F.E.A.S.T Facebook Discussion Of The Century!

Taken from This thread on the F.E.A.S.T facebook group. 

Edited for privacy of posters – I have left in Laura Collins and Carrie Arnold as they are well known in the ED world, and Tetyana’s first name because of her amazing contribution.

*****Edited 9th September 2012*****

Tetyana has now published a post -

Genetics: Friend or Foe in Ending Eating Disorder Stigma?

This is just as brilliant as I’ve found all her posts – and probably a far more condensed version of anything explained here. I’ll keep this discussion up though, it’s something I think important to preserve.

******

Laura Collins

Jen asked a great question on another thread that I thought I’d open up here. ” I’d love to hear more Laura, if you would, about how someone can fully recover from an eating disorder if it’s more along the lines of a mental illness like, schizophrenia (sp?). To me, it would seem that if EDs are pre-determined by our genes, then we would need to “manage” them throughout our lives? I’m genuinely curious. Thanks so much!

This is a really important point. When people hear someone say that eating disorders involve something wrong with the brain people often wonder if that means the issue is permanent and worry that the only way to fix a brain problem is with drugs. I want to say emphatically that brains CAN be healed and NOT just through drugs.

In the case of an eating disorder we’re lucky: food is medicine as is learning. The first task is to restore normal nourishment which, almost by definition, is awry (this includes bulimia and BED). A brain that is not getting the amount and range of nourishment it needs, even with only a small deficit, is going to behave poorly. For those with certain predisposition the brain responds to malnourishment in consistently pathological ways. Second, behavior and thinking is medicine, too: by changing behaviors around food and strengthening certain ways of thinking the brain learns new ways to respond to life. Psychotherapy is medicine, as is a safe and caring environment, and healthy messages and modeling.

Eating disorders are fully treatable, to full remission – we know this – but the predisposition doesn’t necessarily go away. People with an ED predisposition and history can’t diet, overexercise, live in unrelenting stress, or afford not to get treatment for co-morbid anxiety, depression, substance abuse, PTSD, or other issues. They also should not be expected to thrive in environments that don’t support a healthy, balanced lifestyle. But treatable, YES, and fully, YES!· Friday, August 24 at 9:19pm

• SS  Thank goodness.

  Friday, August 24 at 9:22pm via mobile · Like · 2Reply
• KWD  another great example is Kaitlyn Dinneh Wozniak – she is fully recovered and has a blog Beauty to the Core. Nothing but inspirational……….

  Friday, August 24 at 9:24pm · Like · 2Reply
• FS  Thank you, because I often wonder this myself. In my experience the ED has dogged me since as young as I can remember, but nutritionally I was fine for years. I’ve often wondered what came first, the anorexia and the thoughts and behaviours? Or the nutritional problems? Did they trigger the anorexic part of me off (like the men in the Minnesota Semi Starvation Study became so disordered simply by being starved?) Or did the anorexia trigger off the nutritional factors which in turn, cemented the anorexia into me? Sorry if that makes no sense.
  I’ve also wondered if it’s possible to recover because it’s a part of me that I’m sure I was born with – it just IS. As much as I wish it wasn’t. It’s that strong and it’s been there that long. BUT I have friends who I have known from when they were extremely sick, to now, they are completely utterly recovered in every way – free of ED in every way – and I know it’s possible. It feels impossible to me, but if they can, I can, we all can.
  I do also believe you can create new neural pathways in the brain (or something) that just practicing changing my thinking, changing my habits, the more I do that, the more I MAKE the new changes happen for myself.

  Friday, August 24 at 9:30pm · Like · 3Reply
• KC  Neuroplasticity is awesome. That is all

  Friday, August 24 at 9:32pm · Unlike · 5Reply
• Laura Collins ‎FS you CAN.

  Friday, August 24 at 9:53pm · Unlike · 1Reply
• Tetyana  The neuroscientist and geneticist
  in me cringes at this discussion. (ugh using iPod to type sucks)

  Friday, August 24 at 10:21pm via mobile · Edited · LikeReply
• Laura Collins Have at it, Tetyana: speak!

  Friday, August 24 at 10:20pm · LikeReply

• MP  I’ll be completely honest. If someone had told me when I started recovery that this was entirely a brain issue, I would have given up on the spot. Because I would have heard “This is part of how you were born, and therefore there is a limit to how much you can do about it.”

  The MOST IMPORTANT lesson I learned in recovery is that the eating disorder is not part of who I am. It is entirely seperate from me as a person, and therefore something I have been able to get rid of. I know people who are fully recovered, who have been through major traumas AFTER recovery and not relapsed. They do not consider themselves to be “in remission.” They are Recovered.

  Friday, August 24 at 10:39pm · Edited · Unlike · 1Reply

• Tetyana  Yeah, I’ve starting writing a post on this (“genetics, eating disorders and stigma”), which kind of explores whether framing EDs as a largely genetic issue, is helpful or not. I’m not surprised at your response, Missie, because I think it is common. For me, framing it as something else, outside of who I am, I find ridiculously annoying because it is just not true, it is part of me in the sense that it is my brain. This is partly why I don’t think I could tolerate treatment very well, non-scientific claims or pseudo-scientific claims irritate me like nothing else. (I did one lesson of yoga, and the woman kept going “breathe to the back of your lungs”, and I couldn’t take it. GAS SPREADS EQUALLY IN ALL DIRECTIONS. If I breathe in, it goes everywhere! She is like “most people breathe just through the front of their lungs”… yeah, I couldn’t take it. I felt more irritated and annoyed after the supposedly relaxing yoga-session. I came back once more, and it was even worse.)

  I think that the problem is in part due to just a misunderstanding or ignorance of science. That’s not really anyone’s fault per se, science education and science policy, in part. Certainly not the individual – it is not like I think everyone should do a neuroscience or genetics degree. But some common concepts, like neuroplasticity or heritability, get thrown around a lot without individuals really understanding what they mean. And I think that’s true for every field, science or not. I’ll write up a response to what I think about this in a second, I just woke up.

