What's wrong with science?

I'm sure I'm not the first to notice the anti-science bent in a lot of eating disorder treatment. Which baffles me: with an illness that has almost exclusively defied effective treatment, you would think sufferers, their families, and treatment providers would be desperate for something better.

While some are, some aren't.

Recovery from eating disorders is traditionally broken down into the Rule of Thirds: one-third of sufferers get well, one-third get better but still struggle, and one-third remain chronically ill. Let's face it- we can treat many cancers better than we can eating disorders. There is the National Cancer Institute, focused exclusively on cancer research, not to mention the billions of dollars invested in other research just here in the US. Aside from the fact that cancer is more common, most people get phenomenally excited when a treatment breakthrough is announced. Oncologists comb the latest research journals; so do many sufferers. Science is seen as holding the ultimate cure for cancer.

Why don't we have that attitude with eating disorders?

Both brain cancer and eating disorders are brain diseases. Of different types, yes, but they are still neuro-based illnesses. Does the existence of a tumor make it easier to believe in the science? Or are eating disorders somehow special?

One of the more recent criticisms of evidence-based treatment is that it implies a right/wrong way of doing things. And while I understand how it could be seen that way, I don't think it really is. The only evidence-based treatment is the Family-based Mausdley approach, used for adolescents with both anorexia and bulimia. And while I believe it should be the first-line approach in treating eating disorders, it's not the only option, nor has it been advertised as such. It's just the only option with the science and data to back up its claims of effectiveness.

In her post (the link at the beginning of the last paragraph), McShane says that parents often don't know what evidence based treatment is, that the words are bandied about like some magic catchphrase. Which may or may not be true, but I hope she understands this: parents searching for evidence-based treatment simply want the best chances for getting their loved one well as soon as possible.

Some families can't make Maudsley work. For others, it's not appropriate. That's where you go into a second-line treatment. One day, we will have evidence for that, too. Right now, we don't. And the lack of other good treatments does make evidence-based treatment for eating disorders seem a bit either/or, simply because we don't have any other good options to present people with.

Recovering without using evidence-based treatments doesn't inherently weaken your recovery. But you wouldn't want a cancer treatment that has never been researched, so why would you want an eating disorder treatment without research?

I don't get it. I was trained as a scientist, which perhaps explains some of my bias. If a treatment really works, and you hold it up to the light of science, then it should still work. Experiments and data and studies do NOTHING to change the treatment itself. Why are people so threatened by evidence-based treatment? It doesn't mean that treatment can't be tailored to the individual; in fact, you could potentially argue that FBT is the ultimate in individualized care, as the caregivers know their child the best and can accommodate his/her needs better than an IP program that often has blanket rules and guidelines.

Rather than being one-treatment-forever-and-ever, the search for evidence-based treatments opens the door to a range of new possibilities, ones that may work even better than what we have now. It's a way to move forward. And when (not if, when!) new evidence-based treatments arise, we can reevaluate and see whether we should be sticking with what we've got or moving on.

Yes, I know people who have recovered using "traditional" psychotherapy, and I have no major issue with psychotherapy itself. Seriously. I don't. Yet despite all of those people I know who have recovered with psychotherapy, I know so many more who remain ill, or whose recoveries were delayed by ineffective treatment.

Certainly, a lot of recovered sufferers attribute their recoveries to therapy. And I don't doubt the truth of their statements and experiences. But unless we get a lot of sufferers together and have them undergo the same type of therapy (whether it's talk therapy, or CBT or DBT) and then measure the outcomes, we won't know whether the therapy actually worked or whether it was a coincidence. Did the person happen to be in the right place at the right time?

"Confronted with huge, uncontrollable forces, we tend to fall back on magical thinking. Say a goat was sacrificed on the volcano rim last year and lava did not engulf the village. It must follow that this year some poor goat is doomed," writes Constance Casey in an article titled "The benefits of evidence-based gardening," in today's Slate. If you read the article and think of gardening in terms of eating disorders, I think Casey hits many of my points.

I think we need to ask ourselves: why are eating disorders being treated the way they are? Is it because we know this actually works? Or is it more like an Old Wives' Tale, doing something the way it's always been done. Believing based on anecdote. Which doesn't strike me as a very good way to believe something. Current treatment seems to be based on crisis management: do a lot of talking about "issues," hit a crisis, go inpatient, and repeat. There MUST be something better than this.

We don't treat any other illness this way, the one exception being autism. Another disease about which we know very little and into which step the snake oil salesmen and anti-science activists.

Again, I'm not saying this to negate anyone's experiences. I believe in the importance of narrating your own life, your own recovery. But just because something gives you the warm fuzzies, or even feelings of empowerment, doesn't mean that it's the best way to treat an eating disorder.

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12 comments:

Jane said...

I <3 this post!

Carrie Arnold said...

And I <3 you, Jane. :)

Cammy said...

Amen.

Tiptoe said...

Great post, Carrie! You're so right that there seems to be lackluster movement in really finding effective therapies for EDs. I wish I had the answers for this. Maybe with time and impassioned researchers, it will get there.

I think for now, many of the clinicians do tend to go by how they're trained, what's been done before, etc. without asking the real hard hitting questions of what *effective* treatment really is. Maybe we need to look at more prevention type approaches as well.

Less Than Anonymous said...

