The Anorexia Nervosa Genetics Initiative

Philip Hickey, PhD
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On March 27, 2014, the University of North Carolina at Chapel Hill published a press release titled Dr. Cynthia Bulik of UNC leads multinational anorexia genetics project.

Cynthia Bulik, PhD, according to Wikipedia, is the “Distinguished Professor of Eating Disorders in the Department of Psychiatry in the School of Medicine at the University of North Carolina at Chapel Hill, a Professor of Nutrition in the Gillings School of Global Public Health, and Founding Director of the UNC Center of Excellence for Eating Disorders. Dr. Bulik is also professor in the Department of Medical Epidemiology and Biostatistics at the Karolinska Institutet in Stockholm, Sweden and holds an adjunct appointment at the Norwegian Institute of Public Health. She is ranked #2 in the Expertscape list of world experts in eating disorders.”

Here are some quotes from the UNC press release, interspersed with my comments and observations.

“University of North Carolina School of Medicine researcher Cynthia Bulik, PhD, FAED, Distinguished Professor of Eating Disorders, is the lead investigator of the largest and most rigorous genetic initiative in eating disorders ever undertaken.

The Anorexia Nervosa Genetics Initiative (ANGI) will collect clinical information and blood samples from more than 8,000 females and males who have had anorexia nervosa at any point in their lives and those without an eating disorder in an effort to detect genes that contribute to this potentially life-threatening illness.”

In its Spring 2015 update, ANGI announced that it had increased its recruitment goal from 8,000 participants to 13,000.

“‘Genome-wide association studies have been enormously successful in identifying genes that contribute to a range of medical and psychiatric conditions. These discoveries have opened up new avenues of understanding of both cause and cure,’ said Bulik. ‘Once we identify genetic associations in ANGI, we will use the information to develop better strategies to detect, treat, and prevent anorexia nervosa. If our project is successful, it will change the life course of millions of individuals with anorexia and their families.'”

Genome-wide studies may have found some success in general medicine, which deals with real illnesses.  But, although I’ve reviewed a good number of such studies in the psychiatric field, I cannot think of even one that has “opened up new avenues of understanding of both cause and cure.”  If psychiatry has indeed uncovered new avenues of cause and cure, then it needs to be said that they are being uncharacteristically quiet about them.  Throughout psychiatric practice, it’s pretty much business as usual:  “diagnose” through facile questionnaires and checklists, and “treat” with neuro-disruptive drugs.

“Each person’s complete set of DNA, or genome, will be purified from a blood sample, placed on tiny chips and scanned on automated laboratory machines. The machines quickly survey each participant’s genome for strategically selected markers of genetic variation, which are called single nucleotide polymorphisms, or SNPs.  If certain genetic variations are found to be significantly more frequent in people with anorexia compared with people without anorexia, the variations are said to be ‘associated’ with the disease. The associated genetic variations can serve as powerful pointers to the region of the human genome where the disease-causing problem resides.”

Note the assumption: that individuals who meet psychiatry’s vague criteria for anorexia nervosa have a disease, and the “disease-causing problem” resides in the genome.

“Cynthia Bulik, PhD, director of the UNC Center of Excellence for Eating Disorders, is the lead principal investigator for ANGI, which also includes researchers from the Karolinska Institutet in Stockholm, Sweden, the Queensland Institute of Medical Research in Brisbane, Australia, and Aarhus University in Aarhus, Denmark.”

. . . . . 

There is additional information about ANGI on UNC’s Center of Excellence for Eating Disorders webpage here.

The first thing one notices is that ANGI has its own very nice logo:

ANGI logo

 

Here are some quotes:

“ANGI represents a global effort to detect genetic variation that contributes to this potentially life-threatening illness. The goal of the research study is to transform our knowledge about the causes of eating disorders to work toward greater understanding and ultimately a cure.”

“If you have suffered from anorexia nervosa at any point in your life, you can help us achieve this goal. If you have never had an eating disorder, but still want to contribute, we invite your participation as well. Your contribution would include a brief 30-minute questionnaire and a blood sample. To make participation easy, we are working with a mobile phlebotomy company that can come to your home, or location of your choice, anywhere in the country, to draw your blood and ship it at back to us at no cost to you.

Only with your participation can we achieve our goal of eliminating this devastating illness. 

Participants receive a $25 Amazon gift card.

Participate Now!”

“We continue to be amazed by the tremendous amount of support we have received from around the country, and by the number of people interested in this groundbreaking study.”

“However, we know that we have not yet reached thousands of individuals who have suffered from AN who may wish to participate in ANGI and donate a blood sample in order to help stop this crushing disorder. If you would like to join the effort to crack the genetic code of AN, don’t hesitate to contact us or take the eligibility survey directly to find out if you’re eligible.”

Your eminent psychiatric researcher needs you!

