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wewillpersevere

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Reply with quote  #1 
I may sound like a crazy mother, but after we've gotten past the worst, I cannot accept that there is so much ignorance in this world regarding eating disorders. We all know what it feels like, and it feels terrible, it harms our children and us, their families, making recovery a very long and difficult process. I am a psychologist, and I know this disorder is not a choice, it has nothing to do with logic and reason, nor with the 'unconscious' or any of that crap. Basically, it has nothing to do with what I was taught so irresponsibly when I got my psychology degree.

I really, really want to go back to school, in the hopes of learning something new about anorexia specifically. I know many of you have SO many more important things to think about, but I would like to know what is needed at this moment in the world, maybe proving the neurobiological basis of anorexia? What would you like to know, or others to know? How can I do something worthwhile to help this disorder be understood? I would really appreciate any input. I feel like I've been wanting to go back to school for the longest time, never quite knowing what I should study. Now I know, it's clearer than ever. 

Thanks for your time and any ideas you have.
cnkinnh

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Reply with quote  #2 
I totally understand where you are coming from and if I already had a background in psychology as you do, I might be looking into much the same path. Since D has been ill, I've learned that almost everything I believed previously about eating disorders was wrong. And I've always considered myself to be a relatively intelligent, well-informed person.

What would I like others to know? That this is a brain disorder. We've come to understand almost every other mental illness as such - schizophrenia, bipolar, substance abuse, depression. Yet eating disorders are still awash in these myths of psychobabbly emotional disturbances.

I had a bit of a 'eureka' moment recently when I saw a parallel with alcoholism. This is totally my own, uneducated thinking; I could be completely off base here, but here goes:

I think we as a society have come to really understand alcoholism as a mental illness. When an alcoholic says "it's not about the booze" and tries to blame his/her drinking on various life circumstances - relationships, job angst, etc - we generally understand this to be BS blather that's a symptom of the illness. Life circumstances may trigger a person to drink, but for a true alcoholic, the drinking takes on a life of its own and becomes a problem in and of itself that makes everything else worse. It *is* about the booze.

Society in general, seems to understand this nowadays.

But when it comes to eating disorders, when the patient says "it's not about the food," and similarly blames her/his ED on parents, relationships, society and the media, this is somehow taken as gospel. And this is wrong. It *is* about the food.

We're almost a year into my D's treatment and just this evening I had a conversation with my H that indicated that he *still* subscribes to the psychobabble blather as root cause BS. It's amazing to me how deeply rooted and pervasive this is. And it needs to change.

My two cents, anyway.

__________________
15yo D, first diagnosed 2015 with RAN. Diagnosis changed several times along the way, they are currently saying lifelong mild ARFID, complicated by major depression and AN starting age 13. Everything is atypical with her. FBT less and less effective after 2+ years. 
Psycho_Mom

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Reply with quote  #3 
Hi,
Well, since you are already a psychologist, and it sounds like you are now aware that what you were taught in your initial schooling to be a metal health professional was wrong--perhaps you could inquire into why so many mental health classes, for professionals and also the general university 101 classes, are STILL, TODAY, including information that is outdated, wrong, harmful and omits vital info?!

It's much easier to explain the neurobiological base of ed's to someone who's never learned anything about the subject, than to a college student who just took Abnormal Psych and learned about "control" and detachment issues in anorexia and "ego deficiencies" and family dynamics and blah blah blah.....and naturally thinks they know something about it.

best wishes,

__________________
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
ed_newbie

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Reply with quote  #4 
Excellent study topic.  Here are a few things to consider:

- A coordinated effort to populate all pediatric and general / family physician's offices globally with quality eating disorder literature including available resources both local and electronic
- An awareness campaign to ensure that all pediatric doctors and general / family physicians understand that it is NEVER okay for a child within a normal weight range to lose weight, even if its just a few pounds, and that any weight loss should be investigated immediately
- A better understanding of how body dysmorphia works.  Is it possible that the beginnings stages of dysmorphia "trigger" the growth of AN, or does dysmorphia always occur after the onset of AN?   I often wished I could put a pair of special eyeglasses on my d when she was at her worst so she could see her true self vs. the AN image her mind played for her.  Maybe some super-smart scientist will invent these eyeglasses some day! 
- I'd want to study the impact of a diet rich in fats on the re-wiring of the brain in a recovering anorexic.  Do high amounts of fats early in the re-feeding process have an impact on recovery speed or the severity/duration of co-morbids?  It would be great to see some specific evidence either proving/disproving potential correlations.



