December 31, 2009
December 27, 2009
December 25, 2009
Sometimes the calls are from parents who have just discovered the illness. These calls are a relief for me and the parent: I know where to point them. Good science, good clinicians, an empowered and well-informed family and EARLY INTERVENTION is the quickest path from terror to effective action.
What frightens ME is how many of these calls are from parents who are not new to the topic of eating disorders but are new to the things I'm telling them. In the past month I've talked with three mothers of patients who have seen a series of eating disorder experts and NEVER HEARD OF THE MINNESOTA STARVATION STUDY. Not ever heard "brain disorder" or "genetics" or "Maudsley." Never been told that the family CAN do anything except drive their suffering child to a doctor's appointment. Despite asking and going to appointments and going to ED sites and reading books these parents have not been provided with a choice to respond in a different way. These parents did not know that a semi-starved brain is being damaged and that damage causes mental symptoms like distorted body image, social disconnection, fixation on food, OCD behaviors, or that for those with an anxious temperament even a low level of malnutrition is a self-medication that becomes nearly impossible to forgo.
I'm angry, angry, angry that these parents are not given the information or the choice to respond in a different way. I'm furious that parents who would have acted early and assertively are robbed of that opportunity because people who are ignorant of newer information - or reject it - don't give these families what they deserve: the knowledge that eating disorders are a TREATABLE ILLNESS and that parents and families have enormous power and unique abilities.
My anger and frustration are continually washed away, however, by two things. One is the bravery of these parents who keep searching and once they hear of better information are willing to do what needs to be done. The other is the growing community of parent activists and clinicians and patients who are changing the face of this illness through talking and writing and blogging and mentoring and treating and volunteering and donating and innovating and holding support groups and bringing information to doctors and schools and bringing this illness into the modern era where it belongs. Lives are being needlessly ruined and lost due to ignorance - not just the illness. To my fellow activists and to the brave lady from last night who said that the information she just got from F.E.A.S.T. is the best Christmas gift she could imagine - my gratitude and my best wishes.
December 24, 2009
December 23, 2009
4am woke up
5am family left for train station
6ish arrived station
8am me and the kids supposed to start our 9 hour train ride to grandma's
8, 9, 10, 11, 12pm all trains at standstill for unknown reasons, not cancelled, no news, every once in a while a train to somewhere is boarded and leaves but ours..... nothing.
12:40pm our train pulls out of the station
5pm conductor announces that train will end service the station right before ours, but busses will be there to take us to our destinations
8:30pm we arrive and unload bags and go out in the cold to busses. All busses are waiting but the one to our destination. They don't want us to wait in the cold, but it is too far to walk to the station, so we are instructed to drag our bags and selves back onto the train to be pulled into the station. We do so, unload, wait in station.
8:45pm train staff leave for the day, assuring the room of 20 travellers that "someone" will come get us when a bus arrives. The silence is deafening.
9:15 a bus arrives
10:15pm we arrive at the station that we should have been to at 4pm.
But ya know what? My husband got us to the station despite the blizzard fallout and got us put up in the lounge all morning and missed work as he hung out to see what would happen, my daughter reported that her brother was "great" throughout and that I was "good" (for the record, she was "GREAT"), the train staff tried, our fellow travellers were patient, my mother took my update calls with good humor, my father was willing to come down to the station to get us no matter what time it was, and we're HOME at grandma's house.
December 17, 2009
I was so glad to see the Eating Disorder Coalition's publication advising against these screenings, and so pleased that the F.E.A.S.T. Board of Directors has voted to support it:
December 13, 2009
- I like seeing different eating disorder organizations collaborating - this is a trend I'd like to see continue.
- It is important for the eating disorder world to take a stand against the growth of weight prejudice.
- I'm weary because when I try to talk about eating disorders people want to talk about the unhealthiness of fat.
- I love this phrase "focus on health and lifestyle rather than weight."
- I hate that the above draws blank stares from people because they assume fat people behave unhealthily and thin people behave healthily.
- Blogging is easier when other people say what you are thinking.
December 12, 2009
Here's one - and it is available now:
I hope you are doing well? Maybe you remember me and my project "Get-Connected" -Caregivers are the experts. You helped me a couple of months ago to find therapists who are interested in supervising and guiding a chat-group. Thank you very much again! That was very helpful.
With your help we are now forming a team of 14 therapists (8 from the US, 2 from Australia, 3 from the Czech Republic and me from Germany) around the world who are now offering Maudsley-based chat-support groups for primary caregivers (parents, spouses partners) and have now started the recruitment for our chat-groups.
If you want to have a look on the website, please click here:
Best wishes, Annette
Dipl.Psych. Annette Mehl
Psychiatrická klinika 1 LFUK a VFN
Ke Karlova 11
12 000 Praha 2
December 11, 2009
December 10, 2009
When you spend time in the ED world you cannot help but notice how often you see certain traits in patients, many former patients, and often in family members. Things like difficulty with 'set shifting,' a blinding focus on detail, and difficulties with correctly interpreting the emotions of others. There is a lot of talk now about a connection between autism and anorexia. My first question, of course, was whether these autistic traits were present before anorexia struck, and whether these traits offered new directions for psychological interventions, and whether these traits were affected by malnourishment.
So if these results, Emotional Theory of Mind and Emotional Awareness, stand the test of further research and many of the autistic traits that predispose and maintain the disorder turn out to be "a factor of starvation" this begs the question: will this open a new avenue to understanding autism itself? Could autism - often associated with food aversions and sensory issues - be better treated nutritionally? That is certainly something many parents believe, and they are the ones living both alongside and observing their children.
The paper mentioned above also adds to what should be by now sufficient evidence that "food is medicine" and needs to be the first-line, non-optional, and urgent first step in eating disorder treatment. It pains me to know that it is still 'controversial' to say that ED symptoms are driven by malnourishment, and that most parents are not told this at first diagnosis.
Again, I think we will learn a great deal about eating disorders by looking at other fields, and the reverse.
December 9, 2009
If you're not, you didn't get to read the recent newsletter with a podcast interview with the author of a recent book that describes a family discovering their daughter's anorexia, and the family's discovery of the Maudsley approach. It's not too late...