Background

Of more significance, however, was the fact that the ANGI press release seemed vaguely familiar.  So I probed around, and found this:

GCAN image

 

Since 2007, the University of North Carolina Eating Disorders Program has led a world effort to unite clinicians and researchers around the world in an effort to identify genes that may influence risk for eating disorders. This resulted in the Genetic Consortium for Anorexia Nervosa (GCAN) representing researchers and clinicians from 16 countries around the world. Together with researchers from Kings College London, the UNC program was honored to receive a grant from the Wellcome Trust (WTCCC3) to conduct genomewide association on over 4000 DNA samples from individuals with anorexia nervosa. Members of the consortium gathered information about eating disorders course and genetic material (DNA) from individuals with anorexia nervosa. Results of this global cooperative effort will be released in early 2013.

GCAN’s final results were published in Molecular Psychiatry, 2014 October; 19(10): 1085-1090, under the title A genome-wide association study of anorexia nervosa.  As authors, the article lists 176 individuals plus “The Wellcome Trust Case Control Consortium 3”.  Dr. Cynthia Bulik is listed as an author, and also as a member of the Management Committee.

There are four closely typed pages of acknowledgements, which include:

“GlaxoSmithKline (GSK), Leeds (Yorkshire Centre for Eating Disorders). The authors acknowledge the support of the Medical Research Council and GlaxoSmithKline for providing financial support of this project. The support of the Carnegie Trust in the form of a travel award is also acknowledged. We also acknowledge the help and support of the Discovery and Pipeline Genetics, and Translational Medicine and Genetics departments at GSK for their contributions to this study. In particular we would like to acknowledge Mike Stubbins, Julia Perry, Sarah Bujac, David Campbell (at GSK currently or at the time when the study was performed), John Blundell (Leeds University), and Evleen Mann (Yorkshire Centre for Eating Disorders), for their fundamental contribution to the realization of this study.”

and

“United States. Vanderbilt University School of Medicine, Nashville TN, and the Kartini Clinic for Disordered Eating, Portland, OR. Cases were ascertained from the Kartini Clinic, Portland Oregon. Sample collection and processing was funded by a Bristol-Myers Squibb Freedom to Discover Unrestricted Metabolic Diseases Research Grant to RDC.”

Under the heading Conflicts of Interest it states:

“Conflicts of Interest: Patrick F. Sullivan was on the SAB [Scientific Advisory Board] of Expression Analysis (Durham, NC) [A privately held biotechnology company that specializes in genotyping assays.].  Cynthia Bulik was a consultant for Shire Pharmaceuticals at the time the manuscript was written. Federica Tozzi was full time employee of GSK at the time when the study was performed. David A. Collier was employed by Eli Lilly UK for a portion of the time that this study was performed. James L. Kennedy has received honoraria from Eli Lilly and Roche. Robert D. Levitan has received honorarium from Astra-Zeneca.”

The GCAN Study

Despite the initial enthusiasm, and the truly staggering range of international involvement, the results of the GCAN research were essentially negative:  the study did not yield statistically significant results.

Here’s the abstract:

“Anorexia nervosa (AN) is a complex and heritable eating disorder characterized by dangerously low body weight. Neither candidate gene studies nor an initial genome wide association study (GWAS) have yielded significant and replicated results. We performed a GWAS in 2,907 cases with AN from 14 countries (15 sites) and 14,860 ancestrally matched controls as part of the Genetic Consortium for AN (GCAN) and the Wellcome Trust Case Control Consortium 3 (WTCCC3). Individual association analyses were conducted in each stratum and meta-analyzed across all 15 discovery datasets. Seventy-six (72 independent) SNPs were taken forward for in silico (two datasets) or de novo (13 datasets) replication genotyping in 2,677 independent AN cases and 8,629 European ancestry controls along with 458 AN cases and 421 controls from Japan. The final global meta-analysis across discovery and replication datasets comprised 5,551 AN cases and 21,080 controls. AN subtype analyses (1,606 AN restricting; 1,445 AN binge-purge) were performed. No findings reached genome-wide significance. Two intronic variants were suggestively associated: rs9839776 (P=3.01×10-7) in SOX2OT and rs17030795 (P=5.84×10-6) in PPP3CA. Two additional signals were specific to Europeans: rs1523921 (P=5.76×10-6) between CUL3 and FAM124B and rs1886797 (P=8.05×10-6) near SPATA13. Comparing discovery to replication results, 76% of the effects were in the same direction, an observation highly unlikely to be due to chance (P=4×10-6), strongly suggesting that true findings exist but that our sample, the largest yet reported, was underpowered for their detection. The accrual of large genotyped AN case-control samples should be an immediate priority for the field.” [Emphasis added]

This is fairly technical, but the gist is contained in the sentence:  “No findings reached genome-wide significance.”  In other words, none of the associations between a “diagnosis” of anorexia nervosa and a genetic variant was statistically significant.

