December 27, 2011

rare expertise

Family-based Maudsley treatment is still difficult to find, and even with the best of clinical support still a challenge. Smart parents actively seek out information, ideas, and inspiration on how to meet that challenge.

One good resource is the Maudsley Parents "Ask The Expert" page, where you may just find the answer to the very question YOU have been wondering!

December 26, 2011

boys with anorexia

A journalist for a major TV news show in the US is looking for parents of male anorexia patients. I have been interviewed and the producer is familiar with the issues, science, and family concerns about media.

If you are the parent of a male patient with anorexia and willing to talk with the producer by phone for an interview, please email me at laura@feast-ed.org as soon as possible.

Being interviewed isn't for everyone and parents MUST think carefully before doing so, but we also don't make progress in how eating disorders are portrayed BY the media if they aren't exposed to families who are thoughtful and well-informed.

famine: it's a bad thing

My unifying theory of eating, disordered eating, weight dysregulation, and eating disorders: famine defense. I am not alone in this, and the numbers are growing. Some feel it doesn't matter "why" a medical disorder arises and survives, but for me the famine defense helps me organize these disparate issues; I do not struggle to reconcile these many issues and don't feel they pull against one another.

Assuming you are a fan of evolution -- and not all are -- why would humans have such a complex and multi-faceted relationship with feeding ourselves if not for survival of one's genes through famine? If finding food was as simple as reaching up and having it, grazing through a field of adequate nourishment, our hunger drives would be pretty simple. Yet we have terribly complex and multifaceted systems to help us seek, choose, refuse, and feel sated by food. Only one system has to go down to make the others go awry as well.

Intermittent famine is the threat that humans have faced and survived most often, and we are well-adapted to it. We're not all that adapted to turning down food, and I have no doubt any more that the turning down of food opportunities is doing serious harm:

  • It sets up moral and anxiety-based relationships with foodstuffs: we have good foods and bad foods to choose from, and our morality and intellect are judged by those choices.
  • It creates "dieting," an artificial and unhealthy intermittent famine. This self-imposed famine condition sets  us up for internal forces built to fight a lack of food: compulsive food-seeking, a melting of social connections, a messianic value to restriction.
  • For some it breaks the development of normal social eating and intuitive feeding behaviors.
  • Others suffer by setting off a genetic cascade of thoughts and behaviors that make normal eating nearly impossible.... something we now call an eating disorder.
For those interested in this idea, look into Shan Guisinger's Adapted to Flee Famine hypothesis. Worth a read.

December 23, 2011

Too many "worst case" scenarios

It is easy to read an article like this, Woman dies after 16-year anorexia battle in 'worst case' that doctors had ever seen  and call it a severe case of anorexia. Really, I don't know, from her death or her weight history, how bad her anorexia was. I only know how very strong this young woman's physical constitution was to survive semi-starvation for so long.

Anorexia doesn't have to cause severe weight loss to kill, and it causes severe disability at perfectly "normal" weight ranges. Eating disorders cannot be measured by weight or appearance: they are mental disorders.

The weight loss isn't the anorexia's fault, in my opinion, it is OURS. Ours for seeing the weight loss as a sign of severity of illness - and the only sign. Ours for having a mental health system that only hospitalizes during crises. Ours for letting patients be in charge of seeking care, following through on care, and knowing when to raise the treatment level. This could have happened anywhere, and it does, every day.

Side note: what is the statistical probability that I've known so many families who report being told that their loved one was the "worst case" the clinician had seen? I hear it pretty regularly - and it scares me. Strikes me that more providers should be referring to professionals who HAVE seen enough serious cases.

December 22, 2011

Hope without help is not merry

Hope is good; empty hope is dangerous. I'm a little tired of messages of empty, airless hope.

Hope, to me, isn't just an attitude of optimism and belief in full recovery -- though those are essential for parents and clinicians to hold and keep. Hope is active. Hope is action. Hope is confident, assertive, and courageous.