  Friday, August 24 at 10:42pm · Edited · Unlike · 3Reply
• Laura Collins ‎MP, I agree with you. I don’t see an eating disorder as part of the person I see it as a pathological process that hijacks the person and can be gotten rid of. That’s what I MEAN by a brain problem.

  Friday, August 24 at 10:43pm · Unlike · 4Reply
• Carrie Arnold ‎MP, I think your experience goes to show just how badly scientists have educated people on what “brain issue” means. I can separate the ED thoughts from Carrie thoughts, and I have learned (like you) that the ED is NOT AT ALL who I am. Just my depression or OCD aren’t who I am, either. They’re a condition that I have/had (verb tense depends on diagnosis), but I have also learned how to treat. EDs are influenced by genes but they are also influenced by environment and what I do and how I take care of myself. So EDs are biological (in that everything that affects the human body is biological), but that doesn’t mean that there aren’t lots of things I can do to keep myself healthy.

  Friday, August 24 at 10:44pm · Unlike · 4Reply
• Carrie Arnold Clearly we all posted at the same time.

  Friday, August 24 at 10:45pm · Like · 2Reply
• RNB thanks for posting this Laura–my daughter has been told twice by therapist that it isn’t treatable. I can’t wait to show her this. (she has since stated that the therapist need her own help but she still goes back to that statement–untreatable)

  Friday, August 24 at 10:53pm · Unlike · 3Reply

• MP ‎” For me, framing it as something else, outside of who I am, I find ridiculously annoying because it is just not true, it is part of me in the sense that it is my brain.”

  Tetyana, that’s why different people need different approaches. There are plenty of patients (and therapists) who work better in one way and others who go at it the other way. That is why I think it’s extremely important for a patient to find a therapist who works well with them. That doesn’t mean the T will never challenge them and ask them to also consider the other perspective – they probably should. But you have to wait untill the patient is in the right place to deal with that discussion.

  Carrie, I do understand and actually now agree with you. I’m just saying that when I started recovery I would not have been able to make any seperation between the two. Not because I was malnourished – my eating disorder started as binging long before I tried to diet – but because I was so committed to seeing myself as an Eating Disordered Person. That was part of my identity, and hearing “you were born this way” would have confirmed it and kept me from making any attempt at changing things.

  Friday, August 24 at 10:54pm · LikeReply
• MBR i feel sure that the way this disease impacted our daughter and consequently our whole family, we needed to hear that this is a disorder of the brain. the ferocity of the ED needed to be met with an understanding of this genetic brain disorder. i did feel hopeless at times that my daughter would not be well ever again. food was the medicine she needed for 16 months and then food and intensive support and struggle and hand holding and faith in recovery was necessary for months and possibly years to come. this is more intensive than I ever imagined an ED to be. the public is not aware of the devastating nature of ED. I wish my family never had this tragedy but we were thrust into this world and maybe we an help each other have faith in recovery with your family. Hopefully we will look back years from now watching grandbabies play and have the the research and understanding of ED and accessible treatment options and we can breathe easier.

  Friday, August 24 at 10:54pm · Unlike · 2Reply
• MP My main point is to be careful with how you word things and who may be listening. This is a closed group, so it’s hopefully a safe place for this discussion. But for all of us doing work in the ED community, please keep in mind that some …people aren’t ready for this.
  Simple statement like “Your brain is born this way” or “parents don’t cause eating disorders” are true, but REQUIRE a larger explanation or they can cause a lot of harm.

  Friday, August 24 at 11:00pm · Edited · LikeReply
• Tetyana ‎(And in the meantime, since I’m not that hopeful science literacy will improve, then fine, yes, sure, frame it how the individual needs to be framed to recover, because recovery is more important that correct scientific understanding of biological concepts.)

  Friday, August 24 at 11:06pm · Unlike · 4Reply
• Tetyana MP, I agree that people need different approaches, etc.. but for me, it is an issue of science education and science literacy. Because a lot of these differences stem from incorrect or incomplete understanding of genetics, neuroscience and biology in general.

  Friday, August 24 at 11:06pm · Like · 1Reply

• Laura Collins I wouldn’t consider this a closed group – anyone can join. It is F.E.A.S.T. sponsored and parent-oriented so of course the topics and the emphasis are consistent with our principles.http://www.feast-ed.org/FEAST/OurPrinciples.aspx

  It is part of our mission to say, often and as loud as we can, that eating disorders are treatable, brain-based, and that parents don’t cause them. I know these things jar people at first but I feel they are ESSENTIAL for parents to hear and discuss openly.

  But we don’t tell parents what treatment to pursue or that there is only one way to proceed. We think parents need to do their own homework and take their job of seeking and supporting treatment very seriously – and individually.

  

  F.E.A.S.T. Our Principles

  www.feast-ed.org

  The founding principles of F.E.A.S.T. are that anorexia, bulimia, and EDNOS arebiologically based mental illness and fully treatable with a combination of nutritional, medical, and therapeutic supports. We believe parents are uniquely able to assist with finding and supporting evidence-based treatm…

  Friday, August 24 at 11:07pm · Like · 1Reply
• MP I know anyone can join. I just mean that you still need to join to read posts – that’s what a closed group on FB means. Open groups don’t require membership to read posts.

  Friday, August 24 at 11:09pm · LikeReply
• Laura Collins Hmm. I actually didn’t think this page was closed… My bad. I thought it was only closed for posting, not viewing. Must review…

  Friday, August 24 at 11:11pm · LikeReply
• MP ‎Tetyana, I’m the sort of person who wants to know the “why” behind stuff. Drove my dad crazy trying to help me with math homework because he kept telling me to use the formula and I wanted to know how the formula was derived before I could learn to use it

  Friday, August 24 at 11:13pm · Like · 1Reply
• Tetyana I’ll type up something in response to all of this later today, just to make sure it is thorough and well-written.

