Monday, August 18, 2014

Advocacy Monday: On Cicadas, Webs, Genes, and Helixes

Guest Post by IrishUp

This is a post about advocacy and research, two topics near and dear to my heart. Oh, and Charlotte Bevan. THREE topics near and dear to my heart.

Once upon a time (really, only a couple'a'few years ago), the Around the Dinner Table parent support forum had an ongoing thread, Cicada Calls. The idea was to let those of us in this community who had time and energy to spare, to share opportunities to spread the word regarding Eating Disorder myths and facts, Evidence Based Treatment for EDs, and (where appropriate) the resources available here at ATDT and at FEAST. It was an opportunity to "pay it forward", by paving an easier path for other parents, than the one we may have followed to get here ourselves.

Charlotte was one of our most active Cicadas. OF COURSE. Because that is what Charlotte did - galvanize herself and others into action. Hold out a hand, put a pot of tea on, lend an ear, pass a hankie, or maybe the Big Girl Pants; Hold feet to fires; Fix things that were Wrong.On.The.Internet; Build support webs and coalitions.

One of the last of the Cicada Calls, was around a problematic blog at the Huffington Post.  The post, 'Food is a Family Matter' by Dr. Randi Epstein, centered on the book "When Food Is Family" by Judy Scheel, PhD- that book and Dr. Scheel had also been the subject of a Cicada Call.  The problem with each was the same- outdated theoretical understandings of ED, and treatment recommendations unlikely to be very helpful for the vast majority of sufferers and their families. 

The paragraph from Dr. Epstein that completely grated my gorganzola was this one:

Unfortunately, at this point, the hunt for the illusive eating-disorder gene is just that. Illusive. Perhaps one day, doctors will be able to tailor treatments to fix genes that prompt self-destructive behavior. For now, without any quick fix, the best solution may in some ways hark back to something a bit old-fashioned: looking at the home environment and exploring your and your child's emotional issues around food, control and power.

I have been forcefully reminded of that whole bruhahah just recently by this PSA from Drs. Francis Collins, head of the US National Institutes of Health, and Thomas Insel, head of the National Institute of Mental Health, in which they discuss how quickly our understanding of the molecular biology of mental health diagnoses is evolving:

They mention schizophrenia (aka schizo-affective disorder(s)) specifically, which is interesting. Schizophrenia and AN have about the same populational prevalence (~1%), and a similar average age of onset (15-17yrs old). Even more intriguingly, some recent work suggests that there are shared genetic pathways, as illustrated in the webbed graphic below:
(The size of the dots correlates to the number of associated genes identified thus far, the squares & dotted lines indicate shared genetic pathways. From Vidal et al, Proceedings of the National Academy of Sciences, as in the NYT, 05/05/2008. h/t Carrie Arnold).

Despite the similarities, genetic research into schizophrenia is years ahead of that for AN (and EDs more generally). AN is described as "rare" - a qualifier not seen in discussions of schizophrenia. And the Schizophrenogenic Mother (yes, really!) has been sitting in the dustbin of history since a decade or more before the Refrigerator Mother who caused autism got there, and they are both STILL waiting for their sister Helicopter (or otherwise Attachment Impaired) Mom to join them, here in the 21st Century!

It is the raw injustice of this, that Charlotte wanted to address, in starting Charlotte's Helix. As Dr. Cynthia Bulik notes, there is a brilliant ray of hope in what is happening in the genetics of other disorders. What the universe of ED lacks, is numbers, and visibility. FEAST has partnered with Charlotte’s Helix because of this shared mission. In the US and AUS, the ANGI project (links to each at the link above), and Charlotte's Helix in the UK, hope to combine to get enough sample donors to bring the science of EDs in line with other serious illnesses.

Charlotte’s Helix continues the work Charlotte herself did: raise awareness, raise visibility, get the science together so that we can yank the WHOLE of ED treatment, kicking and screaming, into the 21st Century.

Don't worry, ED world, we'll make you some tea, and loan you the Big Girl Pants. 

IrishUp is a long time member of F.E.A.S.T., and a current moderator on Around The Dinner Table.  Off the internet, she is a clinical researcher with interest in barriers to the adoption of Evidence Based Medicine practice.

Monday, July 28, 2014

Meet and March

F.E.A.S.T. Coffee Break at the M.O.M March in D.C.

Are you planning for the March on Washington in September?  If you are: Hurry and register.....September is fast approaching!

Travelling may be a challenge for many reasons-  however, for those of you attending (or considering) a F.E.A.S.T. Coffee Break is planned for Tuesday before the start of the day's events.

