Monday, March 15, 2010

The People’s DSM: My Alternative Depression Diagnosis - Part I


If you want anything done right, you have to do it yourself. With the DSM-5 task force and its various work groups and study groups a virtual walking and talking “How many psychiatrists does it take to change a light bulb?” joke, it is time for me to take matters into my own hands.

Following is a very rough draft to the first installment of “The People’s DSM,” which I am dedicating to the pioneering spirit of Robert Spitzer and those who worked with him on the ground-breaking DSM-III of 1980. Spitzer and company essentially ripped up the DSM-II and started over. Something the DSM-5 people should have done to the DSM-IV.

Something I’m doing right now. But I need your help. Please give me your feedback and suggestions and we’ll keep reworking it together till we get it right. On with the show ...

Mood Disorders
Depression


Introduction

The current depression diagnosis, with its antiquated symptom checklist, does not adequately account for extreme variations in emotions, thoughts, and behavior. Below are six domains to depression (such as emotion and thinking), each domain arranged in two complementary pairs, each pair with contrasting characteristics (symptoms or sets of symptoms).

These six domains would replace the symptom checklist.

For the Alternative Depression Diagnosis, clinicians need to check at least one characteristic from each domain. All four characteristics from a particular domain may be checked, even if they are opposite. As opposed to the previous DSM, this is not an exercise in symptom counting. More symptoms do not equate to a more severe depression.

Rather, this is an exercise in spotting symptom (characteristic) patterns and anomalies. Clustering of certain characteristics tends to resolve into one of two types of contrasting depressions: “Vegetative” and “Agitated”. There is also an intermediate “Mixed” depression.

All three may be called depression, but they are likely to demand entirely different and extremely subtle treatment and therapeutic approaches, as if they were different diseases. Current diagnostic practice does not encourage this.

A final note: Suicidal ideation is not included as a characteristic (symptom) here. This will be dealt with in a future installment.

Depressive states (all of the below must be met):

  1. Must last most of the day for two weeks or more, with no apparent sign of improvement.
  2. Must be a significant departure from baseline condition.
  3. Must significantly impair ability to work, relate to others, and enjoy life.
Domains (at least one from each of six):

A. Emotion (Too Much Feeling or Too Little):
  1. Subject may feel overwhelmed, and express intense sadness or anger.
  2. Subject may experience emotional numbness, such as loss of pleasure, inability to grieve, or feel motivated.
  3. Subject may experience excessive guilt or irrationally worry about one’s self or others.
  4. Subject may lack the capacity to feel guilt or display concern for one’s self or others.
B. Perception and Sense of Self (Wholly Negative or Some Positives):
  1. Subject may experience exaggerated worthlessness, feel deserving of his or her fate, and undeserving of a better personal situation.
  2. Subject may experience a sense of exaggerated bad luck, feel undeserving of his or her fate, and deserving of a better personal situation.
  3. Subject may view events in a negative light, discount good news, and see one’s personal situation as hopeless.
  4. Subject may view events in a temporarily positive light, react to good news, and may see ahead to the possibility of one’s personal situation improving.
C. Thinking (Overthinking or Underthinking):
  1. Subject may obsessively ruminate on destructive or self-defeating thoughts.
  2. Subject may report difficulty concentrating or trying to plan ahead.
  3. Subject may exhibit difficultly in processing routine mental tasks, such as remembering a phone number.
  4. Subject may experience anxious or racing thoughts.
D. Behavior (Wholly Passive or Some Active):
  1. Subject may experience difficulty engaging in routine tasks (such as keeping appointments or personal hygiene), pleasurable activities (such as hobbies), and relating to others (as if a fish out of water).
  2. Subject may engage inappropriately in routine tasks (such as messing up an easy  assignment), pleasurable activities (such as drug or alcohol use or reckless behavior), and relating to others (such as being argumentative and confrontational). 
  3. Subject may passively withdraw from social contact and isolate.
  4. Subject may aggressively withdraw from social contact and withhold his or her companionship.
E. Mental (Speeded Up or Slowed Down):
  1. Subject may experience a deadening of the senses (such as loss of sex drive or inability to taste food).
  2. Subject may experience a heightened sensitivity to unpleasant sensations (such as the sound of a person’s voice).
  3. Subject may experience a subjective slowing of the brain (such as a feeling of being dead).
  4. Subject may experience persistent psychic pain (such as a feeling of wanting to crawl out of one’s skin). 
F. Physical (High or Low):
  1. Subject may display nervous energy (such as pacing and inability to sleep or not eating).
  2. Subject may display loss of energy (such as psychomotor slowing, fatigue, need to sleep, or overeating).
  3. Subject may experience unexplained pain.
  4. Subject may feel beyond the ability to feel physical pain.