Discussion

There are two additional points in the abstract that warrant some discussion and elaboration.  Firstly, the finding that two variants (9839776 and 17030795) were suggestively associated with a “diagnosis” of anorexia nervosa, means that the variants in question were skewed in the direction of a positive association, but were of insufficient magnitude to warrant such a conclusion.  In other words, a small number of the “diagnosed” people had the variant in question, but lots of them did not.  The skew could simply represent a chance fluctuation in the samples of people tested.  The probability values (P = 3.01 x 10-7 and 5.84 x 10-6) seem impressive in the context of most psychosocial and medical research.  P = 3.01 x 10-7 means that there is only a 3-in-10-million chance that such a result could be a random fluctuation.  In ordinary research, one would accept such a finding with little reservation.  But genome-wide studies involve literally millions of observations and comparisons, and events with a likelihood of only 3 in 10 million actually occur quite regularly.  For this reason, genome-wide studies (including the present study) use a significance threshold of P = 5×10-8 (5 in 100 million) to screen for random fluctuations.

Secondly, the reference to discovery/replication comparison refers to the fact that the researchers initially split their participants into two groups.  The data from the first group was used to look for associations (discovery), and the data from the second group was used to attempt to replicate any associations discovered.  In the discovery phase, the researchers identified 72 variants which were associated weakly (and to a degree that was not statistically significant) with a “diagnosis” of anorexia nervosa.  In the replication phase, 55 of these variants showed weak associations in the same direction.

The authors make the point that this suggests that there are some real associations in these variants, but that it will require larger studies to confirm these with a reasonable degree of confidence.

The idea here can be illustrated with a coin-tossing example.  Suppose we have a coin that has a 1/500 bias towards heads.  For all practical purposes, this is a fair coin and the bias would not be detectable in relatively small trials.  But if we toss the coin a million times, we will start to notice a slight preponderance of heads, and if we continue the trials, this preponderance will eventually cross an assigned confidence threshold.  But although the difference is real and the analysis is statistically significant, it’s still a very tiny — indeed inconsequential — bias.

In the present context, the authors are essentially making the best of a bad lot.  It is reasonable to infer that they had hoped for a more definitive result, and were perhaps disappointed.  But they have managed to pull just enough hope from their data to obtain funding for another, bigger, study – the ANGI project mentioned earlier.

Perhaps ANGI will reveal a weak, but statistically significant, association between a gene variant and a “diagnosis” of anorexia nervosa.  After all, genes determine the body’s structure, and structure has an affect on our thoughts, actions, feelings, etc.  It is likely, for instance, that a large genome-wide study comparing professional cyclists with non-cyclists would show some weak associations with a few variants. This would be of interest to biologists, of course, but it would not establish the notion that professional cycling is a disease, or that it is caused by genes.  Nor would it be of much help to cyclists pedaling through the Alpine foothills in the Tour de France.

But even if ANGI reveals a weak, but statistically significant, association between a gene variant and a “diagnosis” of anorexia nervosa, this will not “crack the genetic code of AN,” for the simple reason that no such code exists.  What psychiatrists call anorexia nervosa is not a single entity, but rather a loose collection of vaguely defined thoughts, feelings, and behaviors.  There is a common core to this aggregate, namely insufficient dietary intake, but the notion that this diverse collection of problems and feelings could be caused by an identifiable genetic code is quite a stretch.

In this regard, it is worth reflecting on the DSM-5’s definition of anorexia nervosa.  There are three criteria:

“A. Restriction of energy intake relative to requirements, leading to a significantly low body weight in the context of age, sex, developmental trajectory, and physical health.  Significantly low weight is defined as a weight that is less than minimally normal or, for children and adolescents, less than that minimally expected.

B.  Intense fear of gaining weight or of becoming fat, or persistent behavior that interferes with weight gain, even though at a significantly low weight.

C.  Disturbance in the way in which one’s body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight.” (p 338-339)

The first noteworthy feature of this list is that amenorrhea, which had been a requirement in DSM-III and DSM-IV, has been dropped.   No explanation for this change is provided.  On page 813 of DSM-5 it simply states:  “The core diagnostic criteria for anorexia nervosa are conceptually unchanged from DSM-IV with one exception: the requirement for amenorrhea is eliminated.”  There is an additional statement on page 341:  “Physiological disturbances, including amenorrhea and vital sign abnormalities, are common.”  Common, but not required.  Again, there’s no explanation as to why amenorrhea is no longer a necessary criterion.  It is clear, however, that removing this requirement expands the diagnostic net.

Secondly, it is noteworthy that although DSM-III and DSM-IV had required that body weight be at least 15% below expected weight, DSM-5 requires only that the person’s weight be “significantly low.”  The definition of “significantly low” provided in the DSM-5 — “a weight that is less than minimally normal” — is not a definition at all, and it is clear that this matter is simply being left to psychiatric judgment, opening the door to “diagnosing” people who would not meet the earlier 15% threshold.

