I’m very sad this week because Vic Chesnutt, an amazing musician who faced down demonic depression for years, took his own life — finally. He’d tried it several times, and in fact wrote about his romance with suicide in a song called “Flirted With It All My Life.” Though he had new albums out and was supposedly looking forward, when I heard his recent interview with Terry Gross, I had an awful thought: “This man will die by his own hand.” I just didn’t expect it to be so soon. He was such an amazing poet and thinker and dreamer and grouch.
Vic Chesnutt’s Last Song: Folk-Rocker Dead at 45 [Village Voice]
liz | 12:06 PM | Uncategorized
If you haven’t heard of investigative reporter Anas Aremeyaw Anas, that’s a shame. I hadn’t heard of him either until Joe sent me a link to his latest expose on an inpatient facility in Accra, Ghana. It’s unbelievable, though Ghana has an appalling history in its treatment of the mentally challenged and regularly chains people who are mentally ill.
President Barack Obama praised Aremeyaw Anas, a Ghanaian journalist with a paper called the New Crusading Guide, who worked undercover for eight months, risking his life, to expose a child trafficking ring. The evidence he amassed led to the prosecution of traffickers accused of sending Ghanaian girls to Europe for prostitution.
On his first presidential trip to sub-Saharan Africa, President Obama boosted the Ghanaian investigative reporter profile. He went undercover to break stories about human trafficking, Obama cited the “courageous journalist” as an example of what democracies that respect a free press can produce.
Anas Aremeyaw Anas was named among this year’s CNN/Multichoice African Journalists of the Year Awards finalists for 2009. Anas was the only Ghanaian among 25 finalists from 12 countries.
Okay, so that tells you a little bit about his courage and determination. Now, on to the story:
It is a sad and sorry sight of unimaginable human suffering; of bright lives, powerful brawns and brilliant brains badly bruised and blighted by disease. It is a tale full of terrible and tragic oddities.
The Accra Psychiatric Hospital (Asylum Down), Ghana’s leading psychiatric treatment centre is haemorrhaging from serious administrative, operational and ethical lapses that have seen patients living in subhuman and monstrous conditions.
One inmate is eating from the upturned bottom of a dirty rubber bowl, rather than from the inside. …. Leaning against a wall in another corner, a youthful fellow looks vaguely and forlornly into the sky, mumbling to himself; “I see the moon though it is a bright afternoon.” His shrinking waistline is barely able to keep his trouser firmly on his buttocks; his faded jeans has dropped loose, revealing a not so manly groin bristling with an untidy mass of neglected pubic hair. And over there is a bizarre ritual by a group of four who are full of smiles while slurping some curious liquid that an inmate (Jah) is dropping on their tongues from a goblet he is holding. In fact the officiating “priest” has just urinated into that cup in their very sight and yet, they are licking it with relish!
Yet, if you find the above narrative about our less fortunate compatriots to be unsettling, then what pertains among some of the supposedly normal, sober and more privileged workers at the facility would outrage you beyond measure.
The appalling lack of oversight is nothing compared to the drug dealing and abuse of “patients.” It’s hard to read, but essential.
liz | 4:31 PM | Uncategorized
Okay, so it’s not the most cheerful holiday. But it’s certainly one of the most important. Today at 4:30, go to City Hall for the vigil/rally paying tribute to those homeless individuals who have died. I have a press release here:
On the first day of winter and the longest night of the year, we come together to
REMEMBER homeless and formerly homeless Philadelphians who have passed away in 2009,
HONOR those still living on our streets and in shelters,
and CALL for a renewed commitment to end homelessness.
To help someone who is homeless: Call the Philadelphia Homeless Outreach Hotline at 215-232-1984
Below is a list of participating organizations:
Arch Street United Methodist Church – Bethesda Project –
Broad Street Ministry – Catholic Health East – Covenant House – Depaul USA – Dignity Housing – Episcopal
Community Services – Homeless Advocacy Project – Horizon House – House of Grace Catholic Worker – Impact
Services Corporation – JEVS – Lutheran Settlement House – Mental Health Association of Southeastern
Pennsylvania – Pathways to Housing –Philadelphia Veterans Multi-Service & Education Center – PRO-ACT –
Project H.O.M.E. – Public Health Management Corporation – Ready Willing & Able – Resources for Human
Development/Ridge Center –RHD/People’s Choice & Silver Springs Centers – SELF Inc. – St. Francis Inn – St.
John’s Hospice – Sunday Breakfast Rescue Mission – Tenant Union Representative Network – Traveler’s Aid
Philadelphia – Youth Emergency Service
Kudos to all of them.
And to add a little levity, or pathos, or something, here’s a related Cute Fix — no glibness intended, just something to get you thinking.
liz | 1:45 PM | Uncategorized
Wow. The “grandfather” of ECT – and one of the primary financial beneficiaries — has posted a comment for the FDA. I was trying to find my own comment to post on this here blog, but his is so much more amusing! Poor guy is afraid of losing his meal ticket — not just because of the devices, but because of his publications. He’s elderly now, so go easy.
Click here to see it. It’s attached there as a Word doc.
liz | 3:16 PM | Uncategorized
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 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