Membership in F.E.A.S.T. is free of charge, as are all of our services, but we do need financial support to do our work. Although we are all volunteers and all our indirect costs are donated, there are website, insurance, travel, and administrative costs to cover every month.
We need your help! In the month of December we are asking our supporters to become Supporting Members or Founding Members of our organization.
www.feast-ed.org/feast/joinfeast.html if you are not yet a member
http://www.feast-ed.org/upgrademembership.html to upgrade your membership
Being a member at any level lets us know who we serve, and lets the world know that parents are joining together to press for improved treatment and family involvement in treatment. Join us at whatever level you can!
December 8, 2009
Around the Dinner Table Forum : "Help--refeeding and now D cannot function with life"
December 6, 2009
My friend, Katja**, has a great column on this:
Talking to Your Kids About Food:
"We teach nutrition best by serving and eating the foods we want our children to eat."
**For more on Dr. Rowell and her practice in Minnesota: www.familyfeedingdynamics.com and her blog at: http://www.familyfeedingdynamics.blogspot.com/
December 3, 2009
The American Journal of Psychiatry Childhood personality and temperament traits, which tend to be relatively mild, appear to contribute to a vulnerability to development of an eating disorder . Such traits may become intensified during adolescence as a consequence of the effects of multiple factors, such as puberty and gonadal steroids, development, stress, and cultural influences. For anorexia nervosa, there is a dysphoria-reducing character to dietary restraint. In contrast, for bulimia nervosa, overeating is thought to relieve negative mood states. But chronic pathological eating leads to neurobiological changes that increase denial, rigidity, depression, anxiety, and other core traits, so that patients often enter a vicious circle. This results in a out-of-control downward spiral whereby a significant proportion of patients develop a chronic illness or die. Fortunately, a substantial portion of those with anorexia nervosa and bulimia nervosa recover by their early to mid-20s, although mild to moderate degrees of temperament and personality traits persist, often with positive attributes."
All else, as a great philospher said, "is commentary." The above paragraph is all we need to know, really, to re-orient ourselves and steel ourselves to the task and be OPTIMISTIC. Well, some of us also need it translated into English, but that's what good clinicians and advocacy organizations are for.
This elegant diagram paints the picture:
I don't know if they give a Nobel for this sort of thing, but from where I'm sitting I think we should start a new prize called the "Kaye Award" and give it to Dr. Walter Kaye first.
November 30, 2009
Luckily, someone managed to grab your file cabinet and saved it from the flames. Luckily, you can afford to rebuild. Someone lends you an office for a while, and it is only a matter of time before you get back into your new office. You're lucky.
But the files in your cabinet have all had their dates erased, and they've been taken out of their folders and shuffled at random. Some of the most important files are missing, or are a version from weeks or months ago. The borrowed office is arranged differently and doesn't have the same appliances - and those that are there aren't integrated with one another. Your new office will need new cabinets, and you will need months to put all the papers away.
Meanwhile, you had other plans for the coming weeks of transition and reorganization. But you know you are lucky. And the new office will certainly be a fresh start.
How does it feel? Well, this morning I had to go get a tooth drilled at the dentist and I found it a welcome break from the slow-moving disaster on my borrowed desktop. I'm just saying.
November 26, 2009
Rethinking Treatment of Food Phobia and Fear of Swallowing in Children
Thank you, Dr. O'Toole! I'm really honored to have played any part at all.
November 24, 2009
Almost all the data can be retrieved from offsite backup, thank goodness, though tediously and at no small expense.
Irretrievable: all my settings and bookmarks, and two incredibly important documents, and the time it will take to reconstruct my "office."
Funny how my laptop is now my workspace, my communications, my entertainment, my organizer, my calendar, my calculator, my news source, my contact with friends, my eyes my ears my dashboard of life.
I am email-less, Skype-less, calendar-less, lacking an address book and until I get my computer resurrected or replaced I am an itinerant computer user and all the "to-do" lists of the days to come are now the "can't do" list of the week. If you've emailed, I can't see you. If you've Skyped, I didn't hear it.
This may be a holiday week for me in more ways than one! Feeling grateful: that I backed things up, that I have another computer to borrow, for my printed cheat cheat of passwords, that my friends and family will understand and even cheer, that computers don't have feelings, and that it is just a computer.
November 23, 2009
For their Thanksgiving feast, they buried the birds
(I have known the boy in the crazy hat since he was learning to walk, and he makes a mean cranberry relish that was the hit of brunch in our neighborhood this weekend!)
November 21, 2009
Imaging, Genetics, and the science of psychotherapy
“There is a science to psychotherapy. To think that biological psychiatry would do away with psychosocial treatment is naïve. We'll do it in a more informed way.”
November 20, 2009
"Food might not be addictive on its own, but prohibiting it can set off a cycle of anxiety, craving, and overconsumption that for all purposes looks like addiction."
Because I don't care. I find the opinions and actions and health of models irrelevant to eating disorder activism. What DOES concern me is a tragic over-valuing of the role of the media and a conflation of what that world does to healthy people (not good) and the symptoms we see in the mentally ill.
Modelling surely does attract and exploit very tall thin pretty people, and does cause slightly less naturally tall thin pretty people to do unnatural things to compete with the former, and without a doubt attracts lots of people whose mental illnesses make those unnatural behaviors a resume-plus.
But the attraction to modelling, and to staring at and comparing oneself to models, is a symptom. That fascination is a symptom of a silly and self-destructive part of modern life for otherwise mentally healthy people. The compulsion, however, is a symptom, for some people of mental illness. Symptom, and not cause.
Home improvement magazines and household cleaner advertisements do not cause OCDs. They attract those WITH these brain patterns. For the rest of us, we just struggle to keep up appearances or suffer fits of dismay at how we fall short. People whose brains are healthy are usually able to distinguish a sales pitch from realistic house management.
When Martha Stewart shares her tips for homemade lemon cleanser we all know she has a staff to think this stuff up and do it for her. OCD advocates don't call for her head because of her unreasonably tidy TV studio. When a model professes a devotion to thinness we should know that that is what she is paid to do and be and that this set of values are the only reason she blights our news feeds and screens. The fashion industry doesn't cause eating disorders, it exploits them and the mentally healthy who try to live on green salads and cleansing fasts in pursuit of thinness.