  Friday, August 24 at 11:15pm · LikeReply

• KWD  http://beautytothecore.com/ read …. I think you’ll like

  

  Beauty to the Core

  beautytothecore.com

  Wellness. Self Esteem. Fitness. Nutrition. Beauty. Confidence. YOU.

  Friday, August 24 at 11:23pm · Like · 2Reply
• CB ‎MP I think we have to be careful on so many levels, when using words – like cause, trigger, trauma – all well overused and under defined. xx

  Friday, August 24 at 11:54pm · Unlike · 3Reply
• LE I think so much of the “older” professional community that still treats ED is a huge part of the problem. But, the internet information highway has given those still unable to receive the kind of current effective treatments evolving in the field an opportunity to find hope and help beyond whats available locally. This is an illness that requires a great deal of long term support to build a strong healthy survivor. .And we see survivors living more and more successful healthy lives.

  Friday, August 24 at 11:57pm · Unlike · 3Reply
• CS My son suffered and fought “the beast” for three years. I do believe deep in my core that this is mental illness, in which he will have to carry with him forever. He admits it is still there, and does sometimes come out to test him, but he now sees how very ill he was, how close to death he was at his lowest point and now that he is nourished, physically and mentally, he can finally overcome the horrific thoughts. He is 17yrs old now, he eats a healthy diet, over 3000 calories per day, eating up to 6 to 8 meals per day and his exercise is now done in moderation. He found his balance and is once again, happy, eating and he is back to living! I cannot be more proud of him……

  Saturday, August 25 at 12:35am · Unlike · 7Reply
• JL Thanks Laura Collins for your thoughtful response. This is a very interesting perspective. I will keep reading, listening… ♥

  Saturday, August 25 at 3:15am · Like · 1Reply
• CZ Like Tetyana, I’m pedantic (that’s an asset, not an insult, btw…) with regard to the meaning of words and terminology – and how these are used. That is why I so dislike the suggestion that EDs are ‘heritable brain disorders’. Everything about that phrase spells ‘inaccuracy’ and ‘non-evidence-based’ to me. I prefer the term ‘biologically based’, because there IS an evidence base to support that term. The Minnesota Starvation Experiment is so often quoted to apparently explain the symptoms of EDs, but while it explains well the obsessionality that can develop with self-starvation (especially around food and eating) and the onset of bulimia during re-feeding, it doesn’t explain why many people with restricting AN are unwilling to accept weight gain, or a change of eating behaviour. None of the men who participated in that experiment were unwilling to undergo re-feeding. There must be something else within restricting AN that is also operating to elicit that phobic response to weight gain, a higher energy consumption and eating more, or all such factors.

  Saturday, August 25 at 3:40am · Edited · Unlike · 4Reply
• CD My daughter is in her fourth year of recovery. She says she never wants to go back to her ED. She also says she still hears that evil voice from time to time and just the other day she told me that she probably uses the tools she learned in treatment every day. This week she started her dream job as a second grade teacher at her first choice of schools. (Big celebration at our house!!) Recovery is possible. And you will always need to keep it in front of you. That’s why I really liked you last paragraph, Laura Collins.

  Saturday, August 25 at 3:35am · Unlike · 4Reply
• CV CD, that’s wonderful about your daughter. What type of treatment/therapy did she receive? What was most useful?

  Saturday, August 25 at 3:38am · LikeReply

• Tetyana 

  I am coming late into the discussion, sorry, trying but failing to do my work. All of the discussion here is motivating me to write something with regards to genetics and the issue of missing heritability as it has been called and EDs. I think what sometimes gets forgotten in these discussions is that genes code for proteins, not complex traits. These proteins can influence the way our brain develops (like, how many connections each neuron makes on average, for example), how easy it is to excite neurons, how our brains respond to glucose and metabolize it, all of these types of things. NOT complex traits. So, while it is well known and accepted that genes play an important role, the precise genes that are important – or rather alleles (versions of a gene) – are virtually unknown. There are some theories, and correlations, but overall, the science is weak. Because, each allele contributes a teeeny-tiny bit to a trait. Moreover, imagine thousands of these genes, playing teeny-tiny roles, but, some may, effectively, cancel each other out – when it comes to behaviour for example – so, teasing out the role of each one is difficult. Crazy difficult. Very often – too often – the statistics in these studies, like the ones trying to find a gene that is associated with a trait or brain imaging studies – are crap. They many not adequately take into account the vast amount of data being analyzed, for example, or they may not have enough samples to really identify a true effect, even if one exists. DNA is not just genes that make proteins, though, there are lots of other changes that can effect behaviour, so some scientists might be looking in the wrong area, so-to-speak.