__________________

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
AUSSIEedfamily

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Reply with quote  #5 
Dear wewillpersevere,

There is a heap of work being done by many ED researchers on the neurobiological basis of anorexia.

One of the people doing amazing work in this is Cynthia Bulik & her team at the University of North Carolina (UNC) ( https://www.med.unc.edu/psych/eatingdisorders/about-the-program/our-people-folder/cynthia-m-bulik-phd ). Cynthia & her team also work with other people & organisations on this topic. There is a real possibility of Barry Marshall, a Nobel Laureate for his work on Helicobacter being the cause of stomach ulcers ( http://www.helicobacter.com/ ) working with Cynthia & her team to find out more about the gut & brain relationship in eating disorders.

You might consider getting in touch with Cynthia

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wewillpersevere

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Reply with quote  #6 
Thank you so much everybody for your input!! I will take all you've said into account and let you know how this story unravels...

AUSSIEedfamily, thanks so much for the great info. I'll definitely look into this!!
IrishUp

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Reply with quote  #7 
IMO/IME the problems with ED treatment are as much or more in the lack of treatment evolution, as they are in the basic fund of knowledge! [Disclosure - IRL, I am a clinical researcher who has worked a substantial amount in the area of Barriers to Adopting Evidence Based Medicine]

As AUSSIE points out, there is a growing body of good information, and more clinicians who are clued in. However, the actual USE of evidence based medical treatment in EDs remains disgracefully lacking. Work is ongoing to identify why there is a disconnect between what has been shown to be effective in ED diagnosis treatment compared to what is actually offered to patients and families. I really believe that work focused on improving the adoption of EBM in ED assessment and treatment would improve both patient access difficulties as well as patient outcomes.

This is a recognized need, that has yet to have enough resources devoted to it. 

http://www.annualreviews.org/doi/abs/10.1146/annurev-clinpsy-050212-185629
http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2850.2012.01276.x/abstract?userIsAuthenticated=false&deniedAccessCustomisedMessage=
http://www3.nd.edu/~ghaeffel/Resistance.pdf
https://www.researchgate.net/profile/Kristin_Von_Ranson2/publication/232609049_Psychotherapies_provided_for_eating_disorders_by_community_clinicians_Infrequent_use_of_evidence-based_treatment/links/0912f50896a97a99c8000000.pdf

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IrishUp
cct4

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Reply with quote  #8 
Hi there,

I'm a Psychiatric Nurse and our  family has been struggling with our adult (21) daughter for 3 years now.  If there is ONE thing to focus on, it is access to EVIDENCE based care services! There are so many services out there that are well intentioned but have not caught up with the science.  I heard a quote that it takes 17 years to get from clinical trial to your doctors offices, far to long for all our families that are suffering!!  Also if I was gong back, I would be looking into the nutritional component, not just re-feeding, but WHAT we are re-feeding with. We've come from a place of not letting our loved ones with ED starve (many years ago we thought they had to WANT to make changes )  I've become convinced about the work of Dr. Kelly Brogan and Dr. James Greenblatt , about the correlation between gut dysbiosis , and micronutrient support for people with ANY mental health issue.  I'm also convinced the in ED, due to the nature or starving , or binging and purging, that our loved ones have "upset the balance" more significantly and that critical attention to the individuals gut and inflammations with a focus on WHAT we refeed them is going to be the next massive leap in treatments. What a gift that we will have one more person who GETS it in the professional treatment community.  Wishing you good luck in this next venture for you.

Kind regards.
wewillpersevere

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Posts: 24
Reply with quote  #9 
Wow!! So much valuable information in this community, please keep it coming!! Cct4, I'm really happy you mentioned understanding gut dysbiosis and micronutrient support. This was actually the first 'alternative' information I came across when first trying to understand this disease.

Thank you so much to everybody, all your input has been super eye-opening ❤️❤️❤️
deenl

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Posts: 989
Reply with quote  #10 
Hi wewillpersevere,

I also think it is very important to look into supporting the other eating disorders. The patients may not look like they are on death's door but they also have reasonable similar chances of dying and are just as miserable as people with anorexia.

I wish you lots of luck and satisfaction with your new course.

Warm wishes,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
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