November 30, 2011

Success chasing: "He's a well-known expert. He's been treating eating disorders for years!"

Fascinating and chilling, both:

Brain Imaging, Behavior Research Reveals Physicians Learn More by Paying Attention to Failure

The power of confirmation bias and "success chasing" is an important dynamic in trying to change the way a field operates - as I believe the ED field needs to do. When I hear "it works well for my patients" my hair stands on end. That may indeed be true, actually, but that person's confidence in his or her practice isn't a good judge.

I have seen some people be presented with evidence, training, experience, and a shift in the field but still believe that all of it can be explained away or has little relevance to their own work. They simply believe what they believe and know that because they have good intentions and see successful patients that their judgment is sound.

Yet change, even with the very best evidence, is still difficult when we consider that: physicians still struggle to do the most basic of life-saving hygeine: washing their hands.




The internet has joined sunlight as the best disinfectant!

One stellar example of how the Internet is protecting the public by letting people share and publish information:

The schoolboy blogger who took on a US clinic

Thank you, Erica!

Making noise to say "treatment at ALL ages!"

Early intervention is important, but that doesn't mean it always happens or that those who are still ill as adults no longer need or deserve treatment. In fact: chronic patients need and deserve care as urgently and as professionally skilled as anyone.

June Alexander is a shining example of a patient once given up on who has gone on to recovery and to fight for others - young and old. She is "making some noise" right now for a specific patient who is falling through the cracks of the system in Sydney just as countless others are around the world. This patient deserves care and needs it urgently - and she represents a tragic lack of services that adds to the burden of an illness that is already so very difficult.

These tragedies are invisible to the public, or misunderstood to be a matter of personal weakness or will. Those of us in the eating disorder advocacy world see these people, know their families, see the struggle of their treatment providers - they are not invisible to us and we do not feel hopeless.

Let's join June in making noise, for this patient worthy of our attention and for ALL those suffering from eating disorders without appropriate care!

November 29, 2011

The difference

Parents, we are the difference.

The difference between what insurance will pay and what needs to be done.

Between what is 'usually done' and what our loved one needs.

Between 'out of danger' and restored.

Between a diagnostic threshold and a healthy real life.

Between a diagnosis and a unique beloved person.

Between what is convenient and what is needed.

Between what others think we can do and what we CAN do.

Between fewer symptoms and NO symptoms.

Between discharged and the real work of recovery.

Between legal responsibility and moral responsibility.

Between 'as much as we can do' and 'here's what we're going to do.'

Between services available and unconditional love.

Between averages and actual human beings.

Who else but parents will persevere through illness, through patient resistance, through a series of treatment providers, through financial barriers, through bureaucratic failures, through setbacks, through society's lack of information, through unhelpful friends and relatives, through marital discord, through sibling distress, through career dashing and the loss of dreams, and through personal exhaustion? Who will be the only ones to have that singular goal of a loved one's not only getting better but moving on?

What role DOES attachment play in eating disorders?

Those who would say that attachment problems play a significant role in causing an eating disorder to happen take a great risk. The potential harm of having parents doubt their most basic relationship with a child, and that even unknown and inadvertent "issues" could trigger an often fatal mental disorder - is a serious thing to take on. At the moment when a parent is most vulnerable and most in need of calm confidence and courage there is enormous import: to every chance comment on the Internet, book picked up at the library, and especially a professional consultation. These messages can save or lose a life if they change the direction of treatment.

So, what is the evidence behind the idea that attachment problems "contribute to the development" of an eating disorder? (this is very very very different than whether families with a current eating disorder patient suffer from attachment problems - as it is one of the symptoms of the disorder for the patient and one of the most disorienting illnesses for a family to face and find care)

Some people took up the challenge of one leading advocate of the attachment theory by taking that advocate's list of supporting literature under an intellectual magnifying glass:
Attachment research and eating disorders: a review of the literature. O'Shaughnessy R, Dallos R.
Child and Adolescent Mental Health Service at Alder Hey Children's Hospital, Liverpool, UK.