***

Depressive types

Vegetative depression (subject leans toward most of the following):

Too little emotion, Negative Perception, Tendency to underthink, Passive behavior, Slowed down mental state, and is Physically low. 

Agitated depression (subject leans toward most of the following):


Too much emotion, Some positives in perception, Tends to overthink, Some active behavior, Some speeded up mental states, Some physical heightening.

Mixed depression (subject displays roughly equal vegetative and agitated qualities)


***

Vegetative, agitated, and mixed depressions may bear a relationship. A subject may present first with agitation, as if struggling against his condition, then give in to a vegetative depression. Conversely, an agitated depression may signal progress from a vegetative state toward remission or a worsening of one’s condition.

Final Word (for now)


Replacing the classic symptom checklist helps address some major concerns, namely:
  • “Male” traits are mentioned for the first time, such as anger, drug use, confrontation, and aggression (along with “female” traits such as rumination), which should help redress the gender imbalance in the depression diagnosis.
  • It helps identify the subject’s predominant state of mind (other than just “depression”), as well as other states, which gives clinicians and patients something to work with.
  • It acknowledges the complexity of depression and its infinite variations.
In addition, the vegetated/agitated distinction eliminates the current and confusing melancholic/atypical depression distinction. It also accounts for the “pleomorphic” nature of depression, where symptoms (characteristics) may present differently from depression to depression or even within the same depression.

Two important first principles: No two depressions are alike. Depressions cannot be treated as if they are all the same. The current DSM discourages both clinicians and patients from thinking this way. The People’s DSM is offered as an antidote to this practice.

***

This is a lot more to come to my alternative depression diagnosis, including chronicity, cycling, severity, dimensional concerns (such as anxiety, mania and temperament), suicidality, and relationship to stress. Stay tuned. In the meantime, your feedback is strongly encouraged. Fire away ...

14 comments:

Gledwood said...

I was depressed for years and believed in my heart that I was well! Why? Part of it had to do with every time I had a bash at internet self help I came across those endlessly repeated DSM criteria ~ which mean nothing to someone who's been in a low for two years or more. By that time I had lost all sense of proportion and what was "normal" to me. It was only when the depression returned about 3 months ago that I realized I DID have all the symptoms ~ I had just lost perspective over time. Thankfully they're lifting now ;->...

Anonymous said...

I think you're really on to something here John! I have felt like a square peg that didn't quite fit perfectly anywhere. You are right that the TYPE of depression is directly linked to appropriate treatment types and options. Your suggestion would much more closely define a person's actual condition. Diagnosing someone simply as "depressed" is as vague as it would be to diagnose someone with "an infection" or "a heart condition"....what kind? If a doctor is going to treat this person successfully, it is imperative to determine the type of depression and quite honestly, it is helpful to the patient as well.

Had more questions been asked when I was diagnosed, I might have been given the proper diagnosis and not been sent into a hypomania due to being prescribed only an antidepressant and not a mood stabilizer for what turned out to be Bipolar I and not the vague diagnosis of "depression". Thank you John for your efforts. Your work is truly appreciated! - Tiffany

John McManamy said...

Hey, Tiffany. I really appreciate your comment. I love the feedback I get here, but I do run into a problem that is no bad reflection on anyone, namely:

People tend to respond quickly when I hit upon hot-button issues such as stigma or something in the news or something weird that happened to me. My "think" pieces, on the other hand, tend to see comments rolling in slowly.

This think piece is obviously no exception. But I badly need feedback, as this will guide me in future pieces. The topic is way too important not to have everyone involved. So I'm glad you jumped in and I'm looking forward to more readers joining the conversation.

Now to your comments: Yes, I too was misdiagnosed with unipolar depression and given an antidepressant that had me bouncing off the walls. You hit it right on the money: In physical illness, an MD would never diagnose a patient with "infection." Imagine House doing that. Yet, on an episode, he did diagnose depression.

Please keep contributing. We badly need this conversation.

Anonymous said...

