Science of Eating Disorders Tumblr
Tetyana here. I run the Science of Eating Disorders blog. This is the SEDs-associated Tumblr. I post about ED research, (mental) health, psychiatry, and medicine. I reblog pretty art and photography, promote critical thinking, and rant about stuff. Previously answered questions are here. Content is not always on topic and may be triggering.


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The Genetics of Mental Illness

For mental illness and disorders we mostly lack clear biological markers or pathology, and so we have had to make do with clinical descriptions – lists of signs and symptoms. This is very much a descriptive phase of scientific understanding.

What almost every popular article I read on the subject gets terribly wrong, however, is in characterizing this as a unique feature of psychiatry, unlike the rest of medicineA recent Wired article, for example, writes:

In most areas of medicine, diagnoses are based on the cause of illness. Heartburn and heart attacks both cause chest pain, but they’re different diagnoses because they have different underlying causes.

At least they added the qualifier “most”, but even that is misleading.

In fact most disorders and medical illnesses begin their life as a description of signs and symptoms – a purely clinically defined entity. Scientists then investigate possible causes, with the full spectrum of success. For some illnesses we have very little idea, nothing but guesses, about the cause and pathology. In others we have a completely fleshed out model of what is happening, down to the most reductionist level.

The Wired article also notes:

What doctors now diagnose as schizophrenia may in fact be several disorders with different causes that happen to produce an overlapping set of symptoms.

True, but this is also true of many medical illnesses. ALS (Lou Gehrig’s disease, which causes progressive weakness), for example, is a clinical syndrome. We don’t know the ultimate cause, so it is entirely defined clinically. It is very likely to be multiple pathophysiological diseases with a common manifestation.

Migraine headaches are another favorite example. They are diagnosed by a list of symptoms, just like DSM diagnoses. Migraine is likely many different underlying biological entities that all manifest in a similar fashion. It is also possible that underlying biological traits manifest in some people as classic migraines, in others as a different type of headache, and in still others with no symptoms.

I love my friends. I ask them a question or forward a tumblr question/email  and they respond with essays and/or like 10 attachments to relevant PDFs. 

The Idea of Full Recovery: Is There a Light at the “End” of Recovery?

witch-rising:

Is full recovery possible? Or is full remission really just a high level of maintenence?

I have been struggling with this “idea” of full recovery for quite a while. I don’t know if it’s possible for me to be completely absent of self-hate for my own personality, as well as for my body.

In a video at my IOP center, shown a couple of weeks ago, an ED researcher stated full recovery is, indeed, very possible when viewing EDs from a biological/scientific standpoint. Further, she did mention if a patient decides to have a view of recovery as lifelong, then it is important for a practitioner to respect that choice.

Now, I appreciate her adding that a practitioner should respect a patient’s own journey of recovery. However, when I hear ED researchers and practitioners state one should “respect the choice of the patient to see recovery as lifelong,” I almost get the feeling they are saying, “Let the patient believe what they need to believe.” I see this as almost condescending. I am aware this could be my perception due to the fact that I have been struggling with the idea of full recovery. I still feel, though, as if insinuating those who choose to look at recovery as a life-long process are “not correct in their thinking,” is somewhat patronizing.

Do you believe in full recovery? If not, do you believe recovery is life-long?

We have a lot of science backing up the idea that EDs are a gene x environment interaction. There are many studies that look at those who are “recovered.” However, do we have enough evidence to suggest full recovery is possible? Is there sufficient scientific evidence for this idea?

( scienceofedsI apologize for tagging you, but I am genuinely confused. I am aware the above information is quite vague because I lost the name of the video and, therefore, could not directly reference it. I have had many professionals preach the idea of full recovery, but I don’t know where this idea is coming from or where this idea is emphasized in any studies. So, I tagged you because, unlike myself, you are trained in reading scientific articles. If you could point me in the direction of some, then I would be grateful. I understand you are very busy, so if you do not have time, then I understand.)