Opinion based - discussion of literature only

Attachment disruption in anorexia nervosa and bulimia nervosa: A review of theory and empirical research   Richard O'Kearney Article first published online: 6 DEC 1998 – International Journal ofEating Disorders
Opinion based and "few inferences about the role of attachment processes in the etiology and maintenance of eating disorders can be drawn"

Clin Child Psychol Psychiatry. 2008 Apr;13(2):305-22. A qualitative exploration of relationship and attachment themes in families with an eating disorder. Dallos R, Denford S. Department of Clinical Psychology, University of Plymouth,
A study of Four families of ED patients shows "a set of common themes across the families: False or Fragile Reality, Troubled Relationships, Arguments and Triangulation, Lack of Comfort, and Negative Relationships with Food." Of course it does, there is a loved one in the family with an ED, that means there is a a very worried family trying to care for and hopefully refeed an eating disordered person. An extremely difficult task...you should try it sometime so you understand what you are talking about.

Relationship between parental attachment and eating disorders in an inpatient and a college sample.
Kenny, Maureen E.; Hart, Kathleen Journal of Counseling Psychology, Vol 39(4), Oct 1992, 521-526. doi:
Inconclusive study - this is a case of the chicken or the egg. If you had a loved one refusing to eat, you would be worried and watching someone you care for fading away before your eyes not knowing how to help them is torture. Of course there is angst, of course there is discord. Asking mentally ill ED patients whether they have good relationships with their frantically worried families is not an effective study.

Attachment research in eating disorders Dr. Anne Ward1,*, Rosalind Ramsay2, Janet Treasure3
Article first published online: 16 DEC 2010 DOI: 10.1348/000711200160282 – 2000 The British Psychological Society
This is a review of literature - "Insecure attachment is common in eating disordered populations" This quote doesn't mean anything considering they are talking about ED patients i.e. those who are mentally ill and usually psychotic in their behaviour as a result of malnutrition. These patient behaviour/thought processes/ and beliefs are know to resolve once full nutrition and ideal weight has been restored for some time.
Lest you think that critique of attachment theory and eating disorders is some sort of parent defensiveness, I can say that a lot of professionals are as well - and former patients. Here is just one eating disorder professional speaking up with the kind of concern and clarity that I'm seeing more and more of in the field. 

The reason this topic causes such frustration is that so many parents have had to fight for their children hampered by clinical professionals who thought of them as inherently pathological, broken people in need of "healing" - instead of reasonably confused and frightened loved ones in need of information, good science, and excellent clinical consultation. When you nearly go under while saving your child from drowning you probably feel pretty passionately about water safety from that day on!

November 28, 2011

Environment and genetics: what kind of dance is it?

There was a terrific lecture by Cindy Bulik in Stockholm earlier this month. Comprehensive, up to date, and ground-breaking. You missed it? So did I. Oh, dear. But what's this? It's available online, in full, for free, right now:

Hip Hop or Viennese Waltz? The Complex Dance of Genes and Environment in Eating Disorders: Cynthia M. Bulik, University of North Carolina at Chapel Hill. November 15 15h00 . Location: Nobel Forum, Karolinska Institutet, Solna.

 

THANK YOU, Dr. Bulik, Karolinska, and YouTube!!!

Patient and family information for cancer treatment - Washington DC

My friend, Susan McCorkindale, lost her husband to cancer earlier this year. She works now to help other families facing a cancer diagnosis.

"Please help me spread the word regarding a free symposium Lombardi Comprehensive Cancer Center in Washington DC is hosting next week. The dates are December 1-3, and the most valuable day of the symposium -- to cancer patients, care givers, and family members -- is Saturday, December 3rd from 8am-1pm. The topic that day is Navigating Cancer Care: What Every Patient Should Know."


So many families come to advocacy from personal experience - as Susan and I both have. Nothing spotlights the isolation and desperate need for good information like being socked with a life-threatening diagnosis. I wish neither of us had to come to that, and yet I know both of us feel a responsibility to give back and reach back to others - we KNOW how important good clinicians and good science are.

November 26, 2011

children smoking

I struggle struggle struggle to explain why I worry about "prevention" work in eating disorders. I shock and upset people with this, as if I'm defending poor body image and weight stigma and bullying. I hit upon an analogy that MAY help this morning.

Smoking.

There is no doubt in anyone's mind, is there, that smoking isn't a great move. I am sure that no one thinks kids should start smoking, and it is obvious that smoking can and often does lead to lung cancer. Reducing smoking in the population is an important public health prevention for lung cancer.

But. Does that mean that someone with lung cancer smoked? No. Does it mean that they just need to stop smoking to treat the cancer? Does it follow that the only reason to stop smoking is to prevent lung cancer?

These latter are the mistakes I believe we are making in eating disorder language when we concentrate on preventing body image distress and disordered eating as a way to prevent eating disorders.