Thirdly, DSM-5 follows DSM-III and DSM-IV in listing “intense fear of gaining weight…” as a criterion.  But DSM-5 eases the requirement considerably through the use of the following mental gymnastics:

“Individuals with this disorder typically display an intense fear of gaining weight or of becoming fat (Criterion B).  This intense fear of becoming fat is usually not alleviated by weight loss.  In fact, concern about weight gain may increase even as weight falls.  Younger individuals with anorexia nervosa, as well as some adults, may not recognize or acknowledge a fear of weight gain.  In the absence of another explanation for the significantly low weight, clinician inference drawn from collateral history, observational data, physical and laboratory findings, or longitudinal course either indicating a fear of weight gain or supporting persistent behaviors that prevent it may be used to establish Criterion B.” (p 340)

In other words, some of the individuals “with this disorder” may not “recognize or acknowledge” their fear of weight gain.  In such cases the psychiatrists can decide that they have this fear on their behalf and can thus “establish Criterion B.”  Once again, the “diagnostic” net widens.

Fourthly, Criterion C is hopelessly vague and subjective.

Psychiatry routinely justifies these kinds of criteria changes on the grounds that they reflect increased knowledge of the “disease” in question.  But this is untenable because there is no definition of the “disease” other than the DSM criteria.  There is no disease entity whose pathology has been defined and whose symptoms can be elucidated with increasing precision and clarity as is the case with real diseases.  In psychiatry, the only “entity” is the criteria list.  This is arbitrary to begin with, and in the absence of any underlying pathology, all additions/amendments are equally arbitrary.  This is why psychiatry can continue to widen their “diagnostic” net pretty much at will:  there is no reality to which these amendments must conform.  “Anorexia nervosa” is whatever psychiatrists say it is.

If we wish to understand what motivates individuals who systematically under-nourish themselves in these kinds of ways, we need to do two things.  Firstly, we need to abandon the empty, disempowering psychiatric labels and their entailed assumptions that one explanation fits all.  We need to recognize, that in the area of human thinking, feeling, and behaving, there are always multiple paths to the same place, and that although there will inevitably be a measure of similarity between people’s experiences and motivation, it is through focusing on the uniqueness of each individual that we come to understand his or her perspective.  Secondly, we need to sit down with the individual in a spirit of trust and collaboration, and listen to his or her concerns.

It is not a matter of DNA.  It is a matter of helping people find some sense of autonomy, purpose, fulfillment, and self-direction in a world that is becoming increasingly isolated, alienated, and divorced from our evolutionary origins.

36 COMMENTS

  1. Great article, Phil!

    Two things come to mind. First, the kind of genome-wide associations they are looking for are so broad and so infrequent that even if they did find such an association, it would apply only to a tiny percentage of the people so diagnosed. Far from a key to understanding the larger cohort, such a finding would at the VERY best provide a possible explanation for a tiny subset of the whole. And even such an “explanation” is only an association – there is really no way to establish causality simply because of the presence of such an association, as you so clearly explain above.

    More important, let’s suppose there IS an association of some sort that is found. SO WHAT? Does that give us the SLIGHTEST clue of what to do about the situation? Other than giving genetic counseling to parents whose children are affected by these genes (who would then be advised that their children had a less than one in a hundred chance of developing an eating disorder???), what would be DONE differently as a result of a positive finding for a tiny percentage of all anorexia sufferers?

    On the other hand, sexual abuse, witnessing domestic abuse of a parent, and abuse in general are all associated with eating disorders. Something like 30-40% of eating disorder sufferers acknowledge having been sexually abused as children. Compare this percentage to the paltry results that the most positive spin possible could put on their figures for genetic correlation. Obviously, abuse as a child kicks genetics’ ass as a likely causal factor. And you can actually DO something about an abuse history!

    So we spend billions on analyzing someone’s genetics, when the correlations have historically been very low even for PHYSICAL disorders like heart disease and cancer, and when there is basically NOTHING we can do to change the suspected genetic defects, yet we minimize or ignore the abuse history so often associated with anorexia, which is something we actually could help a person process and move through toward a healthier and happier life. Talking about misplaced priorities!

    Of course, this doesn’t even talk about the cultural impact of our thin-focused culture. It is well established that non-Western countries have much lower rates of eating disorders, and that as Westernization moves in, eating disorder rates rise accordingly.

    http://www.healthyplace.com/eating-disorders/articles/eating-disorders-culture-and-eating-disorders/

    It never ceases to amaze how much money we waste studying genetics when genetics are the one thing about a person that is essentially unchangeable. Though when one reads the list of conflicts of interest, the motivation, I think, becomes clearer. They only want to find some excuse to CLAIM that eating disorders are genetic so they can market a drug to “treat” them, as well as selling expensive testing methodologies so you can find out if you “have” the dreaded Anorexia Genes. The actual needs of the clients are obviously secondary to the marketing and moneymaking festival that is anticipated by the authors, and probably by the funders as well.

    —- Steve

    • Steve,
      Good comment. It is perhaps not so amazing why the researchers sponsored by drug companies continue with this doomed “research.” The financial rewards are so very large; how many psychiatric researchers would give up their career, their six-figure income, and admit that much of what they’ve been taught is a lie, even if it is the honest thing to do?