We should refuse to care what purveyors of self-mockery say or do and expend our outrage on the maddeningly unhelpful comments of those who really should know better: those speaking of eating disorders as if they are just incorrect thinking and mistaken priorities. This approach strikes me as terribly cruel to patients and undervalues THEIR heroism and hard work to recover.
November 19, 2009
Eating disorder patients often become manic gum chewers, and you may also remember that chewing gum with sorbital has been associated with gastro problems and severe weight loss.
So many things parents need to know as they try to help loved ones recover!
November 18, 2009
Salzburg Congress Conference Room
Seriously, if you live near London or Salzburg, I'd love to meet you. Come to EDIC or ICED! Or both. But drive carefully.
November 17, 2009
I got pretty sharp rebukes from two gynocologists during my 40s when I questioned my yearly mammogram prescriptions.
I can think of another women's health issue, HPV testing and cervical cancer, where I was bringing information to gynecologists about it for years and being looked at like a nut before the recommendations changed and all of a sudden I was a forward-thinking nut. This, of course, bought me no extra credibility when I brought up other issues. Like eating disorders. But I digress.
This is not to say that every innovative or contrary idea - especially the defeatist conspiracy-theory anti-establishment doctors-are-trying-to-kill-us stuff - has merit. But it is a reminder that consumers need to combine clinical consultation with a good personal grounding in science and wide reading in healthcare. Being a good consumer sometimes means deciding to say "no," seeking second opinions, and speaking up. Until all doctors give the same stellar and universally correct advice, we still have to be smart consumers.
November 16, 2009
Marcella: Vote for Carrie!
Brilliant idea, Marcella! I voted for Carrie, and happily. She is my favorite blogger by far, and for many reasons.
VOTE FOR CARRIE! It's free, non-toxic, kind, and a good cause. Will make you smarter, happier, lower your cholesterol, and probably make you rich quick!
Really, where else do you get stoats AND hypoxia in one place?
November 15, 2009
I also come from pessimistic stock, but because I am my mother's daughter I tend to put that outside the frame. The price of optimism is a willful refusal to see the negative.
In the past week, I have been thinking of two dissimilar situations and finding them alike. A friend of mine is dealing with, and blogging in real time, her husband's cancer diagnosis and treatment. The community around her - the woman has a fiercely loyal band of supporters in several states and levels of virtual space - is mostly only able to help by encouraging her. The word "brave" comes up a lot. We all cheer. We all admire her humor and "bring no tissues" attitude.
At the same time a mom who is part of my online daily life and that of an online community around the world is struggling with two very ill children, either of whose needs could easily submerge an entire team of mothers, receives nothing but praise and admiration from people all over the world who all recognize the heroism and fragility of the situation.
And yet the comment that keeps coming to mind for me as I chime in with both communities of friends around these two women is the comment of a third mother: "Maybe all this talk of heroism is keeping her from seeking more help."
When we call someone a hero and "a role model" and say "when I see what S is enduring I know I shouldn't complain" do we risk making things worse?
Are we cruel to say "keep going" when we could be saying "enough?" Is it enough to tell S to have a glass of wine, that she puts us to shame, that we would "never be so brave." Are we enabling a "superwoman" attitude when we should be dolphin-nudging to "put your oxygen mask on now and call in more troops."
I wonder also at the effect on others with situations that on paper may not seem so dire as cancer or repeatedly hospitalized children but are nonetheless at the end of their own rope. Is optimism and a refusal to think negatively also a way of waving off our fears, of minimizing our own distress? Yet it strikes me that action-less optimism may simply be the only appropriate tool for those watching from the shore.
I confess that I did - still do - at times rebel against my mom's optimism. When I despair I can feel criticized by her sunny outlook and add resentment at letting her down to my troubles. I wonder how frightened I might have been had my pessimisms succeeded in bringing her into my dark point of view. Perhaps I would have, contrary creature that I am, turned on her pessimism in perversely positive rebuke.
That is not a theory I plan on trying with my friends, however. Unless I can be there to take responsibility for the fallout, I shall stick with optimism. And oxygen mask analogies. And yes: admiration. Instead of turning negative, I will remind myself that my little positivities may be all I can do but they aren't much.
November 14, 2009
"Recipe to kill ED (it's a difficult but I think a pretty fool proof
- Get weight up to healthy target range.
- Keep weight in that range.
- Do not lose weight again.
- Do not allow purging or bingeing.
- Keep sufferer safe.
- Get treatment for other psychiatric conditions.
- Teach new coping skills. Don't just tell her to use other coping skills! She
may not have any-if not, she needs to learn them. (My d only had gum chewing
when we started-now we have lots!)
- Be supportive and encouraging!
- Let your d know you are optimistic she is GOING TO have a normal life, and
it won't be in 20 years from now!"
November 13, 2009
Now data show water on moon.
There are lots of things we don't "know." Or only a few people know, and most people don't believe them. Most important things, especially in science, are initially scorned. That didn't make those ideas wrong - there was water on the moon all the time - but it should make us all a bit humbler.
And yes, I am thinking of a bunch of stuff that I "know" and try to help others see. I'm also thinking of what moon water I'm missing. What does it take to turn skepticism to belief, or knock a belief out of place?
November 7, 2009
“Psychiatrists know about the latest drug trials, but they don’t always know about the latest clinical trials of psychotherapy"
How important it is that we not operate on the extremes, or in little niches. The progress in science and society should result in better outcomes and collaboration, not pendulum shifts that serve no one.
November 6, 2009
But I loved it. We need more of this thoughtful and intelligent higher level explanation of the disparate threads of knowledge out there. We need to get out of the ED world and get others to take up the ED information.
I can't wait for Part 2.
November 5, 2009
November 4, 2009
November 3, 2009
D's memory of first refeeding meal
If parents knew from the start that the disease LIES and the patient needs us to take the long view and not take anything personally... imagine.
November 2, 2009
Am I the only one who finds it perverse that the two things I've volunteered to do this year are for Donut Day sales and this health screening?