I would argue that the fuzziness of the distinction between unhealthy ideas and behaviors vs. mental illness would be analogous to equating smoking with lung cancer. Sure, they're related for the majority of people. No question: we need to keep trying to end smoking and we need to keep kids from starting. But equating lung cancer with smoking isn't going to work as a treatment, and isn't going to help those who have cancer from radon exposure or genetic predisposition or other triggers. When someone has lung cancer already, it doesn't matter very much what caused it. Once someone has an eating disorder although their treatment will often need to include work on disordered eating and body image those can not be the whole picture - or even most of the picture.

When someone is smoking, their health and quality of life are usually compromised even if they don't get lung cancer. Same with poor body image and disordered eating behaviors.

I'm not convinced that public health efforts to "prevent" eating disorders are effective or effective enough to matter. At this point it strikes me that there are far more direct early interventions, such as pediatricians (and parents) tracking weight concern, history of anxiety and OCD, and flagging for any failure to maintain normal growth. I wonder how many eating disorders would be caught early or even prevented if track coaches refused to schedule meets and travel that preclude eating, or if the system of weighing for wrestling was entirely revamped. What if we banned BMI report cards and lining kids up to be weighed at school in front of their peers? I'd like to see a study on rates of eating disorders being triggered and maintained in schools with anti-obesity campaigns, or in schools where "health" teachers show "Super Size Me." What if parents were coached to use safety seats, bike helmets, and family meals? What if we even just added to every childhood obesity message an equal concern for undernourishment and unhealthy dieting behaviors?

What if we're treating body image and disordered eating in the population as the greatest risk factor when it is really not, or it is really something so immutable it isn't a reasonable target? What if work to change those factors was more like trying to prevent depression by banning death or talk of death? Uh-oh, that's a whole different analogy.

November 25, 2011

parallel tensions

The term "evidence-based" seems to really freak people out. This reflexive distaste has always annoyed me, and it also makes me sad. I think this distaste has far more to do with scientific illiteracy than anything.

Evidence-based doesn't mean "this is the only thing and you must only do this." It just means "this can be distinguished from myth and from that which has not yet been studied." Evidence based doesn't mean life's tools can and should be reduced to their elements, or that Big Brother is overriding your good judgment; it is a TOOL to improve your judgment.

This essay on a controversial exchange over psychoanalysis, and characterizing the NIMH as mafioso, offers a wonderful tonic to the endless polemic. Another reminder of how being reasonable and balanced can appear threatening and extreme to those who don't understand what is being discussed. And why defensiveness says more about the defender than the ideas that seem so threatening.

November 23, 2011

other things you can buy for $40 million

We're all bored with the usual, and often misleading, "lit up" images of the brain.

This one is fun, though, and accompanies an important direction in research, and cheap at the price! Other things $40 million will buy you:

Low emission luxury sailboat
Black athletes
Enough chickens to prop up the economy
A mansion in Bel Air


Now hear this


Hello. Did you find my blog today because you hadn't really paid all that much attention to the growing parent movement to change eating disorder treatment but you're alarmed by the anger and emotion you are seeing?

Welcome.

I don't control the thoughts and actions, obviously, of other parents and activists. That'd be fun, but it isn't possible. I can speak only for myself, but I am familiar with the  groundswell of anger - and intellect - around these topics.

What seems like an organized mob, and like irrational and extreme anger, is the sound of lots of individuals who have always been there but were ignored and pathologized and patronized for a long time. The Internet offers people not only a voice but an address to send it to - and the whole thing goes on in public. This is new. It is uncomfortable. It is important. It is uncontrollable. It isn't going away.

We're talking about parents who have seen their precious children's lives put in harm's way from damaging practices - and feel a responsibility to protect others from that danger. We're talking about a growing number of clinicians who are standing up to fellow clinicians and to professional criticism. And recently, more and more patients are recovering and asking difficult questions about why their care was not informed by real science and did not usefully include their families. It isn't an organized movement, and it isn't a phase - it's the ugly rough leading edge of paradigm change.

So, now that we have your attention...

We must all fight together against incivility, too. It takes the focus off the ideas and allows those who share your values to be dismissed.  I find it hard to see the ideas that I hold dear and fight for expressed unkindly and in ways let critics off the hook. I want the IDEAS to be taken seriously. I want to see parents and other like-minded activists stand up for ideas and good science in a way that can't be dismissed as purely emotional or about each of us as individuals. The IDEAS don't have an owner and deserve to be heard. Ideas can and must be discussed among equals - and people held accountable for the ideas they stand for.

