February 07, 2006

More From the STEP-BD Study

As I mentioned the other day, important information from the STEP-BD study came out Feb. 1 via two papers published in the American Journal of Psychiatry. The study has important implications for bipolars. I just wish I could figure out what they were. That's only partly a joke.

The basic story is that STEP-BD (go look up the acronym 'cuz I am not typing that kluge out) was funded by NIMH and looked at how patients with bipolar disorder (I and II and a few NOSers) responded to "guideline-based treatment." The study lasted over five years. Four thousand-plus patients were tracked two years at a time. Although the main paper here doesn't delineate which meds were used and rate them against one another, NIMH has said elsewhere that the study was principally focused on the use of mood stabilizers and anti-depressants with some use of atypical antipsychotics. The study also allowed the use of psychosocial treatments, i.e., talk therapy and cognitive behavioral therapy.

In the last couple of years, there have been several interim reports from the STEP-BD study. But in "Predictors of Recurrence in Bipolar Disorder: Primary Outcomes from STEP-BD," the main paper to which I referred, researchers make their first global statements about just how often patients relapse/have symptoms return and how often patients recover/have symptoms remit. Which is to say that it provides a good picture of outcomes for patients over time. That's what matters, right?

The news isn't great for current guideline-based practices. Here are some excerpts from the study:

"Only slightly more than half of the participants (58.5 percent) who were symptomatic at study entry achieved recovery during up to two years of follow-up. Furthermore, 48.5 percent of the participants experienced recurrence during up to two years of follow-up."

Recovery is defined by the study as two or fewer syndromal symptoms of mania, hypomania or depression being present for at least 8 weeks. As you know, those three aspects of bipolar have many symptoms, but having only two of them qualifies you as recovered (meaning you are still sub-syndromal and having serious problems but you are vastly more stable than during an episode). Recurrence, or relapse if you prefer, meant that a patient had an episode that hit each symptom of mania, hypomania or depression.

It's discouraging, but not surprising to regular readers, that about half the patients in this 858-patient study group did OK and about half didn't. That just further strengthens the argument I've been making in recent months that psych meds work about half the time. It also backs my assertion that for researchers to claim that complete symptom remission is possible is spreading false hope and to make total remission a polestar of the psychopharmacological paradigm is to chase a false god. When Pharma companies make similar claims, their propaganda approaches criminality. Both groups need to be held to higher standards of honesty and accuracy in their public and marketing pronouncements. More:

"Over 90 percent of patients with bipolar disorder experience recurrences during their lifetimes."

That is the wall patients are up against. You get better, you get worse, you get better, you get worse all over again--and that's just the way it is. Researchers are often deeply dishonest about this fact. Pharma companies are downright liars on the matter. So why is it that both groups, plus the national advocacy groups, spend so much time touting "guideline-based treatments" (i.e., psych meds) to the exclusion of literally everything else? Why is it that every time a state Legislature or Congress hears testimony on mental illness the drumbeat is for meds, meds, meds? Is it because that's "state of the art" and the only game in town? Or is everyone afraid to admit the uncomfortable truth that things aren't working as well as anyone would like? I guess it's kind of hard to walk up to a politician and ask them for X dollars and then tell them it's not going to work really well. But still....

What if someone read the following assessment from the paper at a Congressional hearing?


"These results demonstrate that mood episodes in bipolar disorder, and particularly depressive episodes, are prevalent and likely to recur in spite of guideline-based treatments....The finding that nearly half of study participants nonetheless suffered at least one recurrence during follow-up highlights the need for development of new interventions in bipolar disorder."

I am glad the paper's authors are being honest in the AJP. I am confused as to why some of them go back to slinging deeply skewed assertions in media aimed at the general public:

"They [patients] want to know the chance they'll get well. The chances are excellent." So said Gary Sachs, one the paper's authors and a "leading" researcher on bipolar disorder in a UPI wire story. Um, sure, Gary. Or maybe the reporter got it wrong (doubtful with a wire service).