The Donut Day stuff cracks me up, because we've got this simultaneous dual message going on in the schools: Don't be fat! Buy a box of donuts! Don't eat junk food! School spirit equals eating donuts! Fun equals donuts! Don't eat! Eat! I am the only mom who isn't making comments about guilt and my backside and eating the whole box and skipping dinner. With every donut I say "Enjoy!"
The vision and hearing screening interests me, too. I hate to think that I'm volunteering in search of blog posts, but it is impossible to sit at the screening table and watch these young kids getting their eyes and ears checked and not compare it to the weight screening that also goes on in some schools. (Not ours. Over my dead BMI.) These kids are nervous as they approach the table, it's crowded in the trailer and the kids are self-conscious. They don't want to get it "wrong" and you can tell they think others are judging. They whisper their answers. They don't know which way to go, they confuse right and left. Poor dears.
One girl an hour ago looked close to tears as the Lion's Club guy came and did a re-check, asking me at full volume (he wears a hearing aid) "did she get those all wrong?" Then taking her sheet and telling her she can go now - without explaining what was wrong or how anyone would follow up.
I remember once my daughter heard the dentist say her molar development was "immature." She was crushed. We should be careful.
One girl didn't get all the numbers right and gushed "I just don't want to get GLASSES." I looked at her - through my glasses - and assured her they were fun.
One boy sat down ready to rumble: "I only missed two last time." "It's not a competition" I said.
Kids want to do well, and they don't want to look different or weird to their peers. Even a vision/hearing screening can be worrying and chaotic. The screeners are not necessarily reassuring and polite or thoughtful (I am, I hope, but some people are insensitive or dismissive. Others are sitting there worried about being judged by the other adults in the room - the testing procedure is tough to get a hang of. We got five minutes of training before the kids started filing in, and 'mistakes were made.'
I was, quite consciously, thinking of body mass/weight/fitness testing in schools as I was doing this - thinking about how I do help with one and would never with the other. The biggest difference, of course, is that the stigma of having poor vision or hearing is nothing compared to that of weight. The second is that vision and hearing screening can actually lead to health interventions that are real and helpful (there are no weight interventions for children, nor do we really know whether weight tells us much about health).
The greatest difference is this: telling a child she needs glasses won't lead her to do dangerous things to her eyes, or cause her to blame herself. That boy who beats the hearing test isn't going to be told he should be proud of himself for giving himself superior ears.
I'm going back now for another session. I feel especially gentle and careful to these little souls with their health sheets - for reasons they don't even know.
I like donut day better, even with its mixed messages.
** I'm back. Yes, there were some kids who come through there and clearly no one knew they could barely see with one eye or that they lacked peripheral vision. Yet on reflection I've decided these screenings aren't a good idea. Health measures shouldn't be done in a public assembly line, and amateurs shouldn't be doing the screening.
November 1, 2009
If you prefer, you can email your comments and ideas to Laura@FEAST-ED.org.
October 31, 2009
"The Power of Expectations" by Dr. Ravin
And a heartbreaking reality:
"The therapist tells the patient that she must unravel the roots of her problems, and that it will take many years for her to recover. It does. "
The ending is profound:
"Bad therapy is not just ineffective – it has the potential to be every bit as harmful as a surgical error."
Now, for a moment, imagine the power of GOOD therapy!
October 30, 2009
Okay, I should not take the bait on this, but since I subscribe to a lot of news-feed services this "study" keeps landing in my inbox with a trail of increasingly offensive headlines.
I am painfully aware that families often get their information about healthcare issues from articles like these, and worse still that these types of pieces are what help form public opinion and mother-in-law conversations and the tsk tsk over coffee among one's friends when one is not there.
So, I'll take the bait.
This is not a "study." This is a poll of magazine readers. Polls are not science, they are not representative of the population; they tell you something about the market of that magazine.
Correlation is not causation. Both moms and their daughters are under similar and related pressures to diet.
The culture of dieting runs in families and social groups.
Eating disorders run in families - one's risk is 50-80% determined genetically.
Dieting is not the same as eating disorders.
Why do I expend so much energy trying to refute this kind of thing? Am I just hellbent on defending parents no matter what? Have I no sensitivity to the toxicity of a dieting environment and the influence of mothers on their daughters?
I spend energy on this because I AGREE that no one should be dieting, that some parents are terrible role models, and that an environment of dieting and body hatred is toxic. The question is whether an eating disorder is a sign of those things - and I would argue that an eating disorder is not a sign of anything except a predisposition to respond to dietary restriction/energy imbalance with a self-perpetuating mental illness.
When we admonish moms for dieting - something that our entire society is actively and delightedly and almost religiously ENCOURAGING - because it causes eating disorders we make two mistakes. One is that an ED diagnosis becomes a witch hunt for the bad influences in one's life when there is no evidence whatsoever that this helps prevent or treat an eating disorder: none. The second mistake is in mistaking dieting for an eating disorder.
Dieting is a choice, but the eating disorder that may be activated by a diet is not. None of us should be choosing dieting, in my opinion. Dieting is well-known to be futile, unhealthy, depressing, and sucks the life and fun out of life and our relationship with our body. Using food to change our bodies, our appearance, or our emotions is an inherently unhealthy activity whether or not you have the genes and biology to become horribly mentally ill as a result.
Moms need to be freed from the overwhelming pressure to diet and feel aesthetically inadequate, period. Moms need help learning and learning to model loving their bodies and their appetites and their biology - as do dads. Eating disorders cause horrible suffering for a small percentage of the population, which we then go on to blame on being too influenced by toxic surroundings - a horrible injustice. But dieting and our body-hating food-phobic culture hurts us ALL, and it needs to be stopped for its own sake.
I fear it is futile to rant like this, though. Even my friends and family don't get it. But thank goodness for blogging, it lets me say it anyway.
In parting, I'll leave you with the sidebar articles to the piece above - which tell you more about the reality of the blame-mommy-for-dieting-tell-mommy-to-diet culture we live in:
Hospital admissions for obesity more than triple
Junk food as 'addictive as drugs'
Exercising with a friend 'helps to lose more weight'
Diabetes jab better than obesity drug at cutting weight
Anorexia victim offered place at Cambridge University dies at 18
Blame Mummy, not Madonna, for low self-esteem in girls
October 29, 2009
With a picture of scary Laura from a recent Halloween:
And yes, that is green flourescent eyeshadow. You'll have to imagine the black velvet hooded cape. Always wanted one as a child, but now I have an adult-sized credit card.