I really cannot get into jut how much i love this post, honestly you've managed to cover so much and get your point across while still remaining seemingly unbiased. I agree with you completely that FBT is potentially the best treatment out there, but something that sometimes gets a little overlooked is the strained relationships between families that have had "issues" even before one members disorder. I hope someday there is some sort of way to take the main points from FBT and work them into a more team centered thing for patients who don't have the family to go back to, and for people who do need to be 're-parented',


:D

but yeahs, I so adore this

Harriet said...

Well put, Carrie!

Laura Collins said...

I would like to have this post issued as the first day lesson for every single clinician who might encounter an ED patient, the first information sheet given to parents on the day of a child's diagnosis, and to every press release about eating disorders.

Thank you for this, Carrie.

sannanina said...

Actually, I think that the problem of not taking the science into account when it comes to treament is not just common in ED treament but in the treament of mental disorders in general. For example, antidepressants are nowadays more often used to treat depression than psychotherapy - and this although some studies have shown that psychotherapy is just as effective (i.e., both therapies help approximately the same percentage of people) and that it has the added advantage of having a maintenance effect. (People who have been in psychotherapy are less likely to have a new depressive episode while this is not true for antidepressant medication - antidepressants stop working when you stop taking them; a person who has been on antidepressants in the past is just as likely or even more likely to have another depressive episode than someone who never has been on antidepressants). I am not saying that medication is never the right choice - which therapy is right clearly depends on the individual (and there should be more research on which factors influence what treamtment will benefit a person), but still, the preference for medication is not based on science. Also, a lot of physicians, even psychiatrists, have a favorite medication which they tend to prescribe, something which is again rarely based on science.

But it doesn't stop there. Quite a few theories underlying working forms of psychotherapy are not really reflecting the evidence. For example, the classic form of cognitive therapy, which is quite effective for depression, is based on the idea that negative emotions are based on negative thoughts. My last therapist was actually very insistent that every emotion is preceded by a thought and that it is possible to become consciously aware of that thought and change it to a more funciontal one. To be fair, cognitive reappraisal often does help with depression. But the evidence actually shows that emotions can arise subconsciously, and subconsciously means here that it is impossible to become directly aware of the underlying cognitive processes.

The problem about a working treatment being based on a faulty theory is that it becomes very hard to find out a) for whom and why the treament sometimes does not work and b) to modify the treatment in order to make it better in general or in order to make it work for people it did not work for before. This is not only true for psychotherapy but for all kinds of treatment for mental disorders.

Carrie Arnold said...

LTA,

Most families have issues before the ED because ALL families have issues before an ED strikes. A good clinician will be able to sort out the pathological (parents disabled by their own mental illness, perhaps, or ones where abuse/neglect is present) and those that are just quirky.

Sannanina,

The therapy/medication issue for depression is (in the US at least) as much about insurance as it is anything. Insurance will pay for anti-depressants. They typically put tight caps on therapy. And many PCPs aren't reimbursed enough to discuss complex issues like therapy/meds/both with their patients during a 15 minute appointment, during which there are likely to be other concerns.

The rest of your points are very interesting, and very valid. Thank you for always joining me for a good discussion!

And thanks to everyone!

sannanina said...

Carrie - fair point on the medication. My comment was colored by personal experience, I guess. A few years back (when I actually saw a wonderful psychologist who was a student counselor at my college) I went to see a psychiatrist about medication for my depression. I was reluctant to try medication once more since it no medication had helped in the past. However, because of the situation I was willing to try once more. The psychiatrist outright refused to treat me as long as I was working with any kind of psychological counselor or psychotherapist - according to him the only valid treatment for depression was medication.

I have to admit that I have become very distrusting of people who work in the mental health field. I truly believe that most of them want to help their clients/patients. However, I have experienced so many times that I was given wrong information or that information (for example about side and discontinuation effects of drugs) was withheld from me even when I confronted the respective person with information I had researched on my own that I find it extremely hard to rely on a clinicians judgment. The fact that I have been treated repeatedly as completely unknowledgeable (and sometimes outright stupid) despite my own life science and psychology background actually further contributes to this.

Carrie Arnold said...

S,

I am very sorry you have had those experiences. And though I haven't had the exact same situations as you, I also have been disillusioned with medical professionals. For me, it was more emergency and urgent care physicians.

I find it disturbing that these experiences seem almost universal in people suffering from mental health issues.

Sad Mom said...

I came here looking for sanity this morning, my son is not improving at all, I'm very discouraged, and the morning opinion page did nothing to help. Thank you for your piece.

The first is a student in my own department, I'm not faculty so can't say anything but I do want to slap her a good one. She is, I'm sure, well-intentioned but stupid.

The second is much, much better.

http://www.nhregister.com/opinion/

'Fat tax' would encourage consumption of healthful foods
Wed. Dec 3, 2008, 6:20am

WHEN I attended grade school, I remember there was a single overweight boy in our class, who was known as the fat kid. Nowadays, a shift in the average size and weight of children may mean there might not be just one fat kid in class. Nearly 20 percent of children in the United States ages 6-11 are overweight, an increase of 45 percent since the 1980s. Read Story

Time to confront the effrontery of the food fascists
Wed. Dec 3, 2008, 6:20am

LAST week, I gave a talk before a local theater's production of Neil LaBute's play "Fat Pig." The play revolves around a workplace romance between a conventionally attractive (read: slim) man and a fat woman. Read Story

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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