January 26, 2015

Really? Really? How far have we come, really?

I have been at this ED advocacy long enough to have seen a lot of people come and go. Early on I assumed I would move on pretty quickly. I honestly and naively believed that the top issues I feel most passionate about could and would be solved if only people stepped up and made them a priority.

But I realize not much has been achieved. I know, I know: we've done so much. But I guess there was far more to be done than I'd considered.

I thought by now that:

  • The link between nourishment and the psychological symptoms of an eating disorder would be obvious and well-incorporated into treatment.
  • Parents would not have to fight to be included in, not to mention not be pathologized, in the treatment of their beloved children.
  • Standards for care based on current science would exist and be followed, and those who did not do so would be under pressure to do so
  • Nature and nurture would be understood as part of causing the illness but not in equal measure
  • Environment would be understood to include nutrition
  • EDs would be seen more like OCDs, where the "environment" part of the picture would influence the presentation but not the core disorder
  • Patients would have a range of options for treatment which would be coordinated and share common principles
We're not there, though. We're still fighting over basic stuff.

Progress is good. No, it's welcome and great. But jeez Louise, it is slow.

14 comments:

  1. Where do epigenetic effects fit into the causal equation?
    In other words, in light of recent research that has found that environmental factors can actually change people's brains at the cellular and genetic level, can we still ignore the environment in the discussion of what causes eating disorders?
    http://healthland.time.com/2012/02/15/how-child-abuse-primes-the-brain-for-future-mental-illness/

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  2. Epigenetics: great topic!

    I'm optimistic that epigenetics will help us understand ED and all mental illness but at this point what do we know? We know that starvation has epigenetic effects. We know that "environment" includes many things. We know that genetics is not simple. We don't know the relationship between EDs and epigenetic but by all means let's look.

    NO ONE IS IGNORING ENVIRONMENT in the equation. Even I, a rather biological determinist, believe both nature and nurture play their role in mental illness and in eating disorders. I just think environment includes prenatal nutrition and malnourishment and puberty andpossibly viruses and gut flora and not just how did mummy behave. More to the point, environment includes predisposition and how certain traits act on the environment as well.

    We've studied parent characteristics and experience quite a lot with eating disorders and found NOTHING. No link to abuse or parenting style or type of family. We keep looking there because, I think, we WANT to find the answers there. Epigenetics has much to tell us but it isn’t just another way to find fault with society and parents.

    Obvisouly, I'm not endorsing or excusing abuse, or discounting its effects. But eating disorders and other serious mental illness are not an indication of abuse. The implication that they are has a long legacy of keeping patients from getting the support and care they need to recover.

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  3. PS I believe the particular article you cite is about the brain damaging effects of abuse, not epigenetic effects?

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    1. In this article, they are one and the same, as environmental forces impacted brain cells on the DNA level. That is epigenetic brain damage.

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  4. That's funny, because there are several articles that would disagree with you. While we have never found that parents deserve the full blame, there are actually a myriad studies which have connected parental interactions with heightened ED risk.
    How is it that you continue to gloss over those in your quest to defend the belief which you've already made up your mind to cling to, as if your life depended on it?

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  5. Because believing I have the power to make someone mentally ill would be much more satisfying, and give me something to fix. The fact that I don't, and that no parent does, also makes us have to accept that we can't fix it by fixing ourselves. That there is incredibly hard work to do that isn't all about US, but rather about helping our child.

    That's parenting.

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  6. But hey, if you've got credible studies that establish a causal and modifiable link to parenting interactions THANK GOODNESS BRING THEM.

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    1. Here's one that actually shows significant results and also lists several other studies showing significant results: http://www.sciencedirect.com.ezp2.lib.umn.edu/science/article/pii/S1471015313001037#
      Not sure if this allows everyone to see the full article, but I hope it does, because there are several studies listed throughout the text.

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  7. http://en.wikipedia.org/wiki/Denial

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  8. http://en.wikipedia.org/wiki/Semmelweis_reflex

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  9. My observation is that there have been at least two positive changes during the past decade: 1) among the leading researchers and clinicians, parents are now viewed as typically having unique skills and therefore as part of the solution, not the problem, and 2) re-feeding protocols now specify early and aggressive re-feeding and rapid weight gain, compared to the old days when the philosophy was to "start low and go slow."

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    1. Agreed on both counts! Now we need to get these advances out to the public.

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  10. Our daughter was diagnosed with restricitve AN after she confessed to me she had been restricting her calorie intake, and I suddenly realised my always thin girl was seriously underweight!
    After our GP confirmed her BMI was 13 we were assured it was not about the food, but anxiety and that is what should be treated!
    Knowing nothing of the serious dangers and complications involved with having a BMI this low we continued to allow our daughter to walk to and from school each day and play tennis up to 4 days a week, including vigorous competition. We were then given the runaround for the next 6 weeks, first to a psychiatrist who diagnosed Hayley but informed us she had no room to continue seeing us, referring us back to the GP with the go ahead to start anti depressants and anti psychotic medicine.
    We then waited for the GP to refer us on to a dietition and psycologist.
    When no one got back to us she gave us some phone numbers to call these specialists directly and after another weeks wait we finally saw an adolescent psycologist who thankfully specialised in eating disorders!
    She was very alarmed at our daughters BMI and weight loss and advised us she should immedietly stop playing tennis and that she would normally hospitalise a child with this BMI.
    After our GP's relaxed attitude, we were not sure if our child was really as severe as she was making out.
    We were fortunate to have an eating disorder inpatient program at our local hospital with a bed available, and after they informed me that they had seen kids drop dead at this weight we took our daughter to the emergency department to be admitted.
    Those first few nights laying next to her bed in the hospital, watching her heart slow down to near stopping each night quickly showed me how serious this really was!
    After a 4 week stay in hospital with tube feeding she regained 4 kg, then over the next 3 weeks at home following an agressive refeeding program she gained another 5kg and was heading toward a healthy weight range!
    I have seen an amazing change in my daughters demenour, mood and happiness since her weight has been restored. I would never have guessed in a million years the proper treatment was to get her to eat heaps and heaps and heaps of calories what ever way we could, would be the first and only first step to treating this disorder.... This process involved being a total stone wall of "eat your food, I know its hard but eat your food, all the food on your plate, every time, 6 times a day, every day, even though you are constipated, even though it is painful even though breakfast takes 2 hrs and lunch time takes 3, eat your food!".
    I guess what I am trying to say is that on one hand yes, the lack of knowledge and support we original found when we first realised our daughter had anorexia could have cost her her life.
    And I was looking for ihelp I researched, rang hotlines, searched and searched and there was no help for us!
    Finally a referral from the right person saw us enter into the right program which did exactly as you are saying, the Maudsley method and family based therapy for quick agressive early treatment of AN and I have alot of my beautiful daughter back! She started school again part time this week, played a game of tennis with her father today, and is currently sleeping over at her best friends house across the road! (after dinner, with a quick visit home for supper lol).
    I am so thankful we were advised of this very effective treatment as I do believe it saved our daughters life and made us a stronger family because of it! (we have 2 younger children, 7 and 4).
    Thanks for your intelligent and informative articles on shifting blame from the parents and the children so we can all get on with the very hard and intensive job of refeeding and loving our wonderful, strong brave children, affected by such a vicious demon in the mind, which threatens to steal them away from us!

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    1. Oh, yes! This is exactly what we hope for families: to find good information and good clinical support as fast as possible and GET ON WITH helping their beloved children get better. Cheering for you and your family and your dear daughter. Cheering for you clinical team. Cheering for food and love and family!!

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