      The phantom/simulacrum of “brain-based inherited psychiatric disorders” is sort of like an addictive drug that both Big Pharma companies and psychiatric researchers cannot get enough of. But there is no discrete anorexia, and even if there were, finding genes that contribute slightly to elevating its risk would do nothing to help people. Myths can be so so powerful once they are linked to money and profit… and also, once they are linked to a doomed hope of a quick fix for people suffering from complicated problems. Just look at how many people participated in this trial. The most they’ll ever get out of it is the Amazon gift card, not anything to help their eating problems.

      Eventually I think more people are going to wake up to this situation about psychiatric research. Because year, after year, after year, after year, no actual help or improvement to suffering people will come from psychiatric genetic research. In fact, I think it’s correct to say that no service user has ever been helped by psychiatric genetic research. Eventually more people will sense how the wool is being pulled over their eyes. Although, it seems to me that this research is so bad that it never even reaches the point of generating an intervention of treatment that might do anything to help a real person. So maybe the disconnect will persist due to the incredible degree of unreality of it all.

      I am a bit discouraged at the degree of unawareness among young people in America about all of this. But I hope that some tipping point will be reached where the current ignorance and lack of skepticism will shift into a new equilibrium where increasingly more people become aware of the lack of validity behind psychiatric research.

      • BPDTransformation,

        A particular irony in all this is that genome-wide studies are specifically geared to find small genetic associations. The big associations (hemophilia, Tay Sachs, Huntington’s, sickle cell anemia, etc) have been know for generations. And yet in the study in question, the opening line was: “Anorexia nervosa (AN) is a complex and heritable eating disorder…” It’s about hype and PR, not substance.

    • Very much agree, Steve. Such an absurd waste of money. Just imagine if those funds could be spent on programs for prevention of child abuse, investigation of child abuse cases (many of which aren’t investigated ), support for at risk families, our foster care system, etc. That kind of spending may actually do something to stop eating disorders.

      I thought it was very common knowledge, even outside of psychiatry, that eating disorders are due to environmental causes. So I don’t know why anyone buys this genetic bs.

      • Speaking of environmental causes, I always thought that societal emphasis
        on conformity to beauty standards emitted by the media was the chief catalyst for middle and upper-class young women conditioned to become perfectionists was at the root of eating disorders. Also some suggest, that the desire to hang onto adolescence lay at the root of the problem. Any way, why would a behavior issue that effects only a certain strata of society assume to have a genetic cause?

  2. This is an area in which I know quite a lot since I was deeply affected by this condition as a teenager, over 35 years ago. My experience was quite severe and I could have died given the degree to which I was systematically starving myself by over-exercising and under-eating for several years.

    My thoughts, now that I have had a full and lasting (over 3 decades) recovery from this difficult period in my life are that starving oneself is a meaningful response to a life of pain in which one feels that he/she has little power to respond to his/her life situation. Working with a therapist who helped me see the lack of safe boundaries in my family of origin, my tendency to be a perfectionist as a way to gain approval from a family system that ignored me, our society’s tendency to idealize thinness and objectify women and my lack of maturity due to my lack of consistent and sufficient parental nurturing were all very related to my restrictive eating behaviors and obsession with my weight.

    After several years working with an insightful, person-centered and trauma informed therapist, I moved past my obsession with weight and have remained free of eating and or weight concerns for over 30 years. I can assure you that DNA research would have had little benefit or meaning for me, then or now. When it comes to most emotional and mental health concerns we must ask, “What happened to you?” not “What’s wrong with your DNA?”

  3. Hi Philip, I think this article is very worthwhile.

    The bio technical theorising reminds me a bit of medieval witch finders.

    What I’ve noticed is that anorexia can spread in groups with people copying each other – and this has nothing to do with genetics.

  4. Is this real Phil? There’s actually a distinguished professor of eating disorders somewhere? And there are rankings of experts on eating disorders? How ridiculous.

    Before I read your article, I’m gonna write out for myself the problem with investigating, “the genetics of eating disorders such as anorexia”:

    Just like with feelings of unreality, depression, or anxiety, problems of over or undereating are problems of degree which exists in unique ways in different individuals at different times, in relation to different environmental stresses or deficits. Genes do not cause anything alone, but rather provide a template or modifiable set of possible developmental lines that is uniquely imprinted by the effect of environmental stimuli. Furthermore, the investigation into genes on eating disorders is already dead because there is no valid or reliable illness called anorexia out there; just real people who have serious but unique problems with undereating caused by different clusters of experiences, internal and external.

    Furthermore, even if you know of certain gene clusters that slightly increase risk at a group level, it doesn’t allow you to do anything significant to cure or change behavior in an individual. That takes relationships and higher level understanding of the complex causes of problems.

    So this initiative is doomed. The fact that the article even suggests that genes are causing a psychiatric disorder is ridiculous and should be an embarassment to these universities.

    I wonder if these people actually believe in the research they are doing? What do others think… the ignorance and stupidity to buy these reductionistic ideas about human behavior is unfathomable.

    And what a waste of money from the Welcome Trust. At a point in time when human civilizations are massively in debt, when the global economy is very shaky due to the ups and downs of fossil fuel prices and the looming spectres of peak oil and climate alteration, they are trying to find a gene for this ghostly disease.

