FDA ECT deadline looms

I don’t claim to understand the way electroconvulsive therapy works or doesn’t work. Despite varying theories, its medical success and failure remains mysterious. “We don’t know how it works, but we know it works” is what ECT advocates will tell you. And indeed, I’ve seen evidence of people — especially those who are catatonic — having their lives positively transformed by the treatment.

I, however, was not one of those people. I would have done it under any circumstances, due to my desperation. But there was no informed consent involved. Certainly I didn’t understand the way ECT would lastingly affect my cognitive abilities and memory. If I had to do it all over again, knowing what I know now, I would run in the other direction — even into oncoming traffic. It was a huge mistake.

Turns out, the elements of recovery that changed my life were the right doctor, a job and blessingly effective medication. No electricity or seizures needed.

The most bizarre thing about ECT is that the machines are not regulated by the FDA. I know this sounds improbable, given their potential for damage and the controversy that persists. I guess it’s like the banks: Why regulate when you can profit?

And profit they have — the makers of the ECT machines and their accessories do quite well, and are surely distressed by this period of public comment. Here’s a little background from MedPage:

In 1976, the [FDA] began requiring that new medical devices undergo a rigorous premarket approval process in which manufacturers either had to prove they were safe and effective, or show that they weren’t high-risk and therefore didn’t need such stringent review.

In this context, high-risk means that the device’s failure to function properly could lead to serious or life-threatening complications.

But companies with high-risk products already on the market were allowed to keep selling them, with the understanding that eventually the agency would require them to submit the same type of data needed for newer products.

It took nearly 20 years for the agency to begin following through.

…

In the case of electroconvulsive therapy machines, for example, there are eight companies that market the devices, none of which were ever required to undergo premarket approval.

Rather, they all were cleared under the so-called 510(k) process, which automatically okays the devices if it is “substantially equivalent” to an already approved product, called a predicate device.

Since no ECT machine went through the premarket approval process, there is no predicate device. Hence, manufacturers of ECT machines must seek approval for them as if they were new to the market.

A few days ago, Dr. John Grohol reminded readers to get motivated:

Doctors today can apply electrical impulses to your brain without having any government agency approve such treatment, despite the fact that ECT in most people results in sometimes-significant memory loss.

We wrote about FDA’s desire to review ECT treatments in April and just wanted to remind you that the FDA is seeking public comment on the use of ECT. Yes, that’s right — you can submit your comments directly to the FDA to help them understand the importance of requiring ECT devices to meet the same minimal safety and efficacy requirements made of any modern medical device or medication.

Some of the strongest proponents of ECT throughout the years were — surprise, surprise — investors or otherwise directly involved in the companies who made the ECT machines. Oops. The conflicts of interest never seem to end.

The biggest problem with ECT is that nobody can tell you whether your memory loss will just be around your ECT treatment itself, or whether you’ll lose memories of your childhood, your family, or other memories you hold dear. And while that’s a risk some people with serious, chronic depression may be willing to take, it’s a risk too often glossed over by the doctors who offer ECT treatments (for obvious reasons, as it reduces the numbers of people willing to undergo the procedure).

ECT may indeed have a place the realm of depression treatment, but it should — at minimum — have the same kinds of research studies we now require of antidepressant drugs. And of course, patients who consider undergoing ECT treatment should be fully informed of all of the risks associated with such treatment.

So the FDA is seeking information and comments that relate to the safety and effectiveness of electroconvulsive therapy (ECT) and ECT equipment, “including adverse safety or effectiveness information.” Submit written comments and information to the Division of Dockets Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Room 1061, Rockville, MD 20852. Include the Docket Number: FDA 2009-N-0392.

You can also submit electronic comments and information directly to the FDA website here and then click on, “Submit Comment.”

So get on it, people. We only have till Jan. 8, which isn’t long. If you want more information before you comment, I recommend Linda Andre’s Doctors of Deception out from Rutgers Press. It breaks it all down for you. Or go to ect.org for more info.

liz | 1:28 PM | Uncategorized

I Am Alive. Really.

I owe everyone reading this a big apology. I’ve been MIA, and thinking myself expendable, I didn’t realize I had worried people. As a person who assumes my father is dead every time I see my mother’s number show up on my caller ID, I understand worry. I just didn’t realize anyone would be worried about me. (You can worry about my dad too, if you want. But he’s actually in very good health.)