Hope is also, at times, painful. Painful to hold for a patient who is in pain and has to experience distress and discomfort in order to recover. Painful to keep sight of when the patient feels undeserving and angry and rejecting our hope -- even finding it insulting. Painful to hang on to when those around us think it would be better for us to "let go" or "leave it to others."

Hope is different for loved ones than it is for patients. Patients don't have to have hope -- that is OUR job until we can. We should not require it, be disappointed in our loved one for not having it, and not wait or change our actions because we're waiting for it.

Hope, when offered as the only thing we can do, can be a cruel thing to ask of a parent. To hope we need more than platitudes and positivity: we need a plan. The plan may be to do something, learn something, call someone, stop doing something, do more of something -- or even to consciously and mindfully do nothing -- but it still needs to be a plan, not a capitulation.

Much of what parents are told to have is empty hope, and I'm weary of it. It can be one more way to say "back off" or to criticize us for what we have not done or want to do. It can be a way to tell us to stop feeling angry, or showing our distress, or asking uncomfortable questions. My job as parent is to hope, absolutely. But not just to hope, and not to hope into the ether. My hope is part of a plan that includes my action as well.

For a little bit of hope with a plan for the BIG picture:

AED and Hope Network 1 Family $1 Drive for Eating Disorders Research

December 20, 2011

Tell me again why we use the term "over" weight?

Aside from other sins of the BMI index, the weight of the words we use to classify BMI are absurd:

"underweight"
"normal"
"overweight"

"Under" means shouldn't be this weight, so does "over." "Normal" implies everyone should be in this range. All this is ridiculous. BMI was never meant to assess individuals, anyway, it's a population measure.

But making quantitative and value-laden classifications that indicates someone ought not be in that grouping is bad science

First of all, weight is influenced by many factors -- mostly genetics -- and isn't something one can decide to simply change.

Think of it this way: let's measure everyone's lung capacity and graph it up. There'd be people with readings all over the range, and some on the far edge are very unwell. But others with low capacity may be quite well, and may indeed be doing as well as they possibly could be considering their genetics and medical history. Those people "should" not be considered "under-breathed.

There are many,  but here's yet another reason to look with derision on the "overweight" wording:

Under Or Normal Weight Linked To Raised Risk Of Death Following Surgery

December 19, 2011

Do you believe in Pandas?

Anyone interested in eating disorders needs to know about Pandas. Your treatment providers should know about this enigmatically named syndrome.

Does Strep Throat Trigger Serious Issues?

You may still not believe it applies to eating disorders -- many don't -- and may conclude that it doesn't apply to your child. But still, I think all parents should be told.

December 18, 2011

Why Hollywood shouldn't tell the story: Scary Movie X

Parents like optimism. We like believing in our kids, in bright futures - we're built for it.

But, beware thinking of recovery like a victory narrative. Eating disorder recovery isn't a battle you win and then credits roll. Successful treatment doesn't mean you're done.

This expectation we have that we will drag our child bodily out of their hell and get them cleaned up and healthy and then sit back to watch them go through life without looking back is the wrong script. The real story is that successful treatment is the beginning of leading a life that is consciously free of dieting, disordered eating habits, using the body as a self-improvement project, and seeing exercise as a payment for eating and a stress-relief drug.

Successful treatment is followed by relapse prevention: regular medical and psychiatric check-ups, strong emotional regulation skills, connection with friends and family, participation in society, useful work, and a  good relationship with food and activity. The opposite of mental illness is robust mental HEALTH.

Sucessfully saving our children from a life of mental illness isn't a destination or a point in time it is a lifestyle. There are no credits, either - nor credit.

Most parents have this point at which they want to celebrate and "move on." Do celebrate (in private), and do move forward, but don't turn your back on ED or think he's like an enemy you've killed. The Hollywood ending you should be thinking of is the horror movie where in the last frame you see the hero doesn't see the monster is still breathing -- and you know there's a sequel in the making.