  There are two other important things I want to mention. It is not that these the additive effect of these genes leads to anorexia or bulimia. Remember, these genes are making proteins, and a vast number of our genes (and the reason we share so many with even a banana) is because they make proteins we need to regulate how many cells we make, when we make them, when to stop making them, how to deal with cell-junk, how to metabolize glucose and make it into energy a cell can use, etc.. the behaviour that we see is due to complex interactions of genes and environment (environment is literally everything not coded in the genome or passed down epigenetically). So, a particular behaviour – like perfectionism – can arise from lots of different ways, but probably converges on some similar end result, biologically speaking – similar activity patterns in the brain for example, or similar neuronal responses to something like serotonin.
  So, that means that even if you have a “predisposition” to develop AN – whatever that means, could be that in response to stress, you find restricting anxiolytic, for example – you won’t get it unless you come across that fact. Maybe you are predisposed to alcoholism just due to how your body metabolizes alcohol, but if you never, in your life, drink alcohol, you won’t know it! So, these things don’t arise out of nowhere. You can’t wake up one day and just get anorexia, you might wake up one day and decide to go on a diet, or you might feel like eating makes you feel gross, and that may lead to anorexia, eventually, but you don’t wake up with anorexia.Furthermore, I think the idea that everyone call recover fully is not completely legitimate, it depends on too many factors. But, given that eating disorders are complex behavioural traits, influenced by a lot of genes and environmental factors, some might have weaker genetic predisposition and/or an amazing support system, or get “caught” early, before symptoms become habitual, and recover. But, for some, the genetic predisposition might be very, very strong. Again, it is not a predisposition to AN or BN, it is a predisposition to traits that, in that individual, may play themselves out as an eating disorder. But, just as for some, genetics might not play a huge role and/or they might have extrinsic motivational factors, others might not. The way they deal with the world, themselves, stress, etc.. might put them at a disadvantage to recover, particularly if they also don’t have a support system, or a means of recovery, or have been sick for a long time. If they’ve been sick for a long time, or have their genetic “make-up” rigged to their disadvantage, recovery might be incredibly difficult and the most they may achieve is partial remission, or they might have to always fight the desire to restrict or binge and purge. They might be symptom free for their life, but the desire might always be there, for example. That’s just the natural result of have a polygenetic, multi-factor behavioural trait.
  Of course, it is not useful, in recovery, to think of yourself as being that person for whom it is impossible. It gets into the argument of free-will and determinism. Maybe we don’t have any, but we have to go on living under the assumption that we all have free-will and can change our immediate future, otherwise we will all just probably fall into depression.
  Traits that may predispose to develop AN or BN are not all negative, either, it is just in a certain environment, or too many of predisposing traits, will not be so advantageous. I bet you can diagnose a lot of academics with Asperger’s, get all of these academic in the shack, some of them will have kids with Autism, and then that’s not so advantageous – does that kind of make sense?
  I’ll blog about these things in the future at some point. This is kind of rough, I just wrote it and didn’t edit.

  Saturday, August 25 at 7:07am · Unlike · 6Reply
• Tetyana  err sorry for effect/affect screw-ups and all the other mistakes.

  Saturday, August 25 at 7:09am · LikeReply
• CZ Awesome, Tetyana. Just awesome

  Saturday, August 25 at 7:24am via mobile · LikeReply

• CZ

  For a long time I have been arguing that traits that may predispose to EDs are not negative, unless the person is in an environment, or has life experiences that ‘encourage’ the development of behaviours that may morph into an ED. The analogy with ASD is a good one – and indeed there is evidence to suggest that EDs (especially AN) and autism can run in families. It is also interesting that the prevalence of autism is higher in silicon valley. This has led some researchers to suggest that various autistic traits can lead to success in IT/computer programming (etc.); yet when two people with these traits produce offspring, these offspring may bd mire vulnerable to autism itself.

  Saturday, August 25 at 7:33am via mobile · Unlike · 2Reply
• CZ ‎*be more* – sorry, it’s my phone!

  Saturday, August 25 at 7:33am via mobile · LikeReply
• AT ‎Tetyana  - you’ve just said (but better!) what I’ve been trying to say to parents on various blogs for years! Thank you

  Saturday, August 25 at 7:59am · LikeReply

• Tetyana

  Yeah, I completely agree regarding ASD, I think it is true for EDs as well. I think the link between ASD and restricting-AN that doesn’t progress to AN-BP/BN. It just woudn’t make too much sense for it to be 100% negative, biologically, it makes little sense. This also raises a very important point about increases in prevalnce of diseases. ASD or EDs, or whatever the hell else, could be increases or decreasing (err, changing) due to, well, mating/breeding patterns. Say, in silicon valley, autistic traits are selected for, because of their benefit in the workplace, and then of course, with more freedom to marry who you want, these people marry, have kids, and as you said, higher change of the kid having autism, or more autistic traits. But same, of course, is true for EDs. If there is selecive pressure for traits like being detail-oriented, or anxious enough that you get your work done as opposed to procrastinating, then, naturally, that predisposes offspring to behavioural patterns that, typically under stress, are a consequence of otherwise positive traits.

  Saturday, August 25 at 8:06am · Unlike · 2Reply
• CW ‎Tetyana, I’m curious as to why a complex trait like AN would be unlikely to be genetic whereas complex personality traits such as perfectionism is? You are stating that people who are detail-oriented would inherit those traits from their parents.

  Saturday, August 25 at 3:00pm · LikeReply
• CW Why isn’t AN a genetic trait? To me, Dr. Kaye’s theory of serotonin receptor proliferation makes sense. It makes sense with my daughter’s personality (NOT anxious, perfectionistic, functional family, no trauma, blah blah blah) and our family history of extreme food sensitivities. So why isn’t AN, at least sometimes, purely a response in one part of the brain to a restriction in nutrition?

  Saturday, August 25 at 3:03pm · LikeReply
• CB ‎CW - I am no scientist but I wonder if your family history of extreme food sensitivity and epigenetics may play a part? xx
  Saturday, August 25 at 3:09pm · LikeReply
• CW I do think so. I know we shouldn’t simplify these illnesses, and I’m not saying that this is true for everyone, but for my girl, it seemed like a simple illness—unfortunately affecting an extremely complex organ.

  Saturday, August 25 at 3:11pm · Like · 1Reply

• CB

  I am going to try out one of my way out theories here because I am pretty sure Tetyana and CZ are still asleep. For you CW, I wonder if epigenetics had planted in your d’s subconscious a fear of food, due to extreme food sensitivity. This “fear” got turned on when she did the 24 hour famine thing. Even though she was able to reefed herself the “fear” remained and transferred to YOU as YOU were the one who made her eat the dreaded “food” to begin with…..(How unscientific is that?). xx

  Saturday, August 25 at 3:25pm · Like · 1Reply

• CZ ‎CW, people can develop an ED as a consequence of extreme food sensitivity, or in relation to some negative experience that they associate with eating. Here is an example from my own past:

  I was diagnosed with restricting AN at age 12

  . However, right from being a small child I was very ‘picky’ and would refuse to eat many foods because I found their taste or texture intolerable. At age 5 years, shortly after I started school, I developed a severe eating phobia and was unable to eat anything at all while at school. I then became fearful of white foods; especially liquid white foods like milk, yoghurt etc. I was convinced that they would make me vomit. I was then convinced that ANY food would cause me to vomit. Somehow I grew out of it, yet I never really felt hungry when I didn’t eat. The fear of eating made me feel nauseated. I hated any person who made me eat; but people who didn’t make me eat were ‘nice people’.