This was very helpful. It made me see that my depression has just "morphed" from one type and domain to another as I've aged. Used to be agitated, now vegetative -- I blame hormone shifts of menapause. Back to the drawing board I guess.... Thank you for your posts on this.

John McManamy said...

Hi, Anonymous. Your timing is perfect. I am putting together Part II to my alternative depression diagnosis right now. I was a debating with myself whether to include a "morph" specifier. Your comment convinced me.

Readers, please share your experiences and suggestions. Does the alternative diagnosis resonate with your own experiences? Are there things I left out or got wrong or could use clarification?

Keep the comments coming.

Willa Goodfellow said...

Four years ago my psychiatrist said that someday we would identify maybe six different kinds of depression. But she was looking for the brain studies, because "[she didn't] do relationships. [She] treats psychological problems with pharmacology." And here is where the DSM matters -- even though psychiatrists give lip service to "The DSM is not a treatment manual..." notwithstanding her beliefs about diagnosis, she went on to recommend a 5th serotonin reuptake inhibitor.

Ronald Pies recently commented on my blog, and drew my attention to an article written by him and Sidney Zisook (on the bereavement exclusion). At the end of their article say said, ""Finally, we believe it is time for the DSM to look more carefully at phenomenology—the contents of the patient’s felt experience—rather than relying almost entirely on behavioral and symptomatic check-lists" But then he is one of those psychiatrists who still believes in the fifty minute hour.

Both, in differing ways, acknowledge the inadequacy of the nine symptom checklist, and Dr. Pies wants them all to strive for a practice that examines the kinds of things that you are describing. (I told him that patients all earnestly desire that experience, but we aren't holding our breaths.)

I like where you are going with this. Among the "states" criteria, #2 addresses the personality/disease issue, though it leaves out Dysthymic Disorder. #3 seems to me the logical place to address severity. Suicidality, I presume, would also fit under a consideration of severity?

As we both have said, clinicians have long recognized that the nine symptom list falls short. What a waste of years and promise!

lcmc said...

I agree with Anonymous. My depression has definitely morphed. But unlike her it is not just based on age. Along with my husband, I have been parenting 2 daughters, who are 6 years apart, who have dealt with depression and severe anxiety from the age of 12 and up. We've dealt with this for the last 8 years and are looking at another 5 years before the second daughter will graduate from high school.

My depression has morphed so many times that I have at times decided that I have no ability to either understand my own mind or emotions. I have experienced periods of all of the above domains and types except for suicidal ideation. Although I have, at just one point, thought "If I was in heaven it wouldn't be so hard anymore."

Both my daughter's have had erratic menses along with debilitating cramps and some migraines. They haven't been treated for these with hormones because it usually makes girls even more unstable when they have depression and severe anxiety. I don't feel that age and hormonal factors have been dealt with satisfactorily in either the medical or mental health communities.

I have watched my daughters' depression morph back and forth for years. Sometimes it seems that as soon as we deal with one type of domain or type we have a period of calm before it morphs into another. Depending on not only their emotional, hormonal, social, and situational factors, but my own mental health and situational changes and stresses.

I also think that parenting as a factor is left out too much. My youngest was hospitalized because of suicidal ideation. I approached several of the staff for information I could take home and use, as a parent, that would help give me concrete parenting skills to use at home with a depressed child on a day to day basis. The only responses I got were "We get asked that a lot.", "No, we don't have anything on paper to give you." or "Read Dr. Phil's parenting book."

My youngest also has been sexually abused and diagnosed with PTSD. This is also an area where help with depression combined with other mental illnesses is lacking in parenting skills help, as far as I can see. I only find books on individuals' stories or books that sound like they are for those with a PHD.

Sorry to get so off the subject.
Lisa

Anonymous said...

Great that you're doing this, John. A rough draft, but already a huge improvement over the check lists!

Specific suggestions:
in B, something about the impostor syndrome. For years, I ignored the symptoms (almost all in your domains), maintaining a 'front' of confident competence... apparently quite well. But every bit of praise, of reward, etc. just made me feel worse. You're in the ballpark with your comments about feeling 'deserving', but I think more specificity would help.

in C, compromised executive functions. One of the most frustrating aspects of my illness is the inability to make even simple decisions. Shopping is a nightmare. Just what kind of shampoo do I need?

in C, something about the inability to multitask, related, I think, to a susceptibility to over-stimulation. I still find that I cannot concentrate on a conversation while the TV is on. Two people speaking at once confuses my brain. Going to a mall (music, bright lights, things everywhere, people, etc.) is torture.