I forwarded the question to the-very-awesome Andrea (who is also on Twitter), and she got back to me with this response. I bolded the parts I think are particularly relevant: 

"I think this person (witch-rising) makes a really good point- the way the information about recovery being possible vs. “lifelong” does seem somewhat condescending in this case, though I have a feeling the practitioner’s heart was in the right place. I think it is unfair to present information about recovery in a way that preaches “full recovery! full recovery! everyone can get there! It will be like you never had an eating disorder at all!” and then follow with “but some people see recovery as a process and that is ok” because that inherently hierarchies orientations toward recovery. It is (of course) possible that some people will see the first option as possible and some will see the second as possible; it’s not so much that I disagree with what was presented as how it was presented. If we’re going to truly be open to different orientations to recover, this raises the question of how to do that without hierarchization or privileging one over the other. About the presentation of scientific information highlighting the possibility of recovery: it may be that this information refers to the actual physiological elements of recovery (e.g. weight restoration, muscle repair, etc.). While that is actually good to know (i.e. often your injuries can heal, that kind of thing) it leaves out some of the other parts of recovery that are so much harder to measure- things like emotions, mood, etc. In my opinion, recovery is far too complex to say with absolute certainty that full recovery is or is not possible. One of the main things to consider is that we can never know how someone else feels. This sounds really simple, but isn’t actually… and knowing this, it gets a bit more complicated to understand what someone means when they say “full recovery.”

Particularly for those of us who tend to be quite perfectionistic and/or literal about such definitions, it can be easy to fall into a trap of feeling like you haven’t quite “gotten there.” But is someone else’s definition of full recovery necessarily this magic place you’ve been dreaming of? Likely not. More than likely, “recovery” as such means that other parts of life have come to be more important, but not necessarily that you’ve forgotten you ever struggled or that you will never struggle again. Expecting perfection in recovery is a bit of a paradox in that it isn’t terribly genuine and likely sets one up for glossing over the challenges that might arise in life in general rather than dealing with them or developing alternative coping mechanisms for them (as opposed to symptoms). While I totally understand that “full recovery” can be aspirational and helpful for some people as they begin to seek it out, I continue to struggle with the kinds of images etc. we encounter in online spaces in particular that dichotomize between “full recovery” and “not quite recovered.” The kinds of lists and tables that place one behaviour or emotion in opposition to another “less recovered” one add fuel to the fire of wondering “if this doesn’t apply to me, am I recovered?” Speaking from an intersectional place, where every person’s life experiences are linked to their spaces of social belonging (things like gender, sexuality, race, ethnicity, culture, body size, etc.), it is not really possible to create a list of markers of recovery that apply to everyone at all times.

Of course, this is at odds with some research I’ve been involved with that is moving toward developing a consensus around what recovery “is” but I continue to advocate for a complex picture of recovery that takes the person’s experiences of themselves in a particular circumstance into account. I don’t think this is unscientific so much as pragmatic- “recovery” is in some ways a philosophical concept, which is what may make it more difficult to define and measure from a “pure science” perspective. This is likely why I tend to prefer perspectives which recognize the interlocking physiological, emotional, and sociocultural factors that work together in forming a person’s experience of eating disorders and recovery (like the recovery model) and those that take as holistic an approach as possible. Eating disorder recovery is particular complex because of these interlocking factors- this means that how we understand recovery will necessarily depend on which of these factors we find most compelling. There will be those who suggest that the physiological is most important, and so will continue to present a case for full recovery as tied to symptom remission primarily; others will expand this to include the kinds of psychological markers that have been empirically defined and measured (e.g. by using DSM diagnoses, EDE-Q scores, etc.) and those who, like me, question whether there isn’t something more nuanced about the experience of recovery that precludes it from being something we can measure across very diverse individuals living in different bodies, in different circumstances.”

Andrea has actually recently written a five (yes 5!) post series on recovery, you can check it out here.

Treatment studies have definitions of full remission or partial remission, but those are operationalized concepts and every study has their own definition (they have to define it somehow to study it quantitatively).