  Saturday, August 25 at 4:30pm · LikeReply

• CZ

  The onset of AN was rather different. I had a few years of eating rather more and growing normally, but was then bullied badly at school and experienced trauma. I didn’t tell my parents about any of this, but became very self critical and almost psychotically anxious. I was a very sporty kid and was already involved in training for various sports and just happened to find that exercise reduced my anxiety, made me feel calm and stopped the whirlwind of thoughts in my head. I did more and more exercise – and in a very rigid manner, which precipitated weight loss.

  By coincidence, at the same time, my parents were following a weight loss diet and pinned up calorie charts on the wall in the kitchen. Being a somewhat nerdy kid, I liked these charts and decided to follow my parents’ diet; though NOT because I wanted to lose weight or become thinner. I liked the sense of ‘control’ and ‘order’ in counting calories and planning all the exercise I would do. It made me feel ‘in control’ [yes, I know FEAST hate the use of the word 'control' in relation to EDS, but it is a word I used as a child with AN that no-one put into my mind....]. My behaviours then became rigid routines and I feared changing these routines. I lost a lot of weight and was actually frightened by how thin I became. But when I was taken to see a paediatrician I was very reluctant to change my behaviours. What I was scared of was the change itself; not the idea that I would get bigger. The number on the scales was merely a gauge of the extent of ‘control’ I felt I had over my anxiety.

  Even though my parents were on a diet at the time I started with AN, I do not blame them whatsoever for my AN. Even so, if you have an anxious, geeky kid, it’s probably not a good idea to stick food charts on the kitchen wall…. But had my parents not done this, I would probably have come across calorie charts elsewhere.

  Saturday, August 25 at 4:40pm · Unlike · 2Reply

• Tetyana  

  CW: that’s a very good question. I think I need to keep track of these or save them somewhere so I can maybe make some FAQ section on the blog. It is difficult for me to explain some of these concepts in a way that’s both correct

   (because 1. I don’t do human/mammalian research and 2. It is hard to know what people know/don’t know) and yet understandable.

  So, I’ll try to tackle your questions, but you’ve kind of got a whole lot of questions concealed in one.

  “I’m curious as to why a complex trait like AN would be unlikely to be genetic whereas complex personality traits such as perfectionism is?”

  I think there is some misunderstanding here. I’m going to try to explain this in a hypothetical/theoretical experiment: Imagine a bar graph, and on the x axis are lots of various personality and temperamental traits, thousands of little nodes for all sorts of various things, even more basic than “perfectionism”, but all the various components of what makes up perfectionism (again, this is a thought experiment, we don’t actually need to know what those components are). The idea is, imagine that all aspects of our behaviour are influenced by hundreds of genes, and not just genes, but the way these genes are regulated, components on the DNA that aren’t protein-coding (popular press calls it “junk-DNA” but it is absolutely not junk, it just doesn’t make proteins), epigenetic factors, etc.. all of these, contribute teeny-tiny, minute components of what in the end, makes us US.

  Now, perfectionism might arise from a portion of those components reaching some threshold level, it is not a gene that leads to perfectionism, but maybe 100’s of them, interacting in a certain way or ways, results in the perfectionistic trait. So, there’s a genetic component here. AN, on the other hand, is much more complex than perfectionism, it requires 1000’s (hypothetical here, I’m just trying to illustrate my point) of various components to reach some threshold level, or interact in a way to predispose an individual to AN. Think of it as all the common things normally attributed to AN. But, note, that not all perfectionists have AN and not all AN individuals are perfectionistic. Right? Of course. Because, it is much more complex, the AN behaviour/state is made up of a ton more components, which may or may not include perfectionism.

  Think of it as a threshold thing, maybe perfectionism increases your chance of AN by like 1%, and something else by 2%, and some environmental trigger by 1.102%, whatever. SO, it is genetic predisposition, BUT, because it is comprised of so many more factors, because the behaviour is so much more complex than just perfectionism, there is no specific group, or set of factors you are likely to be able to point to as “we need these genes to be turned on in such and such manner for AN to develop” as you may be able to do for a simpler trait, like, eye-color.
  To frame it in another way, think from an evolutionary perspective. We can see how perfectionism, or detail-oriented personalities might increases chances of survival or be “selected-for” in the population. But, AN, unlikely. But, AN is comprised of lots of those factors that otherwise ARE, or COULD BE, selected for in a population (think back to the ASD example, some autistic traits are favourable and even thrive in certain places, but too many of them leads to a disability). Same could be for AN, there’s no particular set of traits you may need for AN, although there might be some that are much more commonly seen in AN just because they may increase the risk of developing AN by a lot more. That’s what I’m trying to say: perfectionism may be a big risk factor to AN, but, it is not a complete negative trait, it can be really positive, but too much of it, + too much of other factors + environment AN. AN itself isn’t “selected-for”, evolutionarily, as it doesn’t bring much benefit to survival not does it increase the chance of having offspring, but the components that make up AN (thousands if not more), can be, in isolation, beneficial. It is a mix of otherwise positive traits that may have more discrete genetic components, that end up leading to AN (usually in instances of stress, or trauma, or whatever, but not necessarily).

  Ugh, I’m very wordy, I’m just really not doing a good job explaining myself, it is kind of hard for me and I don’t have that much practice doing this, so hopefully it makes a little bit of sense.

