsive; who may be fixating on these goals as a means of NOT addressing other, more emotionally draining aspects of their normal lives; who may feel that achieving the impossible is the only way they can gain respect or be heard.  Both, in other words, “speak” to individuals sharing a similar set of temperamental traits.  The girl who becomes anorexic might, given a different context, become an extreme climber – and vice versa.

In cultures that openly acknowledged, valued, and understood the language of primal needs – instead of ignoring or twisting this language, as ours does – both behaviors would be read as aberrational signals of deep human distress. They would attract concern and attention, support and care, and restorative human connection. 

Sadly, that’s not how we react in our culture.  Strangers, friends, and even family all too often simply stand back and watch in horror, shock, and/or awe at the spectacle of self-punishment, as if they have nothing to do with – or for – the pain that underlies it.