December 15, 2011

Do parents affect mental health? Of course

If you don't know me, I can understand that without that background my posts may seem "needlessly angry" or that I am on a "high horse."

I have blogged on this topic before:
Yes, some parents suck
"my personal experiences diminished and trivialized"

...and many other times to say very clearly and without reservation that parents very, very, very (save a few of these for later because if you read my blog you'll need them) much affect the mental health of our children. If we neglect or abuse our children we cause enormous and often irreparable harm. Sometimes we do things that are not overtly damaging but do cause harm anyway -- in ways we may never know.

But a person with an eating disorder isn't JUST an eating disorder, and an eating disorder isn't the sum total of that person's mental health. I'm not arguing that parents don't cause harm or make it more likely that an eating disorder be triggered or that we don't sometimes exacerbate and perpetuate the illness once in place. ALL I'm saying is that an eating disorder is not a sign that the patient has been neglected, abused, mistreated, bullied, teased, pressured, or influenced. All an eating disorder diagnosis tells us is just that. No matter how serious the symptoms, how severe the behaviors and the thoughts, this tells you nothing about the family or the life experience of the patient.

This is important because unless we separate the issues we risk harming the patient more:

If there is NO environmental problem then we cannot afford to put energy into that angle - the patient needs a confident, calm, loving family and treatment team even in the best of circumstances to save this person's life and future. This is most families.

If there ARE problems in the patient's history or present then those must be addressed FOR THEIR OWN SAKE and not based on the eating disorder. By linking the two we actually risk making the patient use the eating disorder behaviors as a distress signal -- and a default. An eating disorder only makes one's overall mental health worse.

Believe it or not, I'm not DOWNPLAYING parenting, I'm EMPHASIZING it. We parents need to step up and do some of the hardest, scariest, most personally challenging parenting we've ever had to do - and most parents never need to do -  if our child has an eating disorder.

Let's not give abuse or poor parenting a pass, and lets stop putting all parents under that suspicion.

December 14, 2011

The Thin Ideal and Anorexia Nervosa: It’s Not What You Think


The Thin Ideal and Anorexia Nervosa: It’s Not What You Think


Thank you, Dr. Ravin, for a brilliant challenge to the usual thinking!!

The etiology of bad ideas

This post has been edited.

I published a rant today about this study:

Etiological role of childhood emotional trauma and neglect in adolescent anorexia nervosa: a cross-sectional questionnaire analysis.

The rant hurt someone's feelings and they struck out at me very angrily. Regardless of my reasons for my rant, it feels unkind to defend it, so I've deleted it. Frankly, I've ranted endlessly about the same topic for years and I'm not adding anything to the literature.

I see and hear and overhear so much needless pain every day. Every day I get another message from a parent who has spent years being kept at bay by clinicians with the argument that he or she has contributed to, caused, failed to prevent a dearly loved son or daughter's life-threatening mental illness. I try, often in vain, to convince that parent that eating disorders are not caused by parents and in fact what is needed is for the family to stand up and get to work learning about the illness, getting effective care, and changing lifestyle and priorities to provide an environment where recovery is first - for as long as it takes.

But still, my frustration can end up burning me out, too, and today I choose to delete my rant and say to Anonymous, I'm sorry.

Causing any more pain isn't my goal, ever.

December 13, 2011

And, it starts... the myths that kill

I taped the Starving Secrets second episode on Friday and watched it yesterday morning. You've heard my thoughts on the first episode on this blog and at Huffington Post.

There are times when I'm grateful for long commercial breaks - which I can just fast forward through - as it made the show itself blissfully short.

I had hoped it wouldn't happen, but the Big Myths are in full evidence in this episode. I'm doing this so you don't have to watch it, mind you. This episode's messages:

You have to want to get well
          This is a dangerous, dangerous myth. Not "wanting" to get well is what it seems like to those watching, and seems to be what the patient is saying, but let's reframe: patients have a mental illness where one of the symptoms is not really knowing one is ill, and another is the ENORMOUS physical and emotional difficulty of ending the behaviors. How much you "want" to "get better" is almost irrelevant. If what you see is a bathtub of cobras and not a normal meal, then I don't think you are likely to "want" it. If wanting to sit in that tub of snakes is a requirement of treatment, well, I wouldn't "want" it either. Truth: eating disorders cause both anosognosia and immense barriers to recovery. Your loved ones and your treatment providers need to "want" you to get well, and do so with confidence and practical help until you can.