  With regard to Kaye’s work, it actually supports what I’m saying. It is not serotonin receptor proliferation (I don’t know if he himself uses a term proliferation, but I’ve never heard of that term used in talking about receptor expression), but anyway, point here is as follows: Changes in the serotonergic system cannot just influence one trait, like our response to food intake and thus tryptophan (I wrote two blog posts about this very issue, the first one being “Benefits of Starving and Why You Don’t Have a Chemical Imbalance”). This is why when we take a medicine, or SSRI or whatever, a lot of us experience lots of side-effects: because, our brains and biology in general, likes to reuse the same things for different purposes. Changes in the serotonin system cannot just impact one thing in isolation. And these changes do seem to coincide or correlate with behavioural traits like harm reduction, for example. Now, this goes back to my example above. It may be that a large portion of patients with AN have high activity in serotonergic system, and most of those may exhibit classic traits associated with that, but, not necessarily all, because others might have other traits that counteract that and so you don’t see “perfectionism” on a behavioural level, even though response to food may be similar, or to stress, may be similar. Serotonin plays a role in, oh man, almost everything. And so I think going based on behaviour (I wasn’t anxious or perfectionistic either before AN) is not a good marker: it is retrospective, anecdotal, not scientific. I don’t want to discount your experiences, and as I said, I don’t recall being anxious or perfectionistic either, BUT, the phenotype (ie, behaviour like perfectionism) may be correlated with particular levels in the serotonergic system, but it is expression (what we remember, see) is more nuanced and depends on many more things. Kind of make sense?

  Kaye’s work supports what I’m saying: changes in the serotonergic system affect a shitton of things, that have nothing to do with anorexia nervosa, but combined with other factors, AND environment, can lead to it. Whereas high serotonin might directly lead to particular traits, much much much more strongly than something that has many more components, like AN.

  Oh man, this explanation sucked, sorry. Hopefully something is clearer and not more confusing. I do invertebrate neuroscience people, I am not used to thinking so much about human brains.

  Sunday, August 26 at 1:30am · Edited · Like · 3Reply

• Tetyana Relevant posts that may, hopefully, clear some things up: http://www.scienceofeds.org/2012/06/12/anorexic-brain-neurocircuits-behaviour/ and http://www.scienceofeds.org/2012/08/13/serotonin-function-in-bulimia-nervosa-brain-circuits-behaviour/

  

  The Benefits of Starving and Why You Don’t Have a “Chemical Imbalance” | Science of Eating Disorders

  www.scienceofeds.org

  Why do anorexics starve themselves? How can they do it when others fail? Do they have a chemical imbalance? What is going on in the brains of anorexics?

  Sunday, August 26 at 1:25am · Like · 1Reply
• CB You did great Tetyana  - really well. I have now GOT IT. I have just googled shitton as well and laughed myself silly…..

  Sunday, August 26 at 1:30am · Like · 3Reply
• Tetyana I tend to swear a lot, it is true.

  Sunday, August 26 at 1:31am · Like · 2Reply
• CB Not swearing at all – perfectly acceptable descriptive word that I have never come across before and now have to think of a blog for it to go in…..

  Sunday, August 26 at 1:32am · Like · 1Reply
• LE Wow tatyiana that explanation rocked for me. I thought you expressed it clearly and as simply as one could thanks

  Sunday, August 26 at 1:43am via  · LikeReply
• Laura Collins I, too, appreciate and understand your explanation. I also agree with it – fits with what I know and understand. Great conversation.

  Sunday, August 26 at 1:56am · Like · 1Reply

• CW

  I like how you explain this, Tetyana, and I’m sure you know a shitton more than I do about neuroscience. What I take from Kaye’s research is that there is SOMETHING (and maybe it’s not in the serotonergic system at all–maybe it’s something else) that changes in the brains of people who have the genetic predisposition to AN when they restrict nutrition. Is there any proof that AN is so complex that it requires 1000′s of genes? Vs however many it takes to express, say a personality trait? Maybe I’m not getting this quite right, but it sounds as if you consider AN as a summation of a lot of bits–that it takes lots of grains of sand to create this sandhill and each grain of sand is complicated in its own right–and in this analogy, the grains of sand are perfectionism, anxiety, attention to detail, difficulty with set-shifting, etc–all the usual suspects. And to top it off, we may not even KNOW that the genetic predisposition for anxiety is there because it may not have been expressed (since not all genes are expressed), but it was there lurking and eventually contributing to AN.

  Sunday, August 26 at 2:31am · Like · 1Reply
• CW MY take on Kaye’s work is that something happens in the brain. I would bypass all the grains of sand about anxiety, perfectionism, etc and go straight to a biological explanation, because I don’t see this as a behavioral choice–I think there is something happening at a very basic level in the brain that makes it difficult to eat.

  Sunday, August 26 at 2:33am · Like · 1Reply

• CW

  When I say ‘food sensitivity’, I mean that AN *is* the food sensitivity that my d has. She hasn’t had a trauma with food nor was she a picky eater or have any sensory issues. I’m talking somewhere below an experiential level here. We have another food sensitivity in our family as I said earlier: a daughter who goes anaphylactic at the most minute amounts of dairy. Why does that happen? It’s a ridiculous situation, really. She has the slightest exposure to dairy and a whole cascade of symptoms erupts: coughing, sneezing, hives, stomach upset, tingling mouth, closing throat, etc. It doesn’t makes sense because a) dairy really isn’t a poison, there’s no need to get that rejecting of it, and b) even if the offending dairy is GONE, the symptoms continue until either the girl is dead or we intervene with some kind of chemical (Benadryl, Epi-Pen). There’s a logical evolutionary explanation for this: you want to avoid poisonous foods, and sometimes genetics is doing to miss and hit something that isn’t poisonous after all (oops). I don’t think that evolution is totally smart. Genes mutate and sometimes mutations are passed along even if they don’t make good sense.