There are genuine and important intellectual discussions that need to happen. I've worked for years to get to have those conversations. I had no power and no audience and so I've had to patiently listen, slowly gain confidence, show up, build a track record, be generous, make alliances, and earn the trust of others - when really, sometimes, I'd rather have thrown an enormous angry fit and I wouldn't have been all wrong to do so. Interestingly, I have been dismissed as angry and emotional and self-interested no matter how gently and cogently I expressed myself. Avoiding disagreement, I'm afraid, isn't an option - it is long overdue. I'm not sure there is a way to disagree without emotion.

And that may be why you didn't know about this before, and are shocked by the pain some of these ideas cause. The critiques aren't new and it wasn't the urgency of change. The spillover of fury and frustration - JUSTIFIED and REAL - is what brought you here today. I wish the concerns and frustrations of parents were heard without that anger. I wish the anger was understood and JOINED because there are reasons for it. The parent autism world has been through this, so has the schizophrenia community. Heck, every social movement has: first they dismiss you, then they laugh at you, then they listen. I'd have to add somewhere in there: then they are scared of your emotion and you and think YOU are the problem.

We must not stop being angry. It is justified, rational, well-grounded, and long-standing. Those who misunderstand it, pathologize it, patronize it, and dismiss it are wrong to do so. They've not seen it growing, they don't understand it intellectually or emotionally. But "they" feel the same way "we" do: caring, indignant at being questioned, hurt at being misunderstood. These are people, individuals who care as much as anyone about these issues. It is frightening to be criticized in public - even in the kindest of terms. It is emotionally difficult to have your life's work disparaged. It doesn't feel like someone is handing you important information, it feels like being attacked for no reason.

It is essential - and courageous - to treat everyone - ESPECIALLY those with whom we disagree - with dignity and respect. Not because they are right, and not as a tactic, but because it is only by treating the other person as an equal that we have a chance of genuine change. They cannot treat us as equals or openly discuss ideas with us if they feel embattled and in a corner.

We must keep speaking up. We must be clear, and we must listen, too.

Even if they don't hear us.

November 22, 2011

Attachment to theories

I'm hearing dismay and concern from a number of families about the attachment theories around eating disorders. I share that concern. Vulnerable parents who encounter those theories will find them plausible, as of course attachment is an important part of human development and integral to the parent role. We all care deeply about our relationships with our loved ones and the idea of failing at that task feeds directly into good parents' fears. When a serious mental illness puts a spotlight on possible parent pathology this is a leap that risks harm. When those attachment issues can be anything from the otherwise benign to complete family disruption then the attachment concept is stretched beyond credibility.

An eating disorder diagnosis tells us nothing, really, about the person's family or history, except that they are now ill and in urgent need of family support and clinical care based on current science, not unfounded theories.

Unfortunately, mental illness can cause attachment issues that seem to be environmental when they are really temporary symptoms. These symptoms are very easy to interpret as attachment related: social disconnection, disconnect with the body, rejection of family assistance, a conviction that there is meaning behind these thoughts and behaviors, and especially a disconnect with those who know them best: because the illness isolates and distorts reality.

I'm not sure whether my comments on a recent article at Psychology Today will be published, as the atmosphere has grown heated as families express their distress, but here is what I said:

I spend a lot of time with experts and researchers in the field of eating disorders. The experts are quite clear in saying that we really don't know what causes eating disorders. We do have a better grasp on what does NOT, as despite earnest efforts to substantiate older theories no real evidence has ever been validated. 
It is SO important that we take care in publishing theories on the cause of eating disorders. There is a tragic history of unsupported theories gaining currency and causing great harm. Attachment theories around autism and schizophrenia come to mind here, as these completely false ideas hurt those patients terribly by disabling their parents from action and support. 
Attachment is an important aspect of life for all human beings. Its role in causing mental illness is less clear. What we do know is that when a patient's parents are told that attachment problems are at the root of causing or maintaining this terribly dangerous illness that the family is at enormous risk of responding poorly. Imagine if a family facing caregiving with childhood cancer were told the same? 
The burden of proof on these theories is a heavy responsibility. As well-meaning as it may be, the risk of harm is enormous. 
Laura Collins
Executive Director
F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders)

antibiotics and residential care for eating disorders

I'm not a fan of the dependence on residential care for eating disorders, especially for children, adolescents, and young adults. I make no secret of this and make few friends over it, either.