What happened is this: I got a new job and promptly became paralyzed by having too many things to do. Of course, I didn’t want to post here on work time (uh … except for now), so I thought I’d post in the evenings. Well in the evenings, I’m usually playing a computer game or reading Dickens or compulsively watching Mad Men or Dexter. So I’m busy. Or at least as busy as all that activity implies. Plus, there’s the Chihuahua and my sugar gliders and my living companion … And my dad might be dead! It’s just all so overwhelming.

Kidding aside, I have felt more socially phobic and withdrawn in the past couple months than in a while. I go through phases with this. I’m on fewer meds than ever before, which means I can’t sleep. Maybe that’s contributing to my desire to isolate. Being sleep-deprived will make anyone feel boring. Who wants to see my baggy eyes?

That thing about the meds — I’m feeling pretty psyched about it. I’ve been on Seroquel for 11 years, and I assumed I’d be taking it for the rest of my life. But guess what? I’m off of it and it’s okay. I titrated extremely slowly, so I didn’t have any rebound psychosis. And if I feel the edges start to wobble, I have a canister of leftovers. But day to day, I’m now only on three meds. I’m so pleased!

I hope you’re all doing well, and I plan to write more from now on. Someone suggested maintaining this piece of my persona was important to the agency I work for. So it’s all okay.

I’ve missed you. Let’s talk again soon.

liz | 5:11 PM | Uncategorized

Omega-3 Is Not the Bullet

A new study of heart patients suffering from depression is in itself depressing — at least if you were excited about the potential of omega-3 fatty acids to life your spirits. From the New York Times:

The patients were randomly assigned to a combination of sertraline, an anti-depressant, and either omega-3s or a corn oil placebo. After 10 weeks, there was “absolutely no difference” in depression remission rates between the 59 patients taking omega-3s and the 56 patients taking the placebo, said Robert M. Carney, lead author of the study, which appeared in the Oct. 21 issue of the Journal of the American Medical Association.

“It was very disappointing,” he said.

The trial was launched because patients with heart disease are at greater risk of dying if they are depressed, Dr. Carney said. Depressed patients are known to have low levels of omega-3s, which are a risk factor for heart disease, as well.

Now, with any study, there are multitudinous caveats. It’s a small sample. They had lower levels of omega-3s to begin with. Perhaps there were other factors (i.e., physical illness) that superseded the treatment of depression, yadda yadda.

And there has been other research to suggest omega-3s are useful for depression. USA Today broke down a different study in 2007:

The omega-3 fatty acid in some fish may be a “brain food” that helps ward off depression because it increases gray matter in three areas that tend to be smaller in people who have serious depression, a study suggests today.
The increase could help explain why past studies have found that the omega-3 acid DHA reduces symptoms of depression. The richest sources of DHA are fatty fish and fish-oil capsules.

Researchers gave magnetic resonance imaging tests to 55 adults. Participants also reported everything they ate for 24 hours on two randomly selected days, says study leader Sarah Conklin, a neuroscientist at University of Pittsburgh Medical School. She’ll report her findings at the American Psychosomatic Society meeting in Budapest.

The more DHA a person consumed, the more gray matter there was in three areas of the brain linked to mood: the amygdala, the hippocampus and the cingulate, Conklin says. Seriously depressed people tend to have less gray matter in these areas, she says.

For every yes in research, there’s a no. It’s really frustrating for people looking for answers. That’s why it’s best to just go with your gut: Try what feels right and if it works for you, great. If it doesn’t work for you, move on to something else. But remember: There is no magic bullet — oily or otherwise.

liz | 2:52 PM | alternative treatments, depression

My New Hero: Glenn Close

Not because she’s a phenomenal actor, which she is, but because she’s just initiated a new project to banish stigma. The project is highly personal, as she explains on Huffington Post:

As I’ve written and spoken about before, my sister suffers from a bipolar disorder and my nephew from schizoaffective disorder. There has, in fact, been a lot of depression and alcoholism in my family and, traditionally, no one ever spoke about it. It just wasn’t done. The stigma is toxic. And, like millions of others who live with mental illness in their families, I’ve seen what they endure: the struggle of just getting through the day, and the hurt caused every time someone casually describes someone as “crazy,” “nuts,” or “psycho”.

