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  The problem with each was the same- outdated theoretical understandings of ED, and treatment recommendations unlikely to be very helpful for the vast majority of sufferers and their families.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.