October 28, 2009
Well, there's a reason for bleeping out the words we use on those occasions: cussing is a pain-reliever especially for women.
Two stalwart moms I know mentioned the therapeutic need to yell a blue streak as things "went pear-shaped" yesterday. In their honor I declare today as Curse at ED Day. For all the parents around the world who could use a good yell into a pillow, cry in the shower, speaker-damaging decibels on the car radio, or just a bracing round of 'f*&^%$ you ED' today, a tutorial:
(cover baby's ears)
October 26, 2009
"I am interested in interviewing an individual for a class assignment who has either been directly affected by an eating disorder and/or a professional who is working in patient advocacy regarding their experiences surrounding prevention, recovery and the disease itself. The interview can be conducted in person if they are in the Baltimore area or over the phone, whichever works for the interviewee. The interview itself will last about 30 minutes and will be completely confidential. This is only for class purposes and will not be published. Thank you so much for your help!"
If you are interested in helping this student, I'm happy to pass her information on to you. First come first served!
*** Added: Found someone. Thank you to those who volunteered!!
October 25, 2009
October 23, 2009
If you didn't get that email, it's time for you to become a member.
The newsletter has information on an exclusive audio interview with an author of a new book by a Maudsley family, and announces a new service available at the F.E.A.S.T. site - you don't want to miss it!
October 22, 2009
October 21, 2009
Is Close reading my blog?
(And if so, why can't people add "eating disorders" to the list of serious mental illnesses when they list them off. Too many syllables, I guess. We need a shorter name, people. Work on that.)
October 20, 2009
A comparison of stigma toward eating disorders versus depression
October 18, 2009
He's wrong about pretty much everything else, of course. His clothes and his industry and his ability to get people to prance about in his clothes and get other people to watch all disgust me. His belief that beauty belongs only to the ectomorphic is patently wrong. His disparagement of 'fat mummies' makes me want to change my blog name to "Fat Mummies Unite" and wonder if being a Fat Mummy bestows some special wisdom to see through the nonsense.
But: low weight is no more a thing to be disparaged and pathologized than small ears or unusually red hair. It doesn't solve the problem of our bizarre fixation on a very small sliver of the population (very tall, very lean, large eyes and heads) to turn it back by insulting those body types. Thin is not anorexia. Fat is not an illness. Hate, however - and snobbery - may indeed need a DSM number when it gets this ugly.
October 17, 2009
October 16, 2009
Want to help other families? Here's a free and simple way: there are so many books out there, it can be daunting to choose. If you've read a book about eating disorders that helped:
Review it or add it to the list on the F.E.A.S.T. site. http://feast-ed.org/bookreviewsbyparents.html
Another important place to write reviews is on the Amazon.com site. These reviews really do matter to buyers, and are widely distributed.
One quirk of Amazon is that you can't write reviews for a book if you didn't buy it AT Amazon. For that reason I can't review my all-time favorite book for parents: "My Kid Is Back" by June Alexander. I highly recommend this book, and ask you as a favor, if you have bought it there and found it useful, go review it: My Kid is Back.
October 15, 2009
- Lisa Brownstone, the research coordinator for the University of Chicago Eating Disorders Program under Dr. Daniel le Grange, recently contacted me about a study comparing three approaches: family-based treatment, cognitive behavioral treatment, and supportive psychotherapy. This study provides free treatment to adolescents suffering from bulimia. Interested families can reach Lisa at (773-834-5677)."LINK to the NEWS RELEASE. (For more information on clinical trials, visit the F.E.A.S.T. site.)
- The National Eating Disorders Collaboration Youth Survey is looking for young people under 25 years to fill out a survey that "will be used to shape recommendations to the government on how we can best prevent and treat eating disorders in young people. TAKE THE SURVEY.
- The Academy for Eating Disorders is offering a Patient/Carer 2010 Conference Scholarship Program, thanks to a generous donation from AED member Donna Friedman and her husband, Randy. Two scholarships of $1000 each will be awarded to defray the costs of conference fees, travel, and hotel accommodations for the 2010 ICED. For more information please click here.
October 14, 2009
At first I hesitated to comment on "Early response to family-based treatment", out of fear that it would discourage vulnerable families pursuing Maudsley treatment. One thing I've noticed is that it takes a tremendously optimistic environment for parents to do FBT. But: knowledge is power.
We already know that early response to treatment indicates with some accuracy who will respond to inpatient treatment (goes for AN, BN and BED). In this randomized controlled trial, "Weight gain by Session 4 of FBT predicts remission at post-treatment in adolescents with AN in a clinic
This is an important clue to the strengths and the weaknesses of a family-based approach - at least as manualized and currently practiced. I can imagine many scenarios: that some patients have illness too intractable to respond; that families who are well-suited to this task will come through early; that families unsuited to this show that early; that the method is simply too inflexible or underpowered to cover the full range of families and illness in need, or that this approach is simply wrong for a percentage of families. We could theorize all day, and I'm sure we all will.
I take from this that families who are not making progress after the first month need another alternative. It is also my sense that many families need a LOT more help than they are getting to be successful at home-based re-feeding. I look forward to data on what happens in terms of long-term prognosis for those patients who do not respond early to FBT. Do they go on to worse outcomes regardless? Do they thrive with some other intervention? What IS the alternative?
I'm left with the continuing question of what the active ingredients in FBT really are, and which of them fail these families. I wonder what parts of FBT will then be discontinued: nutrition, family involvement, separating the patient from the illness, symptom focused treatment. If all the alternatives to FBT are in opposition to the principles of FBT then how will we know what works and why? Is this about FBT being the wrong direction or too lightly applied? What if FBT was done in a whole-family way IN the hospital or more intensively (as is done in 5-day intensive programs)?
Yes, my heart hurts at the parent reading this information who has struggled with a home-based approach and now feels defeated in the hardest and bravest thing he or she has ever done. Yet I do not wish for families to continue to struggle fruitlessly. We can't ignore or wish the data away - these are some of the best researchers in the business - but until we know of viable alternatives we do need to continue to ask: if not Maudsley, then what?