    With regard to the barely-there results, these researchers are like a compulsive gambler who loses almost all his money, then finally wins a tiny percentage of it back. And then tries to go to find way more money to go back again and hope he’ll score big the next time. It is never going to work.

    With genes and psychiatric disorders, the house always wins.
    (Does DSM 5 really have over 800 pages? Thank God I’ve never read that shit in full.)

    Let’s see if that was on target…

    Yep, pretty much. As Phil said, just by sitting down and talking with one single person about their eating concerns for one hour, one can be more helpful to more people than these researchers with their millions of dollars of funding will ever be.

    • BPDTransformation,

      I also was surprised at the expert ranking system – like tennis pros, I guess.

      And if you count the Index, DSM-5 has 947 pages. And incidentally, DSM-I had 130 pages; DSM-II had 134; DSM-III R had 567; DSM-IV had 886. Never mind the quality, feel the width!

  5. As one who has suffered through the disorder eating behaviors and the physical effects, not once have I ever wondered why. I know the cause, for me. And I am pretty positive that all other sufferers, if honest with themselves, know deep down too. And let me the you, it has not one thing to do with my DNA. For me, when it kicks in the hunger gets so much that it consumes the mind, making it harder to have the memories of abuse as a child, then being labled for the subsequent depression when pedophile was kept in the family, forcefully drugged…. well, when everyone who says they are helping you and love you yet all of their actions are in complete contrast to that, you can’t live in that reality for long when it hurts so much. I just wanted someone to listen and help, instead they tried to drug it out of their site. Today, I am in what they call “relapse”. I have flashbacks from their “care” that was anything but. I am trying to figure out how I heal my heart so I can find the courage to keep my body alive. That has nothing to do with anything that these so called experts profess to know. Unfortunately, I have found myself in a place where they say I can go to treatment voluntarily, for now but my window of voluntary treatment is closing. It sucks that that which I am scarred by is professing now to be what will heal me. And fyi, in treatment they refer to everyones eating disorder as ED, like another being inside of you. Brainwashing clients to nearly believe in an almost split personality like thing. And the meds, the mounds of meds……. no wonder the relapse rate is so high…

    • Thanks for your harrowing account of both the genesis of your behaviour around eating and your systemic neglect and abuse by psychiatry.

      I question your use of the word, “Treatment?”

      Your account leads me to think you needed, and probably still need, people who were offering things that had the qualities of: understanding, compassion, a sense of justice tempered with respect for someone’s self determination and autonomy.

      To call such help, “Treatment,” seems demeaning and somehow odd.

      I wish you luck though and I hope some help you got was useful and that you find more useful support in the future.

      • Wow, thank you! I too hate the word treatment. It doesn’t fit. The truth is, I am scared to death to be anywhere, even if I am in a frame of mind to know my rights, my right at this time to refuse medications. But I cannot survive going into a hospital psych hospital ever again and those are the choices I am faced with. So voluntary, no meds because those lead to the most horrific place on earth, seems like the only option. I just am not sure how much help it will be beyond weight restoration because I have learned to not ever again trust the system with the details of my heartache and trauma, they only see symptoms and never actually hear you. I am not sure if this is how life is supposed to be, but I know that I can no longer trust another to hold sacred, my truth, my life. All I wanted was to forget, because asking for help only killed me more.

        • Wow, I am used to hearing stories of incompetence and abuse from psychiatry, but I think yours hits me harder than most, because the causes of your suffering are SO obvious and right on the surface, and yet they seem to want to blame YOU for being upset about what happened to you and coping with it the best you can! It does anger me that the victim “needs treatment” while the perpetrator appears to get away with whatever they did with no particular consequence. Who is the sick one, the one who intentionally does damage or the one who us upset by the abuse they suffered? Isn’t it NORMAL to be hurt and angry and scared after being taken advantage of and disbelieved by the people who are supposed to care for you?

          It sounds like you need to talk to someone who is an expert in helping people heal from the damage of abuse. Such a person would not label you and make it seem like you have a “disease” of some sort. They would validate your pain and normalize your efforts to keep your pain at bay through whatever means you have come up with. They’d let you know that many, many people who suffer from sexual abuse in childhood use food or other more extreme means to re-establish some sense of control of their lives. And I would hope they’d give you some idea of a path to making things feel a little better so you won’t be constantly fighting off the pain. Food would be a very, very small part of the conversation, and drugs would not even come up.

          If you can’t find a professional to help with this, have you considered going to a support group for others who have been through this kind of painful experience? I bet you’d find a lot of folks who found the psychiatric system unhelpful or even damaging and abusive, as you have experienced it yourself. You might also find some people who have found some ways to make it a little easier to move forward and heal. It might be worth looking into.

          Bottom line, you’ve been massively disserved by the people purporting to help you. I wish there were more I could do to help myself, but I appreciate you sharing your story and giving an excellent example of exactly what I was saying above – “eating disorders,” if we must call this common coping measure something, are not about food. They’re about managing emotions. And there really is no drug for that, nor will there ever be.