There are many reasons for my lack of enthusiasm (and it is that, not a total rejection or wish to make it unavailable). Let me just focus on one, through an analogy that may work for many: residential care is like a super high dose antibiotic that is withheld until the infection is quite severe and then withdrawn before the infection is fully resolved.

Of course we want to make sure people have access to emergency antibiotic care if they have been poorly managed up to that time or have a particularly dangerous strain of infection. But to base a treatment system on that sort of emergency intervention leads to patients not getting the care they need early on when the prognosis is better. If we withdraw the sometimes excellent intervention before it is completed - and it is simply NOT POSSIBLE to stay in residential long enough to do that - and switch to a lower-dose treatment administered by less-trained and often completely cowed people - is there any question why the resistance is greater and patients repeatedly have to start over?

We have created a system - accidentally - where the appropriate dose and length of treatment are rarely available. We are creating treatment resistance, weakening long-term resources, and operating in crisis management as a field. No one meant for this to happen, of course, but it is being held in place by many factors - not least that people who understand the danger of eating disorders fear the withdrawal of those late-stage interventions and feel angry and betrayed by those who question the system.

I do not like being an irritant and hurting people with these questions. I would not do so if I didn't truly believe the system is causing preventable harm - and if I did not have example after example of people who have made the transition in their thinking on this topic. People are starting to speak up about misleading statistics, lack of accountability, and false advertising on the part of some residential care providers. Those people who are speaking up are brave, not traitors, and they care as much about the patients as anyone.

November 21, 2011

Weight restoration, complete restoration: not optional!

Parents, if you are not hearing this from your treatment providers, get a second opinion:

WEIGHT NORMALIZATION TREATS COGNITIVE, MOOD, DYSMORPHIA, ANOSOGNOSIA, SOCIAL, AND BEHAVIORAL SYMPTOMS OF THE MENTAL ILLNESSES WE CALL EATING DISORDERS.

Does it cure eating disorder predisposition? No.

Is it a "any more is better" situation?" NO. (until you find the individual's sweet spot, it can be WORSE than being lower)

Does it work the same way for everyone? No.

Does this include bulimia and binge eating? Bulimia, yes, any weight suppression stops the clock. BED, we don't know.

Can you normalize by putting people in a hospital? No, unless they're going to live there indefinitely, and then you are causing a whole new set of problems.

Can hospitalization be necessary. Yes: for emergencies. Best idea: avoid emergencies with early intervention and have everyone on the same page on the non-negotiability of restoration: providers and family.

Can patients do this of their own volition? Rarely. And it's pretty unfair to ask them to. They need our support.

Cure pre-existing co-morbid conditions? No.

Can you use charts to figure out what normalization is? No.

Is there a single number we can find and focus on? No. Sorry.

Is it absolutely necessary to individualize the process of finding normalization? YES.

Fix society's obsession with weight loss? No.

Can families pursue this without specialized eating disorder professionals? Some do. We did at first, but it was harrowing. The risks are enormous, including making an already very dangerous illness worse, a much harder recovery, burnout, losing custody of your child, and alienating people in your life who could be supporting you. Professionals should be there to assist you, and there are incredibly skilled and effective clinicians out there. Find them. Listen to them. If your health system or insurance don't pay for it, you are in the majority.

Do the thoughts magically disappear at the moment of weight normalization? Sometimes, but don't expect it.

Does it still take months or more to repair the body and brain? Yes. Especially in a developing child or adolescent.

Do we still need psychotherapy? Usually.

Will the patient's insight after weight normalization last? Not unless it is maintained.

Do patients like weight restoration? Um. No.

Can patient choose their normalization level?  See above.

Do mental symptoms get worse right before normalization? YES.

Does it matter how long someone has been marinating in malnourishment? Yes.

Can you recover without it? No. Period.

Is the science depressing?

I was very interested to hear from one of my friends in the audience at The Map Ahead that the Kaye presentation, "How parents know what is already mapped and what remains uncharted?" was upsetting and depressing. She left it deflated, and without hope. On the other hand I and others found it inspiring and we cheered. Why the difference? Here's my response:



I've been thinking a lot about what you shared about how depressing you found Walt's talk. It helped me a lot to hear that response, and helps me understand how these messages – the same messages – can be encouraging or demoralizing depending on where you stand.

The message that "we know so little" was encouraging to me, and empowering to many of us, and I want to try to explain that.

