February 28, 2013

April Lobby Day in Washington!

A new EDC NATIONAL Lobby Day has been scheduled for April in Washington DC. I hope all US parents will consider joining in.

You know, I hear all the time from parents in that first few months after the diagnosis. They're shocked -- we all are -- not only by the illness but the "Why on earth hasn't someone..." and the list is long of all the things we need. Better research, better research dissemination, better policy, better public awareness. Well, someone has to DO it for it to get done, folks: if not for us then for the next cohort of families getting smacked in the face.

Participating in EDC's Lobby Day is not just being a face in a crowd. Each person there truly TRULY has an impact. Legislative staff pay attention not only to what we say when we tell our stories -- and that is all you need to do -- but they also realize that anyone who makes it to their office represents many many more.

EDC knows what it is doing and how much work and relationship-building and deep knowledge of the legislative process it takes to make change. You can't charge in with just passion or a good idea. It takes years of work and selfless dedication. EDC does this, and has a track record of success, without self-promotion or an enormous budget. They do this work not to raise funds for their organization or to promote themselves: they are a coalition of organizations, families, researchers, and clinicians who pitch in to help. We all play a role and we are all missed if we're not there.

Don't worry: you don't need to understand the legislative process or how to find your way around the Capital. You get training, you move around with a group, and all you need is YOUR UNIQUE STORY. That story matters. Go tell it!

February 27, 2013

bla bla fishcakes

For those of you who know what I'm talking about there is good news.


It's regional, and it's treatable, and she is doing well.

I need a drink. (She is already doing so!)

February 26, 2013

This is not Rumplestiltskin

There is a statement in the ABC article I mentioned yesterday that has people grumbling.

"The illness is biological, but the triggers are social: trauma, divorce, even a throw-away comment like, "Aren't you a chubby little girl," said Grefe. "You are born with the gun, but life is the trigger -- and there are a lot of them."

I hear that and I think of magic spells and mythical curses. Rumplestiltskin and secret spells. The idea that a child is one statement or one life event from horrific mental illness is, well, not supported by the science. It's not supported by the rest of the article! This is a Hollywood vision of mental illness and it is time for us to stop promoting it. It isn't true, and it causes harm.

It says "Your child has a life-threatening delusional terrifying mental condition and SOMETHING DANGEROUS triggered it. Suspect everything, just to be sure. Regret everything. Put your energy into that and don't think your child will get better until you've made the world perfect and you've apologized for everything."

What's really going on is that the evidence for a biological basis for eating disorders is no longer being denied it is simply being misunderstood and re-packaged to suit the same old same old blaming we have always done around eating disorders. If a "throw-away comment" can "trigger" life-threatening mental illness and expected life events like divorce and "trauma" can too then maybe the idea of "trigger" is absurd and needs to be revised to "life."

Life "triggers" eating disorders, and I don't think we're going to prevent life so probably better to work on treating eating disorders instead.

February 25, 2013

ABC News on Anorexia Nervosa in Young Children

I have mixed feelings on Eating Disorders Awareness Week. Being an ED Curmudgeon, I want the "Awareness" to be of the right things and the most important things. I brace myself at the end of February each year for the distorted mirror illustrations, the phrase "painfully thin," and the phrase "starving for" followed by almost anything.

And yet, and yet... this is the week that many news outlets will assign pieces on the topic and these are opportunities to refresh and update the public "awareness" of eating disorders. The parent Googling in the next year is more likely to find better information than before.

It's only the first day of the "Week" here in the US but it comes with glad tidings:

Anorexia Can Strike and Kill as Early as Kindergarten

In which such important statements are made as:

"Anorexia nervosa is a relatively rare and chronic brain disorder with no known causes."

"But it's not caused by the media or by pressure to be thin, though people like to blame that," she said. "Parents don't cause eating disorders and children don't choose to have them."

"You can't cause it even if you wanted to," said O'Toole. "It has nothing to do with fashion magazines. We see farm kids, religiously-raised kids who are homeschooled and have no access to television ... who developed anorexia nervosa."

"Anne was desperate, so she went online and found the "Magic Plate," a term used to describe how parents approach feeding their child -- and the website for the organization F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders)."

Now, those who know me will notice there is an error in the piece, and ABC is going to fix it. You'll also know that one of the quotes in the piece sticks out painfully as refuted by most of the rest, but sunlight is the best way to see how different organizations approach the issue.