When:  10:00 am Tuesday, September 30, 2014
Where:  Starbucks, Lobby of Marriot Hotel, 1331 Pennsylvania Ave NW Washington, D.C.
Registration information:

For those of you on the fence or just beginning to contemplate coming.....please do.  Putting real faces (and families) to the statistics goes a long way in helping dispel the myths around this illness.

Wednesday, July 23, 2014

Victim, Villain, Hero

I am in a trial. No worries- am not on trial. Along with feeding and watching  (the ED version of 'Eat, Pray, Love') I also do some law.  This has been a crazy summer of trials and they tend to suck everything into them like a black hole.  So, have had little time to sit and get a blog post out (extra energy is directed to above noted feeding and watching) but litigation has me thinking about conflict and stories and eating disorders (like, I said....everything gets sucked into the black hole...even eating disorders).

There is a classic conflict story with 3 characters:

1. The Victim
2. The Villain
3. The Hero

Actually, you could argue that these 3 characters are in every classic story full stop.  The conflict triad is the basis for a primal narrative script that all (not just conflict) stories use (think of your favourite fairy tale or any soap opera or every Hollywood blockbuster you have seen):    Victim (damsel in distress/underdog/orphan who lives under the stairs);   Villain;  Hero (Hollywood especially loves when the Victim becomes the Hero).

Our brains know and love this script.  It feels written into our subconscious and we respond.  Ok- here is my ED leap-

I have been seeing stories of Kesha in my news feed for the last few weeks and they all follow that script:  Kesha is the victim; the Villain is either the "big bad Media" or the "Music Industry"; and, the Hero is rehab/Insight/self-acceptance empowerment (Keshia has the power to love herself no matter what the pressures of the industry).

Same story over and over.  Writers write this story; readers respond to this story. So, I do we reframe? Can we use the same script but recast the players?

Here is my recast:
Victim: Kesha or...Any of our kids
Villain: how about "the perfect storm" or "biological brain disorder" or "precipitating weight loss" or "severe symptomology"
Hero:  "Proper Treatment" or "access to experienced evidence based support" or, maybe even just plain straight up 'Science'.

Let's use the script to our advantage.

Thursday, July 17, 2014

Information, Support and HOPE

Project Hope Exchange

This is a really neat project:  A data base of easily accessible messages of hope.

Please consider taking just few minutes of time and leaving a 30 second message on Project Hope Exchange.  It is simple, really.  You can do over the phone or online. 30 seconds.

Information, support and hope got many of us through the worse of it.  Pass some of that on for another family.  The video below gives direction and a template.  Think back to the early days and what gave you hope.....and then tell a stranger-friend on the phone.

Let's make sure families caring for children diagnosed with eating disorders hear that they are not alone and that there is reason to hope.

Friday, July 11, 2014

Friday Round Up and a Birthday Celebration

A few interesting recently published studies:

1. Assessing eating disorder symptoms in adolescence: Is there a role for multiple informants?
Findings: Epidemiologic eating disorder studies should consider the potential value added from incorporating parental reports, particularly in studies of males. 

Interesting....Yes!  Ask Parents what they see.  Wouldn't you think?! (especially with an illness where patient may be anosognosic).

2. Mandating weekly weight gain in a day treatment program for eating disorders.

Findings: Post-treatment weight was significantly higher in patients treated in the required weight gain protocol compared to those treated in the recommended weight gain protocol. All patients, regardless of which program they completed, showed improvements in the measures of eating-disorder and comorbid-psychiatric symptoms.

Interesting.....'required' weight gain protocol yielded significant higher results than 'recommended' weight gain protocol.  I guess that is why LSUYE (Life Stops Until You Eat) yields higher results than "Please, finish if you can".

3. Rank perception and self-evaluation in eating disorders.

Findings:  People with EDs showed vigilance toward social rank-related stimuli and lower implicit positive self-evaluation than HCs. Self-report data confirmed the behavioral findings and showed that people with EDs had higher levels of unfavorable social comparison, submissive behaviors, and external and internal shame than HCs. People who had recovered from an ED showed an intermediate profile between the two groups.

Interesting.....that low self-evaluation is a 'symptom' not  necessarily pre-existing.  I quite hate the term 'low self-esteem'  (never sure what the heck it means)  and I absolutely hate the prevailing pop-culture notion that eating disorders are the providence of 'girls with 'low self-esteem'.  The plummet in self-esteem (self-evaluation) often comes after onset.

and, finally....

The Helix committee in the UK has announced the "I choose to give" campaign to commemorate Charlotte's birthday.  Charlotte's birthday is this week.  It is the first birthday since her death and we all still miss her madly.  Laura has written a wonderful blog piece today about how we can channel the missing and do our bit to continue Charlotte's work.  Find it here:  Laura's Soap Box: Celebrating Charlotte's Birthday.

Happy Weekend!!!