It is important for parents to know:
  • There is a lot to learn, and even the professionals are learning.
  • Do your homework, as the solutions you are being given may not be based on solid evidence.
  • Add your own parental instincts into the mix, too, as you have important things to contribute.
  • Keep doing your homework because there is no magic pill: your family needs to engage and remain engaged to find the best path now and then in the continuing stages.
  • Understand that this is a new field and that you will need to take responsibility for the decisions you make – you can not simply turn the thinking over to others.
  • Collaborate WITH the treatment providers and do not expect them to provide all the answers.
  • In your zeal to get help, don't grow so overconfident that you harden into a stance you can't change: the experts are still struggling to understand Eds and so will you.
  • Have sympathy for those who are trying to research and understand this illness – they are up against a lot.
  • Yes, you were right, you may indeed have been given poor advice and care, but don't get mad, get busy.
  • GET INVOLVED with advocacy so we CAN get the data and the public awareness up to speed, as has been done by other movements in the past: so other families later on need not suffer as much.
It is depressing that science hasn't found all the answers and that we are just starting to reveal important clues. But it is also true, and necessary to know. There is a demoralization that comes of being given false confidence and foundless "hope" without actual data or actionable assistance. I think parents would rather see "the man behind the curtain" so they can get to work on positive change. Eating disorders ARE a very serious illness and parents need to know and ACT. Good parents will ALWAYS have hope, but they also need alarm and action.

I don't know that I was ever as frightened and angry as when I realized that the 5-6 eating disorder experts that we consulted when our daughter was first ill – all of them quite confident and "hopeful" about their approach – really didn't know very much about anorexia. It would have helped if there was anyone out there to help me understand WHY these people were so confident and yet, with all due respect, wrong. It would have helped me have the confidence to keep searching for appropriate care – because at the time I was sure I must be wrong, because how could anyone keep treating her if they weren't operating under well-understood and well-grounded understanding of the illness? I benefited from knowing that it was MY job to figure that out, and that my instincts telling me something was wrong with those providers were indeed those of a reasonable mother, not a bad one.

SO, dear readers, I'm curious. How does the message that science is still very puzzled by eating disorders and that most treatment is based on little data, and that the illness is still VERY difficult to treat strike YOU? Deflated, or empowered? Frightened, or ready to rumble? Angry or enlightened?

November 20, 2011

We need this

Great ideas have their time, and it is often technology that makes ideas bubble to the surface for many people at the same time: many of us are talking about registries and other ways of crowdsourcing the need to gather data and gather people around to make change. Here's one:

Social Medicine

online activism is changing things

I only found out about this petition after the fact, but it sounds as if it was successful:

Tell NEDA to Stop Working With the STOP Alliance

The pharmaceutical connection is fascinating and a lesson to all of us.

The traditional press was a safeguard for the public: giving us a relatively unbiased view into issues of public interest. These days, the public speaks up directly.

November 19, 2011

Getting a broader message to the public about ALL eating disorder patients, including young men!

My friend, Matt, does a terrific TV interview that I believe will dispel some myths, and reminds everyone to stop treating male patients as an afterthought.

Just because the ratio of patients is lower doesn't meant the ILLNESS is less serious for men!!



(and, like most things in the ED world, false assumptions have led to poor statistics - we now know that it is not 1 in 10, it is at least 1 in 5 - and that poor diagnosis and a lack of treatment that welcomes males is an enormous problem)

November 18, 2011

I guess I think this post is about me, bout me, bout me....

OK, so I don't go in for much in the self-promotion vein. It feels icky, and immodest, and tacky.

But on the other hand, I do what I do to encourage others to do it, too, and to speak up for others who have neither the time nor the brain space to do it now.

So, I'm just going to ask once. Or maybe twice. Probably no more than three times: help me out by nominating me as a Health Activist at WEGO Health under the category "Advocating for Another."  It would bring eyes to our cause, and help Google find F.E.A.S.T.  and the eating disorder parent community network (which is, you should know, the main reason for this blog and most of my online activity).

You know you want to. Well, you know I want you to want to!

P.S. Thank you - I've been nominated now, and will post when it is voting time. I really, really appreciate it and feel all embarrassed (but tickled) - Thank you!!

Outstanding mothering

Sometimes a mom expresses the job of good parenting in breathtaking clarity, like this:

Coming to terms with my daughter's genetically programmed body size

November 17, 2011

how to get along

So, I've been thinking a lot about conflict lately. I've learned so much, and I want to share.