  Sunday, August 26 at 2:47am · LikeReply

• CW

  What happens in my allergic daughter’s body is coming from somewhere–what tells her skin to break out in hives? The dairy product in question didn’t touch her face, so why did her skin react? Why does it affect her blood pressure? That’s a completely different system from the digestive–if digestion of dairy is the problem. The problem is in her brain, not in her gut. Her BRAIN gives the orders to all the body systems to go on high alert. Something happens in her brain that is not her choice–she is not even aware that she has had an exposure until symptoms show up.

  Sunday, August 26 at 2:52am · LikeReply

• CW

  That’s what I think is happening in my other daughter’s brain. When she loses weight, or when she gets sick and can’t eat, when she became a vegetarian for a while–all those things create a condition that her brain reacts to. And instead of hives and respiratory failure, something happens that makes it harder to eat. She either consciously or subconsciously (she’s done both) avoids eating, or eating as much, or eating certain things, and the more she restricts, the more her brain reacts. It’s a downward spiral. And like D#2′s anaphylaxis, it continues until the girl dies or we intervene with medication: FOOD.

  Sunday, August 26 at 2:57am · LikeReply

• CB

  Can I just butt in with the whole allergy thing? The skin is a whole different organ than can react with extreme sensitivity to just about anything – even water! Hives and anaphylaxis (or however you spell it) are a white blood cell reaction. I have every sympathy with your daughter, CW. It is very frightening. However the extreme reaction to something innocuous such as milk or water being a brain reaction – I havent thought of that. I know that I go into flight or fight whenever I get in the shower – so maybe it is…….

  Sunday, August 26 at 3:04am · LikeReply

• CW

  Maybe I’m applying Occam’s razor a bit too harshly. But sometimes I look at my daughter’s illness as a ‘pure’ case of AN, unclouded by trauma, dysfunction, or co-morbid conditions. I was aware of EDs before I had children and we raised our kids as best we could to prevent them. We’ve never dieted, we don’t have fashion magazines around, we don’t watch much TV. The girls didn’t even have Barbies. We talked about realistic bodies and body image. I was raised by a mom with terrible body image (BDD, I’m sure) and it made me feel so bad–so I never talked smack about my own body. The kids were never in day care and we ate dinner together every night. AN seemed to come out of the blue sky. But it didn’t. It was triggered by a 30-hour fast.

  Sunday, August 26 at 3:05am · LikeReply

• CW

  ‎CB, I’m just saying that it doesn’t make sense for my daughter’s skin–or heart!–or lungs!–to react to dairy. But it does, because the brain is the boss of that. My daughter doesn’t react with hives when she she sees a gallon of milk on the counter. It’s not a reaction like that. She reacts if the margarine used in the cookie at her friends’ house has whey in it. She isn’t aware–it’s not a flight or fight reaction. But man, girlfriend, I have so much sympathy for you. I think I would avoid showers for the rest of my life.

  Sunday, August 26 at 3:10am · LikeReply

• CB

  LOL CW I was REALLY brave last weekend. I got into the swimming pool, dunked myself and got out again but not until I had arranged a sun lounger in the shade, 2 litres of water to drink and my mobile phone primed. I was in there for about a minute and I survived! If not for the ERT training on the forum and the exhortation of the brilliant team at Addenbrookes to “pull my socks up and just try” I doubt I would ever have washed again. It doesn’t make sense. It really doesn’t and it is very frightening to watch. Lots of love, your good friend, Banana Hands. xx

  Sunday, August 26 at 3:14am · LikeReply
• CW xxxxx!

  Sunday, August 26 at 3:16am · LikeReply
• LE CB I googled it too! Love the geico analogy l

  Sunday, August 26 at 5:04am via mobile · LikeReply

• Tetyana

  Sometimes, in these conversations, I forget I’m an adult, I feel like a little kid. Anyway, CW, I think your grain of sand analogy makes sense. I think I wasn’t very clear, I do think that AN is a result of a lot of these grains of sand, but, they may not be obvious characteristics, like, anxiety, or perfectionism, nor does it have to be dieting or a focus on body image. It may be that alterations in the serotonergic system are enough and they only come about after restriction of food intake (it is a snow-balling effect, because your body adapts to less serotonin by making MORE receptors to sense the little serotonin is there, so when you eat, and thus intake more serotonin, because tryptophan in food is required to make serotonin in the brain, the effects are magnified (so eating may induce way more anxiety than before, and the only way out is to eat).

  Sunday, August 26 at 6:03am · Edited · Like · 2Reply
• Tetyana  Some other things, it is not a behavioural ‘choice’ in the sense of choosing chocolate or vanilla ice-cream. It is not, it is just the reaction that occurs because of the underlying biology. But the same is true for all those other traits: anxiety, perfectionism, etc.. All behaviour has a biological substrate.

  Sunday, August 26 at 5:27am · Like · 1Reply
• Tetyana  Also, evolution is neither smart nor dumb.

  Sunday, August 26 at 5:29am · Like · 2Reply

• Tetyana

  Last thing, I don’t think you need co-morbid conditions, or trauma, or anything like that, per se. Whatever triggers it, in my opinion, is whatever it is that leads the individual to “discover” that restricting is either anxiolytic, or eating food is anxiety-provoking. I do think that co-morbid conditions, and this has been shown in the literature, make recovery harder. That’s why I don’t think it is fair to say everyone can recovery 100% in the sense of being free from the mental aspects of the disorder. Regarding how many genes are involved, oh, I have no idea, I was throwing around random numbers just for scale.

  Sunday, August 26 at 5:32am · Like · 3Reply

• Tetyana

  There’s no great definition of what a gene is, and there are so many other things besides protein-coding regions of our DNA that can impact our behaviour and response to food, or stress. (Also, the gut is a pretty complicated organ that interacts a lot with our brains, and has it is own nervous system! The enteric nervous system.) There are so many problems in studying traits associated with AN, one, it is often done retrospectively, two, state versus trait: obviously starvation changes a lot of things, and three, scar-effects. (puberty changes a lot of things, also, the way our brains react to food-restriction differs between genders, which may be why women are more affected than men).