The root of your eating disorder is your inability to be angry at your mom
          Oh, I've devoted years to dispelling this one, of course. What your mom did or didn't do, did or didn't see, did or didn't understand... is relevant, but not for the reason being implied here. If your family has been held at bay and lied to and frightened by behaviors and their concern has been hostilely rejected over and over then the parents are likely to be paralyzed, confused, and unhelpful. The antidote to that is helping parents understand that an eating disorder is a treatable mental illness and that the symptoms are remarkably similar between patients and remarkably improve with improved nutrition and symptom intervention. How would the parents learn this? Well, by shows about eating disorders, naturally. But not THIS one. Truth: The root of your eating disorder is a problem with your brain function exacerbated by and maintained by your eating behaviors. Your mom is trying to help you, and is even willing to be blamed and demonized on television if it will help you.

You are "dying to be thin"
          Eating disorder patients often believe they are losing weight and unable to eat normally and refrain from purging because they "want" so badly to be thin. I understand that: they are seriously mentally ill at the moment. What I don't understand is why treatment providers and responsible journalists would still believe that. This is a cruel, unforgivable, tragic myth that is, truly, killing people. The symptom of pursuing weight loss or "refusing" to gain weight or eat normally or stop purging is a SYMPTOM. The message that these young women have serious eating disorders because they want to be thin is dangerous and absurd and condescending to the patients. Truth: Your compulsions around eating do threaten your life, but you are not choosing these thoughts nor is it about weight loss. You are not vain, you are not weak, you are not failing. You will need to normalize your eating and regain your health so you can think more clearly and fight this mental illness. You need people around you who understand this has nothing to do with wanting to be thin.

But here's the greatest myth of all: that the eating disorder advocacy world has to put up with dangerously misleading coverage of the illness in order to get any coverage. The problem isn't that we can't get media coverage, it is that we have failed as a field to come together on some common principles. The myths above are believed by the public, and the media, because most of the eating disorders world believes them. Until that changes, we will get sensationalist media based on myths. We cannot pool our resources and have an effect on the media unless we come together.

December 12, 2011

Re-feeding: it isn't just for anorexia

I keep hearing people say "food is medicine is only an issue with anorexia." This isn't true. Normalizing nutrition and eating are fundamental elements of treatment for ALL eating disorders.

Yes, with anorexia there is usually a need to regain weight lost or catch up on growth delayed. This isn't a matter of just getting "out of danger" and out of the hospital. This is about getting up to the weight, body composition, and balanced of nourishment that person needs for OPTIMAL health - based on that individual's unique normal body dimensions.

With bulimia the patient may be "average or higher" weight according to population charts but they are still usually either experiencing weight suppression (below highest lifetime weight or body composition) or experiencing erratic nutrition - delayed meals or unbalanced meals. Many have also not recovered from an earlier bout of malnourishment - a process that can take 6-12 months or longer.

The purge cycle, in bulimia and with purging anorexia, involves erratic nourishment and mealtimes.

Binge eating disorder involves intermittent fasting and binging - and unbalanced nourishment.

"Food is medicine" means more than just feed 'em up and gain some weight. It means that the full range of nutrients: fats, proteins, fiber, vitamins, micronutrients, fluids, etc. are being taken in at regular intervals in a calm and safe environment. It means desensitization to feared foods, and "exposure and response prevention" by way of normalized eating. Normalized eating helps to treat the mental symptoms: mood, cognition, attention, obsessions, compulsions.

Food is medicine isn't ALL the treatment needed, but it isn't optional -- and it isn't just about anorexia or about weight loss.