TIPS FOR BEING LOVED:

Do not hold an opinion. No one likes that. Unless it is theirs. But if you do agree with someone, you'll alienate others.

Do not mean anything you say. People will call you angry and question your motives because they don't believe the same thing and the degree to which you hold that opinion will prove to them that it is your emotion that is the problem.

Do not be friends. With anyone. Leads to heartache and really, who needs them? If you are friends then anything they say or have ever said will be yours to explain or repudiate - very messy. Don't bother.

Choose your enemies carefully. They will start out as your friends, of course, and you will share most values and beliefs in common. You will then both silently freeze in a cold war of morality far worse than what could happen with a stranger.

Anyone who agrees with you on anything is now your friend. Sorry. Even if you don't want others to see you as friends, they will. Even if they don't want to see their name confused with yours, it will. Unless you rent a sandwich board and write a book gossiping about their sins you will be expected to believe everything they believe and defend everything they've done.

If anyone anywhere does anything wrong, and you have allowed that person to continue to live, it's your responsibility. But only if that person was defending your side of an issue. If the ill-behaved person was on the other side they don't have to account for them because they know that that was a single person's actions that ought not reflect on everyone else.

Use language badly. Employ fuzzy terms that mean little or are code words for other things that only your set understand or care about. Don't be caught in clear language. Do not ask others to clarify their language: you may find out you aren't really disagreeing!

Do not let your individual ideas out. They will have to stand naked on the rocks - no one will let them huddle together or support one another. Each will be marched out alone and made to stand in the wind and they rarely survive to achieve actual communication.

Be a victim. It works better. Make sure you have a clear and unassailable grievance to nurse and make sure it is more harrowing than anyone else's. Keep that handy in all conversations in case any idea or warmth threatens your position.

Don't build alliances on commonalities. That's foolish. Circle the wagons. It's far easier to identify common enemies than friends.

Be selfish. Everyone around you has tried being generous and been burned, and learned. Talk about your project, your book, your accomplishments, your fundraising, your pet peeves. If you mention others or help them out, make sure to make it about you.

Have different rules for your friends than for strangers and enemies.

Only have one issue. You can't manage more. If pressing your particular Pyrrhic rightness RIGHT NOW hurts others and really ends up hurting your own, well, whatever. You were right.

Gossip. It works. It's often the only way to find anything out. Give a tidbit, get a tidbit. But keep to things you've heard 3rd hand, because you don't have to stand behind it - plus those are way more interesting. Only fools actually tell people directly what they think - because you have to hear the disarmed and honest response about YOU.

Follow the money. You'll know where it is because others are in the vicinity. No one will think they are following the money, so play along. These days there's very little money, so the corollary is: run from the lack of money. Again, follow the crowd - they know where it isn't, too.

Let nothing anger you BUT anger. Love everyone, be "friends" with everyone, strew flowers and unicorns, don't upset anyone, don't challenge anyone, don't ask real questions, DO NOT GET ANGRY. Allowed emotions: hope. But make sure the hope is not based on nothing real or accountable - that makes people angry.

If you do get mad, make sure to personalize something that wasn't about you. That way the other person can be angry at you for getting angry and we can keep the whole circle of misunderstanding thriving.

Do not get close enough to really listen. It's good to keep a distance. Use phrases like "nothing works for everyone" and "there are no bad ideas" and make up words with lots and lots of hyphens and throw in "multifactorial" to avoid any real discussion.

Do NOT have a sense of humor. It requires flexibility and confidence, which are in recession.

None of your opinions get to change. You are not allowed to learn, to develop, to listen. Don't bother changing, because no one will hear you. It's not about change it is about WINNING.

Do not talk. You may lecture. You may do so to an empty room because people have changed the channel, but still. Talking is meant to be heard and responded to by equals. Letting others be your equal is scary.

No one's listening until you are shouting. Then they ask "why are you shouting?" and that's when you get your moment to be heard. Incorrectly.

Mistake people for their ideas. Make sure people's ideas are "good" or "bad" and don't allow for anything nuanced or even interesting.

Being loved is overrated.

November 16, 2011

Katie's take

Another blogger details the F.E.A.S.T. conference, at Giant Fossilized Armadillo, in which somewhat amusing and embarrassing details come to light that prove just how funny she is, and how I really should be put to bed nightly at nine.

November 15, 2011

The Map Ahead

The Map Ahead symposium in Alexandria earlier this month was a RESOUNDING SUCCESS.