I don't count a 50 percent chance at a "recovery" that lasts 8 weeks and still includes symptoms and full-blown recurrences as an "excellent" chance of getting well. Statistically, that's no better than flipping a coin and, honestly represented, is pretty damn ho-hum. But then researchers like Sachs are dependent for their funding on Pharma companies and policy makers, so they've got to keep everything positive when speaking to the media. When it comes to disinformation, they make the Pentagon look like children and the media look like suckers.

By the way, there is no discussion whatsoever in the paper of side-effects of guideline-based treatments. And it's side effects that make getting to that 50 percent "recovery" rate kind of dicey.

So what new interventions do the paper's authors recommend? None. As I mentioned earlier, the STEP-BD study isn't primarily focused on atypicals, which docs have been leaning on very hard the last few years, but after the study design was arrived at in the late-90s. But, then, we know atypicals aren't working so well either--and the side effects can be even dicier than with mood stabilizers and anti-depressants.

So what's a patient to do in this sea of mediocre performance and half-honesty? That's for another day.

Posted by Philip Dawdy at February 7, 2006 12:05 AM
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Comments

nice post. The good news is we have the study. My question is why did it take so long? And the answer is, it doesn't matter. The scientists are interpreting the data. Let's hope they discover something, find a treatment that works and not a half ass treatment. And let's hope it doesn't take 20 years. In the meantime patients need to step up. In a big way. Take control. I have. It's my body, my life, my money, my brain, my everything. I'm one of the lucky ones. I have a warm bed and a cat who loves me most days. I have a family trying to understand...I am educating them. I found a creative outlet... my work. I'm able to get up and go to work. I'm not spinning out of control anymore. It took a long time to get here and I lost many years to the illness. Although the struggles made me stronger and I have no regrets, I wish better for our future generations. I also know until we have a treatment that works- the dark place is right around the corner.

We need to ask the questions that need to be asked. Be bold with the docs. And eventually someday question the pharma companies, insurance companies, etc. It's our responsibility. Right now we are letting them get by with meds that work 50% of the time. And yes, the side effects. A huge problem. 40 pound weight gain on Seroquel- sleeping through the alarm- living life in a constant fog. What kind of life is that? It's depressing. The side effects lead to depression. And me going for a swim with dolphins will not cure that. Getting married isn't going to cure it. Getting rich ain't gonna do it either. Exercise and diet will help- but no, it will not make it go away. Until the patients demand more, step up and say- no, this isn't good enough- this is the research we will continue to see. And these are the solutions society will toss our way.

Posted by: kim at February 7, 2006 09:27 AM

I totally support guide-lined based treatment. It sounds like a very productive idea, and they are very courageous in taking a stab in the dark pertaining to BiPolar Illness.

It is one of my most complicated psychological conditions and needs the utmost attentivness. Regarding both to the medication aspect and the mental recovery aspect.

I didnt agree with a few items such as,

"Over 90 percent of patients with bipolar disorder experience recurrences during their lifetimes."

That is not true at all. If they mean by recurrence just naturally happens. That is not the case. A recurrence is occured when something triggers it,

1. Lack of medication.

2. A stimulant of some kind can cause it

3. Alcohol abuse or drug abuse.

4. Being sleep deprived can cause it.

5. And something a little big more natural, even stress can cause it.

So if they mean by recurrence that falls under any of these triggers, then yes I would agree to that quote. But I dont beileve that 90 percent will have a recurrence again. My grandpa has been on meds for about 50 years and never had any recurrences.

"That is the wall patients are up against. You get better, you get worse, you get better, you get worse all over again--and that's just the way it is. Researchers are often deeply dishonest about this fact."

I totally agree people who do not have the illness, havent experienced it, can never truly know what it feels like to be the sad and happy clown.

I hope this project goes well! It seems more and more this illness is becoming more well known, which I am eternally grateful for.

Posted by: Josh R at February 7, 2006 12:19 PM

As someone's who has suffered from depressive episodes (post-natal etc.), I just want to give my two cents worth about the importance of B vitamins, fish oil, standardized St. John's Wort extract, and regular exercise. WBR LeoP

Posted by: Health man at March 9, 2007 04:13 PM

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