December 10, 2011

Eating Disorders Coalition expands insurance campaign to address all levels of care!

Brava, Eating Disorders Coalition!


EDC Addresses All Treatment Denials


Finding effective, science-based, treatment that fits a family's needs is hard enough - paying for it is another level of hell for US families. The EDC is trying to support American families: support the EDC and contact them with your stories of insurance denial!

December 5, 2011

Writer seeks interviewees

New York Times writer seeks interviewees:

--> eating disorders therapists or clinicians with a history of eating disorders themselves
--> eating disorders patients who have been treated by therapists, nutritionists, etc. who have had a history of ED themselves

For more details, go to Harriet Brown's blog!

cognitive distortions

One ought not psychoanalyze the world, but it is tempting. Every once in a while I am reminded of how common the thinking patterns of depression and chronic anxiety are in the general population and how nearly every sour interaction seems to involve one of the cognitive distortions below. I know it is wrong, but I wish I had a little reset buzzer I could hit every time I face one of these - in myself or others:
]

  • All-or-nothing thinking (splitting) – Conception in absolute terms, like "always", "every", "never", and "there is no alternative". (See also "false dilemma" or "false dichotomy".)
  • Overgeneralization – Extrapolating limited experiences and evidence to broad generalizations. (See also faulty generalization and misleading vividness.)
  • Magical thinking - Expectation of certain outcomes based on performance of unrelated acts or utterances. (See also wishful thinking.)
  • Mental filter – Inability to to view positive or negative features of an experience, for example, noticing only tiny imperfection in a piece of otherwise useful clothing.
  • Disqualifying the positive – Discounting positive experiences for arbitrary, ad hoc reasons.
  • Jumping to conclusions – Reaching conclusions (usually negative) from little (if any) evidence. Two specific subtypes are also identified:
    • Mind reading – Sense of access to special knowledge of the intentions or thoughts of others.
    • Fortune telling – Inflexible expectations for how things will turn out before they happen.
  • Magnification and minimization – Magnifying or minimizing a memory or situation such that they no longer correspond to objective reality. This is common enough in the normal population to popularize idioms such as "make a mountain out of a molehill." In depressed clients, often the positive characteristics ofother people are exaggerated and negative characteristics are understated. There is one subtype of magnification:
    • Catastrophizing – Inability to foresee anything other than the worst possible outcome, however unlikely, or experiencing a situation as unbearable or impossible when it is just uncomfortable.
  • Emotional reasoning – Experiencing reality as a reflection of emotions, e.g. "I feel it, therefore it must be true."
  • Should statements – Patterns of thought which imply the way things "should" or "ought" to be rather than the actual situation the person is faced with, or having rigid rules which the person believes will "always apply" no matter what the circumstances are. Albert Ellis termed this "Musturbation".
  • Labeling and mislabeling – Limited thinking about behaviors or events due to reliance on names; related to overgeneralization. Rather than describing the specific behavior, the person assigns a label to someone or himself that implies absolute and unalterable terms. Mislabeling involves describing an event with language that is highly colored and emotionally loaded.
  • Personalization – Attribution of personal responsibility (or causal role or blame) for events over which a person has no control.

December 4, 2011

OCD and eating disorders

There is a really interesting conversation going on right now on Around the Dinner Table about obsessive compulsive symptoms and eating disorders. As usual, some very bright parent minds are being applied to the topic:

Subject: The relationship between EDs and OCDs

December 3, 2011

Send my your tired, your poor....your Growth Charts

I'm preparing a presentation to a group of pediatricians, arguing several points:

