Renaming a Disorder

What’s in a name? Quite a lot, considering the huge commotion over proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM). Almost a thousand pages long, this psychiatric bible is
used all over the world to classify and diagnose mental patients – it’s
the definitive authority on that nebulous concept known as “normal”.
The implications of any revisions are tremendous, and
the American Psychiatric Association, publisher of the manual, has attracted support as well as harsh criticism.
Could these revisions actually cause more harm than good? I’m not sure,
but I want to explore the implications of just one of the proposed
revisions – that concerning EDNOS, or “Eating Diso
rders Not Otherwise Specified.”

In
the current DSM, EDNOS is essentially a catch-all category for cases
that do not match the criteria for the other two main eating disorders:
anorexia nervosa (AN) and bulimia nervosa (BN). Sometimes those
diagnosed with EDNOS have partial syndromes of either AN or BN, mixed
features of both, or just atypical eating behaviors. Its definition is
imprecise, but
EDNOS remains the top diagnosed eating disorder in the United States – about 40-60% of all eating disorder patients. Because the EDNOS label gives very little information about a patient’s symptoms or recommended treatment,
there has been a push to revise it. Some have suggested breaking EDNOS
up into smaller, more specific categories – like binge-eating disorder,
night eating syndrome, or mixed eating disorder – and relaxing the
diagnostic criteria for AN and BN to subsume more of the EDNOS
patients. 

There
are several benefits to this proposed revision. First of all, it could
lead to a more equal treatment of people diagnosed with eating
disorders. R
ight now, because the EDNOS category is not a full-threshold eating disorder, it is often falsely considered a mild or subclinical variant. As such, most US health insurance companies won’t cover it.
But the health effects of EDNOS can be just as severe as AN or BN –
leading to osteoporosis, heart attacks, and even suicide. In fact,
EDNOS patients often have poorer physical health and higher mortality risks

than those with AN or BN. Under the current definition, two almost
identical patients, both with serious medical risks, could receive
drastically different treatments simply because one of
them failed to meet the weight cutoff for AN (and got a EDNOS diagnosis instead). Denying treatment based on such a miniscule distinction seems extremely unfair, and could be very harmful to the EDNOS patient. An expansion of the criteria for AN and BN could allow more patients to receive the treatment they need.

Secondly, the “NOS” category tends to be neglected by researchers, since it’s
seen as too ambiguous or atypical to warrant full attention. Dividing
EDNOS into specific disorders could encourage more research into
identifying symptom patterns and better treatment options for each
category. Finally, a revised definition may have beneficial
psychological effects. For some patients, receiving the EDNOS diagnosis
can make
their medical condition worse. Nicole Hawkins, director of an eating disorder clinic in Utah, told the NY Times recently
that some patients with EDNOS do not consider themselves “good” enough
at their disorder, and will resort to more extreme practices (like
losing more weight or binging more often) to “qualify” for AN or BN. An
expansion of these definitions could reduce the risk of this type of
behavior.


Despite these advantages, the proposed EDNOS revision has not gone without criticism. Dr. Allen Frances, who was in charge of the last DSM overhaul in 1994, worries about the unintended consequences of a new set of changes. Any expansion of existing criteria could create a flood of newly diagnosed patients. He points to the sudden increase in the diagnosis of autism, ADHD, and bipolar disorder
as an example of the sort of false “epidemics” that can be created by
slight definitional changes. Under a revised definition of EDNOS, he
estimates that 6% of the population would classify as having a
“clinical” eating disorder
– and there are bound
to be false positives. Not only will these masses of new patients erode
trust in the psychiatry profession itself and trivialize the
seriousness of eating disorders, they will surely attract p
harmaceutical companies, who will be all too eager to take advantage of new markets. The result will be costly treatments (such as Prozac, often prescribed to BN patients) with possible harmful side effects for patients who don’t need them. Frances warns that these new false positive patients
will “pay a high price in side effects, dollars, and stigma, not to
mention the unpredictable impact on insurability, disability, and
forensics.”

The consequences of a definition change are significant. If nothing is done, we are potentially ignoring serious cases because they fail to meet criteria,
impeding future research, and worsening the health outcomes for EDNOS
patients. On the other hand, with the new revisions we run the risk of
creating false
epidemics, subjecting people to unnecessary medication, and raising
suspicion about the trustworthiness of psychiatry. I don’t know what
the final decision will be, but as the debate rages on, it highlights
the challenge (and conundrum) in trying to define what is not otherwise
specified. In this case, a name makes a world of difference.

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