Hope this is helpful,
Kate

John McManamy said...

Hi, Lisa. Many thanks for the morphing feedback and the reminder I need to pay attention to the trauma issues, which I'm looking forward to addressing in Part III.

John McManamy said...

Hi, Kate. This is very helpful. I was thinking I needed more in the executive (dys)function area, and you reinforced this. Also, the impostor angle is well worth addressing. I tried to avoid the standard DSM "observable by others" for this very reason, as we excel at wearing the mask, but I need to go farther.

And the multi-task thing I think is related to overstimulation or a sense of being over-whelmed - too much thought, feeling, and senses coming in, too little executive function to process it. This applies accross the board to just about all mental illnesses, so I need to come up with a way to make this specific to depression. Maybe you can help me out.

Readers: Please keep the comments coming. As you can see, I really value your feedback, to please overwhelm me.

John McManamy said...

Hey, Willa. You posted this before I got my second installment up. And for some reason your post got delayed (no email notification - I found it going into my dashboard, a Blogger glitch).

Anyway: Part II gets to severity, and I look forward to your comments on this. The threshold is "moderate," higher than for dysthymia, which I would eliminate. This is basically the walking wounded, very much depressed and functionally hanging on by a thread. Functionality falls apart with "severe" and is lost completely with "very severe."

I originally had suicidality with severity, then I moved it to my specifiers. I'm probably splitting hairs, but to me suicidality is not a symptom - it's a result of symptoms.

Re the domains - yep, one from every domain, all domains. This should be interesting. You're right - I may not be able to hold the line empirically, but my starting point is if you don't have at least one from all six then you don't have depression.

Think about it: How can you have depression if your mental state is not off? your emotions? your thinking? your perceptions? your physical state? your behavior?

Now if I were to use the logic of the DSM, I'd say, OK, make it 4 out of six. And then we're back to playing a counting game instead of spot the pattern.

No more DSM counting exercises. I've staked out 6 domains common to our experience. Let's figure out what's going on in each of the six, then see how the various characteristics all connect, then we can spot patterns and see what's really going on.

Also, in a counting exercise, a lazy clinician would settle for 4 of 6. 6 of 6 forces the clinician to dig deeper.

And of course I would never disappoint you. Part II not only gets into cycling, but "pleomorphism," as well. :)

David K said...

John, this is impressive. Are you going to write diagnostic criteria for hundreds of disorders? Daunting.

I agree with the comments from Willa and Kate. You might consider a physical descriptive to address somatic changes (posture, movement, lethargy, pain, recurrence/occurrence of chronic physical conditions) in addition to your behavioral descriptions within the physical domain. Also, sexual behavior might deserve mention. Finally, a concern regarding gender-defined behaviors/traits/domains: Gender is dichotomized in our culture but may have as many as 8 different component multidimensional scales (from the genetic, epigenetic, chemical, hormonal, etc. to the culturally perceived identity). Sexual orientation (which has nothing to do with gender identity, but with which there's often much confused babble) adds yet another dimension. An example, for clarity: so-called "hypersexual" behavior may be difficult for a male heterosexual (a male with a gate-keeping female), but could be a daily, normal activity for a gay male (2 physically oriented males), in large part because of culturally determined gender norms, not because of actual gender/sex, nor as a symptom of a neurological disorder.

Also, baseline determinations on all domains needs to be re-evaluated/restructured. Most mental health care providers see people at times of crisis when first being diagnosed, but there are never questions regarding non-symptomatic behaviors/perceptions at that time. Only in long-term care (weekly/monthly psychiatry sessions, say) does the provider get a sense of what is "baseline." So, I'd recommend the use of inventories for norming the diagnostic criteria.

Otherwise, you're scribing beautifully, and in the face of a great deal of professional opposition, but with the wind of consumer support at your back.

John McManamy said...

Many thanks, David. I'm going to stick to what I know - mood disorders - and start recruiting others to contribute what they know. Consider this an invitation to contribute.

You've given me a lot to think about, here. Talk soon -

Anonymous said...

Oh thank God for your insight. My daughter, 20, is bipolar but the depression list strikes true. You make it so simple to understand. Keep working to demystify the whole thing for all of us, friends and family!