October 13, 2009
Anyway, I used to speak - and sometimes dream in - a second language. Just enough to grasp the essential differences between Mandarin and English and to ponder the absurdity of my mother tongue. Chinese makes internal sense. English does NOT. The most common grammar question from my Chinese friends? "But, WHY?"
In Do Non-English Speaking Kids Get Dyslexia? we learn that dyslexia doesn't spare different writing systems, it takes a unique form according to the culture one is born into.
I have long believed that eating disorders are a brain malfunction that presents in different ways depending on the person's history and the culture around them. Notice I don't say I think these things "cause" the illness. I think it changes how it presents. Schizophrenia is similar: still a brain disorder, still real, but whether the person sees little green men or Guan Yin depends on the value system and myths of their environment.
Even the way we think of what "me" means has cultural influences.
Naturally, I bring this back to eating disorders. The fact that our society is in a self-satisfied crusade to criminalize body fat has an impact on those with a predisposition for eating disorders. It makes it harder for us to recognize ED symptoms AS an illness before it is too late. This morality-based campaign clearly confuses and makes recovery that much harder. We won't prevent eating disorders, and it may only reduce the suffering, but I think it is worth challenging the obesity hysteria as one of our time's most damaging myths.
In any language, Fat Talk Free Week is a good thing.
October 12, 2009
A Few Months of Talk Therapy Treats Bulimia
No wonder people are confused. Headlines like this, that take something useful like "Bulimia-specific CBT 'takes around 4 to 5 months'" and turn it into a meaningless and global prescription.
Every month or so some syndicated headline will declare eating disorders "biological" or "inadvertently caused by parents" or "on the rise" and everyone comments on it and then it is lost until the next headline. None of these headlines are accurate (disease is too complex to boil down to a single Eureka headline), and no one is convinced.These tag lines just get used by those who want to believe them or don't want to believe them as a "so there" against the other one. It matters not whether the headline stems from truth or good science or not: it is all blenderized into a tasteless sludge with every other pronouncement.
Anyway, don't stop at the headline here: go on to the abstract and the paper itself.
October 11, 2009
Anxiety and postural sway
Finger length and disordered eating
October 10, 2009
Families who are likely to be having family meals are different from other families in a lot of ways: demographically, culturally, religious. While I do believe family meals were both therapeutic and diagnostic in my daughter's case it does not follow for me that family meals are preventive or a moral judgment. We didn't do family meals routinely before our daughter was ill, and I regret that more because it is a lovely and family-building experience than out of guilt. I do now suggest normalizing and prioritizing family meals for many reasons, mostly because I think we've stomped out what would seem to be normal and many of us need permission to adopt it again.
I like the Ellyn Satter idea that kids deserve adults in their lives who are competent and confident and reliable in providing meals. That structure is, like other parenting responsibilities, very individual to the parties involved. I'm still not great at planning and preparing family meals, and probably won't ever be expert at it. I don't iron well, either, and I am just stupid on my son's Boy Scout merit badge requirements. My kids probably don't need me to be perfect, though, just trying - and I am.
October 9, 2009
October 8, 2009
I want to particularly endorse the following:
"I am relatively unconcerned when I meet an adolescent patient who lacks insight or motivation or who resists treatment. I am very concerned when the parents of an adolescent patient are unwilling, unmotivated, or unable to play an active role in their child’s treatment."
Parents need to be included and assisted, but we also need to Step Up.
October 7, 2009
Adding to the discussion, Psychotherapy Brown Bag (a great read always) has thrown this in about the role of the therapeutic alliance. **
It gives me happy chills that we even HAVE this conversation. I'm a big fan of therapy: think every baby shower should come with coupons for Play Therapy and we should swap out Algebra for Mindfulness 101 and marriage certificates should include the cost of an on- call Marriage Counselor. I think the world would be a better place if we all would engage in therapy at least as often as we get our hair cut and car washed, and some of my best friends are therapists.
But my good feelings about therapy are matched with my concern about BAD therapy. Therapy based on antiquated and damaging ideas. Therapy provided by people who are themselves unwell. Therapy done according to politics or fashion or good intentions uninformed by current research.
For all the good that can come of a person or family coming together in therapy to address problems - and I have personally experienced so much good in a therapist's office - there are potentially tragic risks as well.
Good for those who are really discussing how evidence and empirical knowledge can inform the art of therapy. Shame on those who find even the conversation unacceptable.
**P.S. Adding this: Shrinking the Shrinks
October 6, 2009
Parents play a much larger role in the daily life of students these days, right up until Freshman Orientation. What was normal in June is Helicopter Parenting in October. I think we need to empower ourselves and change that, especially when a loved one has a history of mental illness. That change is going to have to come from us.
October 5, 2009
We know about the "kindling" effect of depression, and the known triggers of bipolar episodes (stress, drugs, lack of sleep).
I wonder if we will come to a time when we look at eating disorders as a vulnerability that, if we avoid activating it during childhood and adolescence and early adulthood, could be avoided altogether. If children at risk were protected from dietary restriction, unrelieved stress, and over-exercise - would it prevent eating disordered minds?
October 4, 2009
It is all about context, of course. Serving wine at an M.S. fundraiser doesn't alarm me, but it would at an AA event. Having a Fun Run to raise awareness around leukemia doesn't strike me as odd, but I'm positively perplexed by the trend toward Walks and especially Runs as recovery awareness. Would we hold a Fast for Anorexia? Compulsive exercise is one of the most common symptoms of an eating disorder, and the whole fitness world could use an ED intervention. Lest we forget, we live in a world where people think it is fighting eating disorders to do competitive eating and body building.
I'm not naming names, but even if it makes money and a good time, and even if it means saying no to a well-meaning big name celebrity - I wish we'd rethink this. Just thought I'd get that off my chest now, in case anyone else is queasy over this as well and need back-up.
May I suggest, as an alternative, group hugs or "Eat Ins" or "Fun Naps" instead?