          Thanks for having the courage to share. I hope you’re able to find someone who can help, because there really are people out there who understand your situation and how to help. You will have to look around, because these people are very much in the minority these days, but they do exist.

          Hang in there!!

          —- Steve

          • Oh my gosh Steve, Thank you! After nearly 20 yrs of being told that there was actually something inately wrong with me because I was believed, the police were involved, he plead down and my family member stayed married to him and I was significantly traumatized everytime I saw her, it’s nice to hear someone “get it”. He admitted it once all the evidence was clear, yet I got force drugged, brainwashed, seperated from my sisters, had my parents be told I was a lost cause, electrocuted and have male dr’s refuse to allow me to give myself an enema and was subjected to rectal digital stimulaion while on zyprexa by a dirty old man…..only now am I finding the courage to fight back. NEVER AGAIN! I will never allow anyone to treat me as anything less than human, at least not without them ending up scars too…

          • It all makes too much sense to me. I don’t know why this is not obvious to anyone trying to help. In the end, empathizing with the person who was victimized is more important than any degree or professional role a person might have. I would really suggest you try out a support group, unless the idea just freaks you out too much. I think it would really help to hear that you’re not alone, that others do the same things for similar reasons and get the same treatment from “professionals” that you did.

            Glad to know you’ve still got some fight in you!

            — Steve

  6. …although there will inevitably be a measure of similarity between people’s experiences and motivation, it is through focusing on the uniqueness of each individual that we come to understand his or her perspective.

    This what is threatening not only to psychiatry but to anyone who likes to deal with behavior in terms of categories (even “alternative” categories).

    • Oldhead,

      Yes. It is extremely threatening to psychiatry because it throws the whole notion of “treatment guidelines” and “treatment protocols” out the window. The medical model, effective as it is in dealing with real illnesses, is an unmitigated disaster in problems of thinking, feeling, and behaving.

  7. Dear Philip Hickey, I am VERY HAPPY that finally MIA is putting up articles on eating disorders. This has been sorely lacking around here. Almost as if it’s taboo to talk about ED. I want to ask, Phil, do you, or did you, ever experience an ED first hand? If not, why are you now claiming expertise? Or anyone here besides those brave commenters who have spoken out about their experiences with anorexia or other ED’s? Do you all’s know what it feels like to starve yourself nearly to death? It’s not pretty, nor glamorous, nor fun. You get treated like crap afterward, too. And by the way, Cynthia Bulik went through it herself. So personally, I respect that a lot.

    I respect that more than I respect degrees on the wall. However, the drug associations you point out concern me deeply, Phil. Have you confronted Cynthia directly on this? If not, perhaps I will myself!

    You are dead wrong regarding biological causes. This shouldn’t take rocket science, and doesn’t. I had ED myself for over three decades because I was dumb enough to see a therapist and psychiatrist for it, and these “treatments” had no answers for me.

    Why do some people get anorexia, and others do not? Because some of us get into a “high” when we starve, and others do not get as “high” so they end up caving in to hunger. Still others zone out and “forget” to eat, or get so weak they lose the strength or will to feed themselves. We starve because starvation is there. And because somehow, something gave us spark of an idea to go on a diet. It may be one remark made by a teacher, or a relative, or an event. Or gaining that Freshmen Ten. While we may choose to diet, we didn’t realize it would end up in Hell on Earth. That part was not chosen.

    Still others get ED because of food allergies or sensitivities. Sometimes, a climate change or change in food environment can be the triggering factor, such as moving into dormitories where the food choices are different and overwhelming. Often, we are caught in a culture clash involving food or weight when environment changes. Sometimes, sugar is a factor, such as low blood sugar, diabetes mellitus, or sugar addiction. Some of these are physical causes and can be hereditary.

    But anorexia itself, since (according to my personal definition) it’s two-fold, being 1) the ability to continue starving, and 2) a beginning of a diet or triggering event, cannot possibly be hereditary in itself. It isn’t an entity. It isn’t a thing. By all means, it’s not person or Devil that we have married that needs exorcism. We aren’t skinny monsters, like Carrie out of a Stephen King novel, a possessed girl bound to die since no one dares get near her. Girls seen as possessed are killed. Someone needs to tell Renfew et al their potions are poisoning us all.

  8. By the way, I am going to be having an online Alternatives-style EATING DISORDERS conference because there seems to be a need. We need to stop the status quo One Size Fits All that’s out there now. This will be free, that is, no charge to attend. We will be having guest speakers and panelists and the sessions will be accessible after the conference. If you want to get involved, please let me know! The idea behind the conference is that WE are the experts on our own experience. Time to bust the myths.

  9. I am so glad to see a post on the topic of eating disorders, something I (unfortunately) have much personal experience with.

    Incidentally, I actually had my blood drawn as part of ANGI. I hesitated to do so, as I don’t really believe biological research is the way to go for AN, but I wanted the 25 gift card. I guess I’m an easy sell.