What’s remarkable is not her frankness about this personal history, but her motivation to act, which seems almost like a wholesale rethinking of her career and what it’s meant in popular culture. In Fatal Attraction, for example, she played a woman obsessed with Michael Douglas (those were the days, right Michael?). She loses control of the obsession and becomes terrifying. As Close writes, the movie was a great success, and audiences loved to hate her character.

Alex Forrest is considered by most people to be evil incarnate. People still come up to me saying how much she terrified them. Yet in my research into her behavior, I only ended up empathizing with her. She was a human being in great psychological pain who definitely needed meds. I consulted with several psychiatrists to better understand the “whys” of what she did and learned that she was far more dangerous to herself than to others.

The original ending of Fatal Attraction actually had Alex commit suicide. But that didn’t “test” well. Alex had terrified the audiences and they wanted her punished for it. A tortured and self-destructive Alex was too upsetting. She had to be blown away.

So, we went back and shot the now famous bathroom scene. A knife was put into Alex’s hand, making her a dangerous psychopath. When the wife shot her in self-defense, the audience was given catharsis through bloodshed — Alex’s blood. And everyone felt safe again.

The ending worked. It was thrilling and the movie was a big hit. But it sent a misleading message about the reality of mental illness.

This is a bold admission from a woman who derived so much success from this role, but there’s no escaping what she says. It has long bothered me — and, I suspect, other advocates — that the message there is one of terror and fear.

Not only does Close take on her role in that film, she assesses the entertainment industry as a whole:

Whether it is Norman Bates in Psycho, Jack Torrance in The Shining, or Kathy Bates’ portrayal of Annie Wilkes in Misery, scriptwriters invariably tell us that the mentally ill are dangerous threats who must be contained, if not destroyed. It makes for thrilling entertainment.

There are some notable exceptions, of course — Dustin Hoffman in Rainman, or Russell Crowe’s portrayal of John Nash in A Beautiful Mind. But more often than not, the movie or TV version of someone suffering from a mental disorder is a sociopath who must be stopped.

I like to think that her speaking out will change this. As she so eloquently says, silence is the problem. Read more of her elegant prose here. It is well worth it. There you’ll find links to the initiative she’s promoting.

Thank you, Glenn, for speaking out against silence. You rock.

liz | 10:30 AM | SCHIZOPHRENIA, bipolar disorder, celebrities, depression, media, meds

Guess What Today Is?

First of all, the day I finally return to doing my blog. Second, it’s the day you should do something important. What follows was sent around by Joseph Rogers of the Mental Health Association of Southeastern Pennsylvania, where I now work.

Take 5 Minutes: Call Your Senators and Rep Now!
Tell them You are Counting on Them to Deliver
All five Congressional committees of jurisdiction have passed a
healthcare reform bill. Several provisions of interest to community mental health and addiction providers have been included thus far but now, it’s crunch time: negotiations are in progress that have a direct impact on whether these provisions will remain in the bills to be voted on by the House and Senate.

Today is National Call-In Day for Health Care Reform. Take 5 minutes to call your Senators and Representative to tell them that you are counting on them to vote YES on health care reform and deliver a bill that includes comprehensive mental health and addiction benefits. Don’t postpone until later in the day: CALL NOW!

liz | 11:46 AM | Uncategorized

Maia Campbell: Setting the Record Straight

There have been technical difficulties with this blog of late, so I haven’t been able to write about poor Maia Campbell, daughter of influential writer and mental health advocate Bebe Moore Campbell, who passed away a few years ago. I paid tribute to her here.

The deal with Maia is that, after years of erratic behavior, a new video of such behavior went viral in the beginning of September. And despite her mother’s work on mental health issues because of Maia’s illness, and despite former reports of Maia’s being in the hospital for the illness, the gossip media lay the whole thing at the feet of drug use. And not sympathetically, either. TheHollywoodGossip.com put it this way:

Remember Maia Campbell? Yeah, we didn’t either. But apparently years ago she was in Tyrese’s “Lately” and “Sweet Lady” videos, and starred on LL Cool J’s sitcom In The House. As one of the main characters! She was a solid C-lister! Maia Campbell was also featured in a regular role as Nicole in the short-lived FOX series South Central, playing Larenz Tate’s girlfriend, and was on Thea.

Then she just disappeared. Well, Maia Campbell is back today. Apparently as a foul-mouthed prostitute who will do anything for drugs. Crack in particular. … Whenever it was filmed, it certainly does not portray Maia in a very flattering light, as she appears to be under the influence of narcotics such as crack.