  • That healthy children should follow their historic growth curve, not be normed to an average age/height BMI.
  • That having a higher or lower percentile is not a sign of ill health or healthy restraint, but changes in that percentile CAN indicate a change in health or behaviors.
  • That telling children to change their weight is a poor health policy.
  • That healthy metabolism and growth are best served by  attention to all aspects of health: eating, activity, sleep, mental health, other health issues.
  • That the goal of healthy metabolism and behaviors stands on its own and causes harm when done in pursuit of weight loss. 
  • That parents are in charge of feeding and lifestyle, not their young children.
So, I need some help from you all? I want to ask you for your child's growth curve chart. Even if it is spotty, I want to collect enough of these charts (taking all identifying information off, of course) to illustrate that children's mental health problems with eating correspond to changes in their growth percentiles. As far as I know, and I've looked, no one has made this kind of information available. I will collect these and publish them on the F.E.A.S.T. site along with other supporting information. Most pediatricians are still thinking that a child has to lose weight to have an eating disorder when really the first sign is a failure to grow as expected. Most pediatricians still believe that a child who has always been at the 80th percentile for growth "would be healthier" if they dropped to the 50th. Many still believe that eating disorders are just a weight issue, and that eating disorders are just a measure of dangerous weight loss/purging.

I believe if I could gather enough of these charts, we could change practice around the world. Will you help me?

If you have a chart plotted already, please send it to me. Mark on it when your child's mental symptoms appeared or skyrocketed, and where they abated or receded entirely.
If you have not done so, please take all the weight/height data you have and plot it, or send it to me and I'll have someone plot it. Here is the chart to use: 
Not just anorexia, by the way: patients with bulimia and BED and all forms of EDNOS as well.
Do not think that your loved one's chart doesn't matter. If it DOESN'T show a pattern in this way it is still important. If your child had a lag between weight restoration and symptoms, that's important.

I'm tired of waiting around for researchers to establish what parents here already know. And maybe we're wrong! Let's figure it out.

December 2, 2011

WOW

 A poem sent to me by my friend, Erika, that will add some sass to your walk today:


Hollie McNish, Performance Poem, WOW


If you're not usually one to seek out poetry, make an exception for this one. It's worth it!!!


**thank you, Erika!

A school of giant, poisonous red herrings

Dr. O'Toole of the Kartini Clinic delivers a powerful blow against all-too-common nonsense about eating disorders:


Parents and Media Not to Blame for Anorexia, Doctor Says

Dr. O’Toole, author of “Give Food a Chance,” argues that anorexia is a brain-based disorder, more like epilepsy than anxiety or OCD.


Let's stop the ping-pong ball of "if it's not parents then it's the media" "if it's not media its academic pressure" "if it's not abuse it's a choice" "if it's not this then you're saying it is that." "no I'm not, I'm saying it's those!"

It's time to look at the facts and stop rehashing the same theories as if there's no alternative. There are things we know about eating disorders and things we know are not true. Finally, we've got more clinics and clinicians speaking up directly - and daring to go up against colleagues in the field - with clear language.

Periscope

In an attempt to keep my head down and focused for the past very busy month, I have not kept up with reading blogs or Facebook or Twitter**. What a loss!

I am now skimming through amazing, insightful, personally meaningful posts by many people I so admire and respect and it is like coming into a party that has finished and all that is left is evidence of a very good time. I want to go comment on everything - and praise everyone - and thank those who were kind enough to read my blog while I was rudely not keeping up with anything!

The opposite of isolation is: the Internet. Thank you, friends, for being there and being such an interesting community. So much to read means so much to miss! The truth is, writing blog posts without reading widely and in real time of other blogs is missing the point(s)!

**actually, I've never been able to keep up with Twitter. It's impossible.

December 1, 2011

Growing pain over celebrity treatment show

Remember the commercial where a well-known TV doctor said "I'm not a doctor, but I play one on TV?" This is like that: Starving Secrets with Tracey Gold. Except this is reality TV and real people are being acted upon.

I was one of many in the ED world who were asked to help find "victims" for this show - the producers not getting the irony of that word. As usual, the producers lose interest when I ask them to understand the risks to patients and to families of this kind of exposure especially if done in a sensationalist manner. Everyone I know declined the "casting" call, but supply exceeds prudence.