October 3, 2009
In the constant badminton game between those who would see temperament as all nature or all nurture I find that people often want to put me on one side of the net just because they've placed themselves on the other. In fact, neither I nor others who point to temperament and biology as important in understanding eating disorders are interested in being on one side of the court. Nature and nurture are not opposing sides, nor do they need to be balanced in some way to be "fair."
Some things are primarily genetic, some primarily experiential, and the vast majority involve complex and interacting factors of both. I doubt there are many things we could say are only genetic or only experience.
Parenting matters. I wouldn't do the work I do if it didn't and in fact most of my work is about parents doing and not doing things. People get stuck on the finger-pointing and not the point. Parents need help in learning how to nurture and protect their dear children.
The point of not blaming parents for a child's innate temperament is not to make the parents feel better. The goal is for the parent to understand the child (and him or herself) and to respond in the best way possible. Parenting anxious kids, and parenting when we ourselves have anxious brains, is a topic we all need to discuss.
October 2, 2009
October 5, 2009
National Capitol Area Half-day Conference on Family-based Treatment
Working Together for Recovery: Families and Professionals as Partners in Eating Disorder Treatment
Bethesda, Maryland, US
October 16, 2009
The 5th Wales Conference for Parents and Carers of Eating Disorders Sufferers
07854 239664 email@example.com
October 17, 2009 Fifth Annual
UNC Conference on Eating Disorders
The Friday Center, Chapel Hill, NC, US www.med.unc.edu/cme/events
October 16-17, 2009
Eating Disorders in Children and Adolescents and Young Adults Conference and FBT/Maudsley Training
Stanford, California US
October 22-24, 2009
KONGRESS ESSSTÖRUNGEN 2009
EATING DISORDERS 2009
The 17th International Conference
Alpbach, Tyrol, Austria
October 24, 2009
EDANN collaborative workshop in Canberra
October 29, 2009 (continuing every Thursday for 6 weeks)
"BUILDING HOPE: SKILLS BASED WORKSHOP FOR CARERS OF A PERSON WITH AN EATING DISORDER"
firstname.lastname@example.org or phone 03 9885 6563
Have any events to add? Email F.E.A.S.T.
Or parent support group meetings to add?
October 1, 2009
September 30, 2009
Gene expression patterns associated with PTSD following exposure to the World Trade Center attacks
Inflammation Brings on the Blues
Non-Invasive Test May Help Determine Whether to Switch Antidepressant Therapy
September 28, 2009
September 27, 2009
Jenni Schaefer mentioned F.E.A.S.T. in an interview the other day that parents will enjoy listening to. You can hear Jenni's new song and an update on her life since her first book. My friend, Becky Henry was one of the callers and the interviewer had some great questions.
Jenni's work and first book played a powerful role in my own and my daughter's understanding of this illness. Jenni's new book is a new chapter in that understanding, of what happens AFTER recovery: "Recovered."
And Jenni, thank you for your support and kindness.
"I'm finally happy.... I'm having fun." That's a message that I know means so very much to families currently struggling. We need to know and believe in and keep optimistic about full recovery.
September 25, 2009
Less Butter And Fish Implicated In Increased Teenage Allergies
September 23, 2009
Help Improve Patient Care
By Helping to Change the Diagnostic Criteria for Eating Disorders!One of our most important missions at the Joy Project is to assist those who suffer from eating disorders in getting their voices heard. As some of you may know, the American Psychiatric Association (APA) is currently in the process of reconsidering the diagnostic criteria for eating disorders, which will be published in the Diagnostic and Statistical Manual for Mental Disorders- V in 2012. We believe that a crucial part of this process is consideration of the negative impact that the current criteria may have from the perspective of the patients themselves. If you would like to help bring these issues to the attention of the Eating Disorders Working Group of the APA, you can help us out in two ways. First, we have composed a petition to the APA, outlining the general problems the current diagnostic criteria can pose for patients. You can add your signature and add comments. We've also created a personal experience form letter , in which you have the chance to share any personal experiences you may have had regarding the ways in which a focus on weight or "severity" of your eating disorder may have affected your own personal journey. Then, send your letter directly to the Joy Project, where we will compile them and deliver them to the revision work group at the APA!
September 20, 2009
My journal has pictures and video clips!
September 19, 2009
Give yourself ten quiet moments - I just did - to watch these two videos:
Watch CBS Videos Online
Watch CBS Videos Online
September 18, 2009
September 17, 2009
"Last month we had a wildly successful call in campaign for the SENATE. Now we need to repeat the same strategy for the HOUSE. Action Alert: We need you to call your Representatives today!"
September 16, 2009
It is time to say that. With confidence, calm, and purpose. Without apology.
It is time to hear that. For those parents who are suffering from guilt, shame, and hesitation. For those who might still harbor that bias.
It is time to act on that. By empowering parents to take action - to seek excellent care, to be involved and well-informed.
You didn't cause this, but you can act. We are not perfect, but how you respond to this illness will no doubt teach you more about how strong you can be than about regrets. Children of all ages need their families to be the best they can be during crisis, and this illness is a crisis. We need to celebrate the positive role parents can, and should, take to help heal and protect our children.
Parents make mistakes, and some make grave mistakes. There is much we as parents could do better, and harm we can cause. I'm certainly not making excuses for parents, nor do I believe we don't contribute to our children's self-esteem, body image, and eating - we do. But the mental illness of an eating disorder does not, in itself, say anything about our actions or inaction. Our responsibility is to face any issues in our families that get in the way of recovery, any illnesses we may have that complicate recovery, any attitudes that may confuse our recovering children. This is different than blame, and doesn't imply cause.
Need a shot in the arm? Read the new F.E.A.S.T. position statement published last night, and read quotes from leading voices in the eating disorder world - and add your own:
Parents Do Not Cause Eating Disorders: Families are important allies during treatment
September 14, 2009
In any case, I give myself permission to go back to bed after the morning breakfast/bus/trash/feed dogs routine is over. Then I'll try morning again. It may feel better the second time.
September 8, 2009
Thank you for making this trip and my work possible. Thank you for the support, the time, the advice. For calming my worries and for packing my bag. Thank you for taking off work and taking on the dogs and the house and the homework and meals and getting my car inspected. Don't worry about the "honey-do" list - you've already done it.
I promise not to enjoy the week of maid service and restaurant meals and adult conversation TOO much.