We brought together 139 very motivated, very focused, and SMART people together for two days, over 95 people tuned in online, we heard over 25 people on a formal basis and dozens and dozens more in questions and in participation in the events. We had four sit-down meals, four lively snack breaks, two group dinners on the town in Alexandria, one fantastic Learning Room filled with information, and even an impromptu silkscreening shop.

We heard from a Who's Who of thinkers in the eating disorder and mental health field on topics of great interest to the parent community, and we got it all on film to continue to share with our members.

We had volunteers from all over the world who had not ever met come together to creatively, generously, and often invisibly make all the complex parts of such an event work, and work well.

We had the support of a wonderful and genuinely encouraging hotel staff, families who weren't on site but sent supplies and advice and donations. We each had the support of our OWN families to be there and turn over home responsibilities to others while we were gone.

We did this without sponsors. This is important. All of our participants including speakers' registration and expenses were paid for by someone - either they paid or an individual made a specific donation to cover them. We did this with the goal of breaking even - not fundraising - and not using membership donations. We kept the fees at the rate we knew would simply pay for the expenses of putting on the event. Having no marketing or advertising was important to us as an environment for the parenting community to come together and listen and speak up.

As the surveys come back from participants the response was really positive. All but ONE person says he or she wants to attend next year. (We'll work on that person.)

Were there problems? Yes, of course. We learned a great deal during this process, and know some things to avoid and do better. We also learned that it is impossible to meet the needs of everyone because those needs often conflicted.

We had a few painful issues as well. Conflicts between individuals. Emotional disagreements. Offenses taken, and some behavior apologized for. We learned of an eating disorder death in the community on the eve of the conference, and another during the conference. There were family crises behind the scenes as well. This is a serious, serious illness and it doesn't take time off for a conference.

We learned a lot, and will be processing a lot.

I want to personally thank the F.E.A.S.T. Board and volunteers for my Magic Plate Award. It means so very much to me and is here in my office, shining even on this rainy day. What an honor to have the opportunity to put on that event. More, much more to say later, but life is incredibly busy right now as we sort everything out and continue the networking and the information-gathering and the paperwork and details of such a tremendous effort.

November 12, 2011

Marcella's Musings

As I catch up, I found Marcella's Musings all through the conference!

Another day, another airport

Yes, flying again. I just realized that 90% of the time that I am not barefoot or in tap shoes I am probably in an airport.

And yet, when they make me take my shoes off in security I resent it! We can fit a room's worth of computing power into a cell phone now but we have to show our holey socks to strangers to get on a plane? Really? And what if I forgot socks - do we really want to walk over the same ground as countless unshod strangers?

Didn't put me off my feed, though. Something to love about airports: lots of choices for lunch. Working at home means having to think almost all meals and snacks up in advance. No surprises. No serendipitous Cuban panini. No whimsical fresh pizza. I can have coffee from four countries just on this hallway. I just might!

I really need to get out more.

Parents needed for anorexia nervosa food study!


Parents needed for anorexia nervosa food study!

         Researchers  from Boston University are presently conducting a pilot study to develop a parent questionnaire for studying the nutritional and behavioral aspects of anorexia nervosa.

         If you meet the following requirements, then you may be eligible to participate in our study:

·      Parent or caregiver of a child currently being treated for anorexia nervosa
·      Child is between the ages of 9-30
·      Child resides at home or under in-patient care

The study consists of an interview that takes approximately one hour to complete.
  
If interested in participating, please email bufoodstudy@gmail.com or call us at 617-353-2799

Thank you for considering taking part in this study. We hope that by speaking to families like yours, we can all work together to find the factors that can prevent, ease, and help treat this disorder.

November 11, 2011

November 10, 2011

November 9, 2011

it was the shoes

I'll get time for some serious blogging and commentary on the week's events but if you could see all the things still to unpack and add up....


Thank you, Leslie and Sarah, for the card - and Mark for the shoes....

November 8, 2011

My own magic plate

So, having planned everything at the conference down to the last moment and detail (some of which went awry anyway, but not too painfully) imagine my surprise when they all did something not only without my knowledge but so very sweetly: they gave me a Magic Plate Award complete with a gorgeous and certainly magic Plate.

Which made me cry and look comical.

But very, deeply grateful.

You all are so wonderful!!!!

November 7, 2011

Carry on

Buried in unpacking, unmuddling, accounting, sleep deprivation, and correspondences flying....

But did want to share the single most important tool of conference planning that I learned:


(Thank you, Mary!)

November 5, 2011