Interesting that the first assumption people make about her erratic behavior is that it’s related to crack. Is that because she’s African-American? I believe when Britney Spears started talking with a British accent and behaving strangely (and similarly), crack didn’t enter the picture as a hypothesis.

But I digress.

It’s unfortunate that the below video was leapt upon with such vitriol and assuredness of Maia’s situation, when no one really knew a thing about what was happening with her.

Okay, so you see the people laughing at her. Very nice. The comments on the video over at YouTube are awful. The attitude online on blogs and gossip sites was pretty nasty as well, at least at first. Andrew Belonsky from Defamer (of Gawker parentage) posted the video and other facts about her and said, “Shit, man: this girl’s spouting absolute nonsense. Even her companion’s stupefied” and then went on to chronicle her criminal record. Later, he wrote: “Meanwhile, earlier this year some fans saw her sleeping on a beach and smoking meth. They say she smelled like a bum. We would laugh and point fingers, but, c’mon, this is just sad.” Hmm. Why do I get the feeling he’s not that sad? Then again, can you expect empathy from someone who writes about a woman smelling like a bum? And: Do people even understand what it means when another human being has strong bodily odors? It means they haven’t had appropriate access to sanitation resources. Don’t take your white porcelain toilets and showers for granted; you know how quickly you’ll smell like a bum if you have to live without them? I give you about three, four days. And can you imagine the feeling of having urine run down your pants leg — the grave humiliation, the hopelessness of your situation — and then have people laugh at you: “Damn, she smells like a bum!”

But I digress.

After the hostility about her situation — as well as significant concern from some genuinely kind fans — Campbell’s father and grandmother wanted to clear all the confusion, and did so by posting this on Bebe Moore Campbell’s website:

As a family, we have been struggling with Maia in her illness for quite some time. We continue to hold fast to our faith and hope that some day she will realize that healing will begin when she decides to reach out and accept the help and treatment that have been offered to her. We all have challenges in life that we must face, but when compound problems such mental illness and substance abuse are prevalent, it can appear that there is no way out. However, our sustaining faith and trust in God compels us to believe differently. We strongly believe that Maia will be healed.

We also know that Maia”s mother, the late Bebe Moore Campbell, who devoted much of her later years in life to mental health awareness and education, along with her family members and friends would welcome your prayers and support for Maia”s sustained recovery. In addition, we urge your support for efforts to diagnose and treat mental illness in our community.

We ask that you not only pray for Maia”s wellness, but also commit to understanding this insidious disease, which is devastating our loved ones and community. Help erase the “stigma” of mental illness, which is a very serious barrier to treatment, so that we can help those with the disease to live wholesome lives. Call for more treatment options and prevention strategies, have compassion for those stricken with this illness, and help guide those who have been unable to find their way to appropriate treatment. Additionally, support those families who are struggling to cope with loved ones with the disease because mental illness affects the entire family.

Finally, we ask that you support Bebe Moore Campbell National Minority Mental Health Awareness Month, which was established by Congressional Resolution, H. Con. Res. 134, in April 2008 and is celebrated during the month of July each year. It was established to enhance public awareness of mental illness, especially within minority communities. Please join us in this effort to bring attention to this problem, to identify resources and to strengthen the focus on treatment along with research relative to minorities and mental illness. This is the work that we continue on behalf of Bebe Moore Campbell.

Pretty amazing, right? Very powerful message. Something good is coming from this, after all. And the best of all, at least for now, is from the Daily News‘ Dan Gross:

FINALLY, SOME good news in the ongoing saga of Maia Campbell, the long-troubled actress whose drug use and bipolar disorder have kept her off television and made her the subject of Internet ridicule.

Campbell, the daughter of late author Bebe Moore Campbell, has been placed in a treatment facility, according to an interview that her father, Ellis Gordon, Jr., and her grandmother Doris C. gave to Essence.com.