I tend to think full recovery is and isn’t possible. Yes, both.

I think it is possible in the sense that people tell me they think they are fully recovered/call themselves fully recovered, and I believe them because I don’t want to be a dismissive jerk and be like, “no you are not”. I mean who the fuck am I to say? How do I know how they feel. If they feel they are, then that’s great. That’s all that really matters anyway, right? 

I tend to think it isn’t possible because, unless you might’ve been sick for like 3 months, got immediately diagnosed with AN/BN/EDNOS/BED/whatever and recovered in 3 months or something, EDs are typically not brief illnesses, they are the result of complex GxE interactions, and they affect (and are affected by) how we think and feel. And so in that sense, I kind of feel like if full recovery = going back, on a physiological level, to a place you were at before you were ever sick, then I don’t think that’s truly possible. (But do we need to?)

So I think a lot of it depends on how we define recovery/full recovery — and, going back to the research, what we “find” in the literature is again very much dependent on how things are defined, especially as far as quantitative studies are concerned (although most treatment studies define full/complete remission in many different ways, and none of them are perfect definitions we’d all agree on).

It brings me back to how I ended my video on recovery (for Andrea’s MSc thesis, actually): 

"In recovery? In remission? Recovered? Who cares. I no longer want to put pressure on myself to live up to the definitions of those concepts, whether externally or internally imposed."

Seasonal BMI differences between restrictive and purging anorexia nervosa subtypes

To our knowledge, this is the first study in the literature providing data on seasonal variations in the BMI on admission of anorexia nervosa patients, and in the length of hospitalization.

❝ Ethnographic studies of eating disorder inpatient wards suggest that institutional structures and practices, far from being therapeutic givens, are deeply socially embedded. Indeed, some scholars argue that the same social logics that act in eating disorders are also displayed in the institutions meant to treat them. In her analysis of an inpatient ward in the United States, Gremillion (2002 [11]) argues that ward practices enact broader societal idealizations of ‘proper’ femininity, individuality, the family, and fitness, such that treatment itself – with its focus on measuring, exactness, surveillance, and resistance – reproduces the very practices that constitute anorexia nervosa.

— 

Between Difference and Belonging: Configuring Self and Others in Inpatient Treatment for Eating Disorders

This paper is open access.

Reflections on EDAC-ATAC 2014 Conference

The latest post by Andrea on the SEDs blog:

Last week I had the opportunity to attend and present at the Eating Disorders Association of Canada (EDAC-ATAC) Biennial Conference in Vancouver, BC. I was presenting part of my Masters thesis, which felt great. I always love talking to clinicians in the field, and I found that this was a very practical and applied-focused conference.

I sometimes feel like somewhat of an outsider at eating disorders conferences as I am “research only”- I do not have the credentials to counsel or treat individuals with eating disorders. However, I felt quite welcome at this conference. People were quite willing to engage with a relative newbie, in typical Canadian fashion.

If you follow me on Twitter, you’ll have noticed that I was tweeting up a storm. You might also have noticed that I was one of the only people doing so. I learned that this association is relatively new, in its present incarnation. EDAC-ATAC held its first large gathering in 2008, which is not all that long ago, which I actually found quite alarming. It might also explain the lack of social media presence! All this to say, if you like reading tweets about conferences, the hashtag is #edac14.

It seemed that most conference attendees were from BC, Ontario, and Quebec, with some representation from Nova Scotia and Alberta. Of course, not all those doing work with individuals with eating disorders across the country were in attendance, but I was still struck by the lack of representation from the territories in particular, as well as some of the Atlantic provinces like PEI and New Brunswick. One of the challenges we face in Canada is our enormous geography, which has implications for establishing consistent treatment approaches, protocols, and even just the logistics of meeting up as a large group.

CONTINUE READING

❝ Overall, existing ED intervention apps contained minimal evidence-based treatments and principles and failed to incorporate smartphone capabilities.

— Review of Smartphone Applications for the Treatment of Eating Disorders