I am very supportive of families getting out there into the media but carefully, thoughtfully, and NOT while they are still in the thick of it. Media exposure is not for everyone and can do great harm to the patient. I've turned down major TV show exposure for myself and for F.E.A.S.T. because I haven't yet found a responsible journalist at that level who has a clue. The price is too high.**

20/20 wanted to follow a family of a young child currently experiencing Family-Based Maudsley Treatment - risking that child's life "to save others." Another major US network recently tried to arrange a gotcha reunion between a patient and her mother - as a learning tool. Now Lifestyle has offered 90 days of "free" treatment  - and association with a celebrity actor and celebrity psychiatrist - as an entertainment to the public, calling it "access to the best opportunities and/or resources available to them at their disposal." I'm naming names here because parents need to know that prominence in the media doesn't equal prominence in expertise. Not all media is helpful, and in fact the impact of shows like that can be harmful for the "victims," the audience, and families currently trying to understand their care options. (Just watched the Anderson segment about the Starving Secrets show and my mouth is still agape - so glad I didn't do that show. Except for the message to get help, the show perpetuated the usual idea that this is girls who are under pressure to lose weight who just go too far. Treatment was painted as something you had to want enough, and that what you were giving up was thinness - and that it never really goes away. Seek evidence-based treatment? No. That boys get eating disorders? No. That anorexia is not the only eating disorder? No. That biological predisposition is key? NO. There was one really good aspect, however: it did advise parents to take action, "take control" and seek care. Thank you for that. Truly.)

Parents need to know that the promise of "free" treatment on shows like Dr. Phil is a lie. It is not free it is buying the story of financially compromised families. These are "free" marketing for publicity-seeking for-profit clinics - not a sign of good care. There is a coercion effect of being filmed, and being indebted to people. The day of filming is the last day of any help; the producers get their product and that's the end of it. The promise of "helping others" is also suspect. The producers are not trying to help others, they are trying to keep ratings up and keep their jobs. If people are helped, I'm sure they don't mind, but if not - that is not their responsibility. Don't expect a Christmas card, unless it is a solicitation for more exploitation. (I've talked with families victimized and then dropped - in worse shape than before.)

I want media attention to eating disorders. I know it matters: I get a call or email every time a friend or family member sees a spot on TV or an article. They are happy to see the topic brought up, as am I, but don't understand my dismay when the information and messages are so off base.  The rub is that if you are responsible, you don't get airplay. That leaves the screen to those who are desperate, extreme, and not getting good clinical advice. (Very few reputable treatment providers would advise a family to do this kind of media.)

Remember Laetrile? No reasonable journalist in 2011 would do a piece on that once-touted miracle drug for cancer. They would be roundly lambasted and would struggle to find ANY oncologists to support them. But with eating disorders anyone can be an expert and all forms of psychotherapeutic Laetrile are still available. There are no certifications, no boards, no specialty field at all. Anyone can call themselves an ED expert and there is no way to tell the difference.

I, for example, am not an eating disorders expert. I know a bucketload about eating disorders, but I am not an expert and should not be treated as one.

Lifestyle TV calls Gold "one of the world’s most recognized advocates and role models for educating people on the emotional and physical dangers of eating disorders." That's nonsense. Tracey Gold, who I've never met and aside from her book (which I found unhelpful) I've not yet encountered her in any ED activism or work over the past nine years, says she will work with women in the grips of anorexia or bulimia as she uses her own experience to reach them in ways no one else can." Oh, dear. If she's not using the current science and working with current science-based experts, she could do active, unknowing harm. If the content is what I've seen in interviews so far and the promo material, and my exchange with the producers, I'm worried. Her insights into her illness may or may not be good - I don't know - but I also have no reason to trust they are important just because I watched her as a kid on TV.

I'll watch her this time, too - as will countless others who care about this issue - with hope against experience that it won't be the usual, and with me are a small army of protesting parents if it is not. Celebrity is a double-edged sword, and this is too important an issue to simply act the part of an expert when lives are at stake.

**I'm still looking! Call me?