I hope this is the beginning of a new journey for her, but ridicule or no, the combined demons of drug addiction and mental illness can be incredibly hard to battle. For more truthful, solid information on what are called co-occurring disorders, try the below links:

Co-Occurring Disorders: Integrated Dual Disorders Treatment [SAMHSA]

Co-Occurring Disorders [about.com]

Diagnosis Dictionary: Co-Occurring Disorders [Psychology Today]

liz | 2:45 PM | Uncategorized

Latest Video: Going Off Seroquel

The great irony of this video? Shortly after filming it, I had to resume my 100 mg dose again, which is what I’m taking now. Things got really frayed after this, but not in a depressed way, exactly — more like a psychotic way. I’m lucky in that I get to experience both and sometimes separately. Delightful! So now I’m sleeping a lot, which is good to recharge the batteries, come off the mild psychosis and deal with a pesky cold that has me producing mucus at an alarming rate. Strangely, my chihuahua is afraid of the tissue box, so every time I go for a tissue — every 3 seconds — she recoils as though I’ve just picked up a dog-beating bat (in her mind, I guess that exists).

Still, I realize that when I start working again, I’ll be able to reduce the Seroquel again to 25 mg or maybe 0 mg without much of a problem. Once I’m in a routine, I tend to do quite well. So, as those of us in recovery say every day with increasing confidence: This. Too. Shall. Pass.

liz | 2:58 PM | meds

Last-Name Conventions

Sometimes I don’t know if what I’m obsessing over is a result of the mild OCD I have or just JNS (Jewish Neurotic Syndrome) or maybe OPPPS (Overthinking to the Point of Physical Pain Syndrome). But I can’t stop mulling over the way people clarify their last-name spellings on the phone. It’s been preoccupying me for about a year now, and it shows no sign of abating.

For instance, when I was growing up and my dad needed to spell our name to someone over the phone, he’d say, “S-as-in-Sam, P-as-in-Peter, I, K, O, L.” Thus when I grew up, and to the present day, I also say that, although it’s not like Peter is a super popular name anymore. My friend Laura, whose last name begins with P, says “P as in Paul,” which is also Biblical but more au courant, and it makes more personal sense for her because her father’s name is Paul. We don’t have any Peters in my family; pishers, yes.

I’m sitting in a cafe right now, and the guy next to me just said into the phone, “No, no, the name is Rigel — like Nigel with an R.” How many times has he said that? I really want to lean over and ask how his family developed that strategy. Is he the first-generation Nigel-referencer? Or did he get it from a parent? And wouldn’t Nigel work better in England? Maybe, but then again, what are his options?

Every time I meet someone or hear their name on the radio, I think: I wonder how they handle their last name? Especially if it’s a hyphenated mess coming from someone with an accent, as you often hear on NPR.

Why can’t I stop thinking about this????

liz | 4:12 PM | random

Memorializing Larry Frankel

Larry Frankel fought the good fight for his entire professional life, and his death — a couple weeks ago at the age of 54 — is a huge loss for America. Does that sound overstated? Probably, but I really believe that. Larry was as much a crusader as Ted Kennedy, who was lionized in the wake of his recent death. Frankel didn’t get quite as much attention (understandably), but if you want to know more about him, read his obit here. That just skims the surface of his service. Honor his memory by donating to the ACLU, or by attending his memorial service this weekend. Details:

liz | 2:29 PM | celebrities

“An army of mentally ill … “

No, that’s not our merry little band, my friends. That’s a reference to the homeless population that’s apparently growing on K Street in Washington, D.C.:

“We’re seeing a lot more people now,” said Colleen McCarthy, a volunteer with Dorothy Day Catholic Worker, a nonprofit group that provides hot meals in McPherson Square every Thursday. “Many of them are the most mentally ill.”

The rise in the population may be due to the mayor’s reform agenda, which was supposed to help the homeless. In fact, he was planning to institute a Housing First program, but was unable to due to budget issues.

“If you come through here on Saturday or Sunday, it’s wall-to-wall homeless people,” said Marquietta Henley, an officer with the Downtown D.C. Business Improvement District, who was herself homeless until a few months ago.

… Councilman Jack Evans, D-Ward 2, who represents downtown Washington, defended the mayor’s approach.

“The program that the mayor has used is absolutely the right one — we should not be warehousing these people in these decrepit shelters. I’ve seen a real decrease of people out in the streets in the last two years,” he said. No matter what, Evans said, “you’re still going to have people out on the streets because they’re resistant to outside help.”

Many Washingtonians have become numb to homelessness and think little of picking their way through public parks over and around the homeless. That’s part of the problem, experts say.

“Really, homelessness has become part of the public and retail space environment, much like parking meters and vending boxes and alleyways,” Lynch said. “It’s just part of the landscape.”

Yeesh. People who are like parking meters? I’d say that’s a problem.

K Street corridor: Where homeless, business meet

liz | 3:36 PM | Uncategorized