    It might surprise some readers to know that the leading researchers on AN and the other EDs are virtually entirely focused on biology as The Cause of these life-threatening illnesses. Many of the heads of ED treatment centers, including the “top” centers in the country, are straight white men, the very group least likely to succomb to EDs, as well as the ones whose voices are taken most seriously by society.

    I went to a movie screening of the Documentary America the Beautiful. Someone asked a question about what causes anorexia. In addition to the film director, one of the two male heads of the ED center was there. He answered, quite simply, that the cause(s) were entirely biological. Never mind that the friend I was with, a fellow sufferer, and I disagreed. We just sat there quietly, as us women do.

    In a way, we should not be surprised that all the funding for ED research is going into biological causes. That’s the way things are going for all other mental illnesses as well, of course. It’s just that…with EDs, it seems so patently obvious that societal factors are at play. AN was extraordinarily rare until several decades ago. Bulimia Nervousa (BN) wasn’t even considered an eating disorder by the DSM until the early 1980’s, if I am remembering my years correctly. It was said that some women just didn’t know how to lose weight in healthy ways. And only looking at genetic and other biological causes leaves out the FIji study, where once Western media was introduced to the small island, anorexia and other EDs emerged where there previously had been unheard of.

    There have been some studies done that show differences in the brains of recovered (or active) anorexics and healthy controls. But, we do know that starvation changes the brain and functioning of the body more generally, so we can’t say that recovered anorexics are born with a certain genetic or biological predisposition.

    This all said, it is an oversimplification to blame AN solely on societal messages to have a thin body. After all, we all get those messages, but most people do not go on to develop EDs. Furthermore, society does *not* encourage or celebrate a totally emaciated, skeletal body, with no apparent secondary sexual features–a look many anorexics crave. Starvation does change the way the brain functions, and I found, when I was at my lowest weight, I felt the most at peace in my head. Nevermind the very real physical problems I was having, or that I was lucky not to have died. But there are many factors, including interpersonal trauma, and an overbearing, overprotective, family style, that contribute to the spiral known as AN. And once it gets started, it is extremely hard to stop. Positive messages–or any messages that one is thin, really–can keep the cycle going. I know I absolutely lived for people saying how “tiny” I was.

    Anything they discover in ANGI will only apply to a subset of sufferers. But my fear is, they’re going to use this research to come up with new drugs that will be pushed on sufferers when they are most vulnerable. I used to talk with a friend about whether we’d take a pill if we new it would cure our ED, and we both said no. The reason being, the process of recovery, of creating a new identity, of learning to trust yourself and your body, and use your freakin’ voice, are part of what makes us human.Never mind that, with AN, unlike most other mental illnesses, the person does not want to get better, and a pill is unlikely to change that.

  10. I agree but also there is too much stereotyping. Not all of us are perfectionists. I am not. Also, my family was not overbearing nor overprotective. We did not fit the stereotype and looking back, I realize just how much those “therapists” so badly insulted both my parents and insulted our Jewish heritage and upbringing. I got very tired, after many years, of hearing the “better parent” theories from those egotistical therapists who claimed they could do better. Often, the therapists were female and they claimed to be better mothers, though they didn’t use those words. I cannot tolerate arrogance in doctors who have never had ED. They have never starved nor felt it, how can they know? The male doctors were worse.

    I got so tired of the parent-blaming. It disgusted me, and I feel awful that my poor mom got the brunt of it. Had I not gone to shrinks, I would have gotten better in a couple of years, not three decades, because I would have listened to her. She was recovered anorexic herself, and I’m sure her practical sense would have guided me far better than those haughty a-holes did.

  11. Incidentally, I just found this: http://economictimes.indiatimes.com/magazines/panache/genetic-risk-stress-dieting-triggers-eating-disorders-in-humans/articleshow/51863737.cms

    I have never before seen anorexia called “incurable.” They’ve been pushing the “full recovery is possible” slogan down our throats for ages now. Honestly, I don’t care anymore.

    Let’s put it this way: Suffering is a choice. The rest we may have fallen into, as no one chooses to have an ED. You do not have to suffer.

  12. Hello again….I am back! I note that the Cynthia Bulik states publicly that the study is funded by the Boston-based Klarman Foundation. This is the same family that funded the “unit” at McLean for ED, (which I believe is over on the corner of the campus which once housed the outpatient clinic back in the late 1990’s if that rings a bell). I believe the Klarman Center treats women and girls under 26 but I’m not sure as policies change as does McLean according to what’s most profitable.

    Here’s the Klarman Foundation website: http://archpsyc.jamanetwork.com/article.aspx?articleid=2491354#.VzcfMVovyGc.twitter

    Of note: I have been chatting with the organizer of World ED day from Tanzania who reiterates the legitimacy of this study. However, I have told her that due to the Pharma leanings, I am not convinced that it is not fudged or biased in some way, but this organizer seems totally convinced. It seems that folks desperately want to believe the genetic base. I think desperation and wishful thinking drives us to want the magic pill too much, though, maybe to the point of believing just about anything.