  Sunday, August 26 at 5:36am · Like · 3Reply
• CW  I agree with everything you are saying! I do think the co-morbids make recovery that much harder. Maybe the fact that the sufferers who DO have co-morbids, or whose latent morbidities surface after AN kicks in, tend to the ones who enter treatment over and over and thus form our vision of what a ‘person with anorexia’ is.

  Sunday, August 26 at 5:59am · Like · 1Reply

• CW

  Maybe the key is not in the brain after all, but in the enteric nervous system. Is anyone studying that? When my daughter was sick, she could not verbalize anything about her illness. In fact, when she was extremely ill and refeeding started, she couldn’t speak at all. She was very depressed, for sure, but more than that. Even now she can’t access memories about how/why/what she felt about any symptom and put them into words. I’ve assumed that there is some kind of non-connection between her feelings at the time and her linguistic area in her brain. If the haywire connection is not in her brain at all, that would make sense too. And it would make sense with anosognosia, wouldn’t it? She was being controlled by her gut, not by her head?

  Sunday, August 26 at 6:07am · LikeReply

• AT

  CW – I’ll pipe up here as someone also studying neuroscience, specifically psychiatry and PET imaging (albeit, I don’t know as much about genetics as Tetyana  - that is her field!) and say that there is research going on about the enteric nervous system and how this can influence behaviour – However, I think you might of misunderstood Tetyana’s post about a “brain” in the gut — there are definetly neurons in the gut and the gut definitely manufactures common neurotransmitters like serotonin and norepinephrine – However, these neurons and associated neurotransmitters are for different purposes than in the central nervous system – the gut needs to move things in a very coordinated manner, so much of the need for neurons in the gut is related to generating signals to “move” things along from stomach, small intestine, large intestine, etc and also to communicate with different areas of the digestive system so that gastric motility is coordinated between organs – so one cannot be “controlled by the gut” because these neurons and neurotransmitters do not work for that purpose

  That said, there is INTERACTION between the gut and the brain (sometimes called the gut-brain axis) and there is preliminary research (i.e. in animals) to suggest that activity in the gut might affect the brain. . We know that there are existing connections between the gut and the brain (i.e. vagus nerve) because communication is needed to regulate satiety, etc.

  Also, a quick blurb about your other daughter’s allergies – allergies are not controlled by the brain and the “coordinated allergic response” is not primary brain controlled but an immune reaction to the allergen. This general immune reaction (think different immune cells releasing different chemicals, causing various effects depending on the system they interact with) generates the symptoms of anaphlyactic shock, hives, etc

  Sunday, August 26 at 6:19am · Like · 1Reply
• CW Thanks, AT. I prolly need to know more about the allergic reaction and why it occurs. Since that daughter does not resist treatment for her symptoms–and she now recognizes them on her own and acts appropriately to save herself–we’ve never had to think so hard about it, even though her allergy is more quickly life-threatening than her sister’s.

  Sunday, August 26 at 6:25am · Like · 1Reply
• Tetyana I can just imagine what my boss’s reaction if she saw that someone wrote that genetics is my field. LOL. She’d disabuse ya’ll of that notion.

  Sunday, August 26 at 6:29am · Edited · Like · 1Reply
• LE Thank all you scientific minds for sharing real science. The education is priceless. We have a sharing here that is a very special mix if science experience, sheer bravery, determination and last but not least love!

  Sunday, August 26 at 6:53am via  · Like · 3Reply
• CZ I really enjoyed reading this thread too

  Sunday, August 26 at 7:27am via mobile · Like · 1Reply

• JHA

  This thread is extraordinary. I would love to see/hear this kind of discussion at NEDA, FEAST, etc., etc., etc. As we learned at the NEDA 2010 conference, this kind of developing discussion takes years and years to get “out there” to those who work to help people with ED get on the path to recovery. This kind of discussion gets away from blaming and on into understanding why it’s important to get to the root of each person’s illness – an individual approach. E.g. This morning’s (Sunday) NYT review discusses the possible link between autism and autoimmune disorders.

  Monday, August 27 at 2:42am · Like · 1Reply

• CV

  I suffered from anorexia. The onset was the result of a diet (not mine – my mother’s) spiraling out of control. Restriction turned into severe restriction and then starvation. My daughter suffers from anorexia. The onset was the result of depression and ‘forgetting to eat’ while at college. Restriction turned into severe restriction and then starvation. My 85 yeear old mom suffers from anorexia. Right now, she is restricting. Her onset was the result of my dad’s death/depression and isolation. She uses all the same excuses and deception for not eating as myself and my daughter did. She will eat when prompted by others and when she is happy to be with family. So what does this mean? At the end of the day, likely there is a generic component going on here AND no matter what else is involved and how it starts, anorexia (at least) is the result of malnutrition.

  Monday, August 27 at 4:55am · Like · 1Reply
• CD ‎CV, you asked about what kind of treatment/therapy my daughter had. (sorry this is a bit late, I was off-line all weekend). She was at Puente de Vida in San Diego (we live in Austin, TX) and they incorporated DBT (Dialectical Behavior Therapy, FBT (family based therapy), and IFS (Internal Family Systems).

  Tuesday, August 28 at 4:29am · Like · 1Reply
• CD just saw that you asked about what was most useful. She would say DBT for sure. She still uses the tools she learned.

  Tuesday, August 28 at 5:42am · LikeReply
• CVThank you, CD. That’s great that DBT was useful for your daughter and that she is willing to use the tools learned.

  Tuesday, August 28 at 11:39am · LikeReply
• KB ‎Laura Collins, You are RIGHT ON. All of the things you say in this carefully worded post are correct about the brain, ED, alcohol, drugs, support, a safe and caring environment. I have printed this and re-read it regularly. Thank you.

  Thursday, August 30 at 8:58am · LikeReply