Your best friend
September 7, 2009
I can't blame anyone but myself for this, but I'm a speaker three times this week, throwing a party for 40+, doing a book signing, meeting several people in person who I know well on the phone and on the Internet but have never seen, pulling together a team of a dozen volunteers for the F.E.A.S.T. table, plus two planned meetings and talking with dozens and dozens of new people each day. Be careful what you wish for, my friends.
I'm terrible at packing (matching up shoes with clothing confuses me - is there really a rule about brown and black accessories? why can't I wear flip flops? is this too matchy-matchy?). Travel is filled with details to drop (have I forgotten anything? how do I get there? have I left enough time?) under pressure. I am sooo not smooth on this stuff. I'm a writer, for goodness sake: I spend most days in my pajamas! My commute is downstairs to the coffee maker!
Then there's the conference itself. Although I have developed many friendships and alliances in the ED world there are people who simply don't like me or my message - that's no fun. There are factions and politics and other tomfoolery brewing that one runs into even if I avoid them, and this year some prickly ones. (Mantra: We are all on the same side. We all have the same goals. We are all nice people. May I buy you a drink?)
And here's the thing: I'm shy. It is no longer paralyzing, and I know I no longer come off that way, but I really am. What gets me through this, and public speaking, and all this advocacy work, is that I feel so strongly about what I'm doing. I really do. I don't know that I could work up the courage to gather volunteers and give speeches and walk up to strangers the way I do now if not for the feeling that it is important and that people like my daughter benefit from the work F.E.A.S.T. is doing. Dreaming of some day helping change things is what got me through some dark, dark days of my daughter's illness.
My daughter taught me something recently. I'm notorious for looking ridiculous in photographs - awkward, tortured, blinkingly ill at ease - it is a family joke. She noted that I do fine if either of my children are taking the picture, probably because I'm looking at THEM and not the camera. I'm a sucker for my kids. It is the thought of the two of them that steadies me to pack up and do this stuff, despite the butterflies.
Neither of them will join me in painting the fence, I must note, but they helped me anyway today, just by motivating me - I love you guys!
September 6, 2009
OK, maybe from YOUR mother, but not mine!
Seriously - this is interesting. Perhaps an evolutionary adaptation** to cruel times set some female genes up to respond to adversity by getting OUT of town (or savannah) as fast as they can and without packing a lunch.
In today's world those genes would present themselves as a "I'm skipping breakfast to go to the gym."
**For anyone I haven't yet brow-beaten to read Shan Guisinger's ground-breaking work on evolutionary adaptation to starvation, do so now.
September 5, 2009
September 1, 2009
"anorexia patients' five-fold increase in deaths due to gastrointestinal diseases may have been due, at least in part, to the indirect effects of alcohol abuse since 4 out of 6 deaths in this category were from liver cirrhosis. Moreover, other researchers have found that a number of patients with anorexia do not have alcohol problems during the first part of their illness, yet develop them later. Thus, anorexia patients should be carefully monitored for signs that they may be developing alcohol dependence."
Parents are understandably eager to return to 'normal' after initial recovery, we are often told to back off, and the patients almost always want us to let them move on and move out. But it is clear to me that eating disorder patients, even after recovery, deserve a higher level of vigilance on the part of loved ones. Not suspicion or distrust or babying: loving vigilance. Checking in, ongoing medical monitoring, open communication.
August 31, 2009
** A grateful shout out to Mamame for delivering this gem!
August 30, 2009
Mom charged with neglect in adult daughter's death
Mom: My Daughter was Bullied into Anorexia
Both stories are tragically in need of the word "and."
People can be abused AND have a mental illness. People can be bullied AND have a mental illness. AND is not the same as SO. Let's not confuse AND with SO, because it often leads to the correlary: you have an eating disorder SO you have been abused or bullied or otherwise victimized. Let's care about bullying and abuse AND eating disorders without seeing the relationship as cause and effect.
I would argue that being abused or neglected or bullied make one's mental illness that much more tragic. The mentally ill are, in fact, often victimized by those around them. Parents who themselves are ill cannot serve well as guardians and nurturers of children, and mentally ill children desperately need safety and loving homes. Bullies pick on those most vulnerable to their cruelty: and any child who is different is more likely to be targeted.
August 29, 2009
August 28, 2009
NOW WHY YOU CAN DO THE MAUDSLEY APPROACH
1. Your child is suffering from a serious, life threatening illness and although very willful while under the influence of it needs you to take over where he/she is unable to make effective decisions.
2. Although ED will hate the steps that you take to fight it and protect your child, he/she will thank you in the in long run for saving their life.
3. Maudsley is A LOT more then trying to make someone eat. Besides, we live and learn from past trials and errors.
4. You know that the ED will impede him from "wanting" to eat. He does not have to want to eat, he just needs to eat. Effectiveness is doing what is needed in a situation, it does not entail liking, wanting, etc.
5. If your current treatment providers are not on board and supporting use of evidence based and effective treatment then it's time to shop for new providers. You and your child deserve the best treatment possible. Research demonstrates that Maudsley is the treatment of choice for individuals with eating disorders under the age of 18.
6. Any eating disorder is bad enough. Research demonstrates the best prognosis is associated with early intervention, shorter duration of illness, comprehensive treatment, continuum of care and full weight and nutritional restoration.
7. There is no such thing as too serious. If inpatient/residential treatment is needed for medical stabilization prior to outpatient treatment it is still essential for parental/family involvement in treatment. A comprehensive plan is essential for continuum of care following discharge.
8. No one told me about it. This is very unfortunate but now you know so please go to www.aroundthedinnertable.org to get more information, resources and support in conjunction with an individualized and comprehensive treatment team. You and your child deserve the best treatment possible!
August 27, 2009
After a lifetime of wrestling and scrunching and smoothing my snarling tresses I finally learned the truth. It was obvious once I looked in the mirror after she explained it.
"It does this." She said, the first hair professional to ever simply explain.
I'm adjusting to this new, old reality. I'll probably still try to make it do that once in a while, applying products and hot metals to the effort. But there is something to knowing that it just doesn't do that. And this is okay.
** And yes, L, this is an allegory, an allusion, an analogy, and a true story.