"Awareness" that some still look at serious mental illness as something "triggered" by random comments is also important. I believe that belongs in the category of women going "mad" from reading novels and how foul humours cause illness, so...

I want to note with enormous, enormous gratitude to Susan James and ABC News the illustrating photo for this piece. A real child, just a child - an illustration of the reality of this disorder and the lovely children we need to save and the families that love them dearly.

February 20, 2013

Effective advocacy

Leah Dean's post on effective, collaborative, and thoughtful advocacy on the F.E.A.S.T. News blog on ideas shared at recent NIMH meeting which F.E.A.S.T. was a part of earlier this month.

Keys to Becoming a Better Advocate

On cat

"Can you chat?" said I, on hearing the news.
"In car" she explained.
but her autocorrect preferred "On cat," which perplexed me no end, struggling for interpretation and an appropriate response.
"Bloody autocorrect!"

There is no good time for bad news, I suppose. But when we can still "LOL" over autocorrect, there is life.

February 17, 2013

do scientists need social media? I know social media needs more science!

I've just joined a social media committee at the Academy for Eating Disorders and enjoying discussing the role of social media in science with others who are active in this way. Great example, the team is discussing this podcast on the topic, Do Scientists Need Social Media on a LinkedIn forum that is being Tweeted and +1 and liked on Facebook..

I know, scientists and clinicians are busy people and don't need to be wasting time on uneducated fluff, right? Yet plenty of scientists, and busy people, are finding social media more than just a time-sucking popularity contest. I see this in the ED world, where some of the brightest thinkers are as fluent in Facebook and Twitter as anyone.

Using social media to network with other scientists, spark conversations, popularize ideas, and learn from others is an underused, enormous, and largely free resource. Having to hear from folks about what your work means to them - rightly or wrongly - is important to remaining current in an interdisciplinary, global science environment. (Many people who have joined the world of social media didn't quite get that they would be hearing as well as speaking, and aren't always happy about the noise!)

I used to be more tolerant of the anti-Internet snobbery and condescension that plagues the topic. These days I tend to feel sorry for those who think it is an insult to say "Yes, well, I'm not on Facebook."

Not that everyone should be, but the assumption that there is nothing valuable there and that it is a higher moral position, or a sign of a busier or more important person, well: those days are gone.

February 12, 2013

Lungleavin Day

I learned recently of a wonderful activist with a generous idea: Lungleavin Day. It's a tongue-twister with an inspiring message. Heather Von St. James has taken her experience with Mesothelioma and even her surgery to remove a lung into something we can all relate to. She calls together friends and family every year on the anniversary of her surgery to celebrate: here is her description:

One of many things that came out of my battle with cancer is a holiday I created called Lungleavin Day. This is the anniversary of my surgery (Feb 2nd) in which my entire left lung was removed. Lungleavin Day is a celebration of life and facing your fears. Each year we celebrate with nearly 100 loved ones. The idea of this day is for everyone to fill a blank plate with their fears and smash it into a bonfire at my Lungleavin day party, symbolizing people throwing their fears to the fire. I also use Lungleavin day as a fundraiser for mesothelioma research.

I so often use plates in my analogies and discussions of eating disorders, for obvious but indisputably tired reasons. I love this new image of plates, of "double-edged" gratitude, and of how people face the difficult passages of life.

Go check out Heather's blog and get inspired!

February 4, 2013

Socker madness

Sock It to Eating Disorders - 11th - 17th February 2013

Raising funds - Sock it to eating disorders

During Eating Disorders Awareness Week, get together with work colleagues, friends or family to fundraise for Beat and help us support people affected by eating disorders and their families, friends and carers.
Beat-SOCK-IT-logo-WEB.jpgHow will you wear yours? Here are some ideas to get you started:
  • Organise a silly socks day at work or school and ask everyone to donate £1
  • Decorate your socks in Beat colours
  • Take part in a sponsored event in your silliest socks
  • Knit, crochet or make your own socks and sell them to your friends and family or on Ebay for Beat
  • Encourage your sports team to wear silly socks for a match or training session
  • Make and sell sock shaped cookies
We would love to hear what you're doing, email fundraising@b-eat.co.uk or call 01603 753336 and don't forget to send us your pictures for our Sock it to eating disorders photo gallery!