Monday, June 9, 2008

a song of CFS and invisible illness

in a recent comment cinderkeys let me know about a song she'd written. i was quite touched by the depth of the emotion conveyed about the everyday of invisible illness, CFS in particular. With her permission... here are the lyrics (link to her myspace and the song below):

Copyright 2006 Susan Wenger
Band name: Cinder Bridge


Here I am again
Sitting by the window
In my small apartment on the second floor
Keep myself occupied
By looking at the traffic
As if I've lost the right to ask for more

My body feels like it's
Moving underwater
As I lift a cup of coffee to my face
I think about the things
I'd like to try and do today
But somewhere in the middle lose my place

Thick fog hazy brown
The two-ton weights that pull me down
They don't exist if no one else can see
Everybody knows about
The failings of the down and out
And everybody knows about me

I had a good job had some good friends
Had a life I could look forward to
When I woke up each day
And then the fog rolled in
Consumed them one by one
'til there was nothing left for it to take away

Sometimes I count it as a victory
When I manage
Just to drag my aching body out of bed
The doctors, mystified
Could not produce an answer
So they told me it was all in my head

'cause if I wanted to
I could shake this yuppie flu
Straighten out and set myself free
Anyone can clearly see
We all choose our own destiny
And everybody knows about me

Does it make it easier for you
To think there must be something I could do
Rise like a phoenix from the ashes of this solitary world

So I remain here
Sitting by the window
Watching all the people with their lives to live
I would give anything
To go outside and join them
But today I don't have anything to give

And still they have no doubt
I'm looking for an easy out
And this is what I wanted secretly
Everyone will have their say
They shake their heads
They walk away
And everybody knows about me
Everybody knows about me
Everybody knows about me

To take a listen head to

(If it doesn't start playing immediately, click the "Everybody Knows About Me" link.)

In Susan's own words, "My aim in writing "Everybody Knows About Me" was twofold. First, I wanted people with CFIDS or similar invisible illnesses to feel they weren't alone -- that not everyone believes it's just hypochondria or laziness. Second, I wanted to make nonsufferers understand why it's silly to believe that CFIDS/other invisible illnesses are just hypochondria or laziness."

Epilepsy Drugs to Get Suicide Warnings, FDA Confirms

US regulators are very close to finalizing new suicide warnings for 11 epilepsy drugs, The Wall Street Journal reported today. This past January, the Food & Drug Administration (FDA) issued an Early Communication announcing a safety review of the epilepsy drugs after a study showed they increased patients’ risk of suicidal thoughts and behavior.

The 11 epilepsy drugs slated for a new suicide warning are:

In addition to treating epilepsy, the anti-seizure medications are used for a variety of other illnesses, including migraines, certain nerve-pain disorders, and psychiatric diseases such as bipolar disorder that themselves carry a risk of suicide.

The FDA began investigating if epilepsy drugs posed any suicide risk in 2005. In doing so, the FDA analyzed almost 200 studies of 11 anti-seizure drugs, some that have been on the market for decades. The studies tracked almost 28,000 people given epilepsy medications and another 16,000 given dummy pills.

According to the FDA, 0.43 percent of drug-treated patients experienced suicidal thoughts or behavior, compared with 0.22 percent of placebo-takers. The higher risk of suicidal thoughts and behaviors was observed at one week after starting a drug and continued to at least 24 weeks. The results were generally consistent among all the different drug products studied and were seen in all demographic subgroups. Overall, four people in the drug-treated groups committed suicide, and none in the placebo groups. For every 1,000 patients, about two more patients taking epilepsy drugs experienced suicidal thoughts than those who took placebo.

In an interview with The Wall Street Journal, Russell Katz, director the FDA’s neuropharmacological drug division confirmed the suicide warnings are coming. “We are working on the labeling changes that we want to get to the companies,” he said. An FDA advisory panel is slated to take up the issue of epilepsy drugs and suicide on July 10, but the Journal speculated the new warnings could come even sooner than that.

At least one drug maker, Pfizer Inc., is less than pleased at this development. Pfizer disputed the FDA’s analysis in a forum this week sponsored by the Epilepsy Study Consortium in New York. Pfizer especially disputes the inclusion of Lyrica - one of the company’s biggest growth drivers -on the FDA’s warning list. Pfizer said that Lyrica accounted for only 6.3% of the total 142 suicidal events cited by the FDA analysis. But the FDA is sticking to its guns, and the new suicide warning will apply to all 11 epilepsy drugs.

Most other epilepsy drug makers are resigned to the label changes, according to the Journal. GlaxoSmithKline, the maker of Lamictal, approached the FDA this year to volunteer changes regarding possible suicidal-behavior risks. Other drug makers may have chosen not to challenge the FDA on suicide warnings because their medications are no longer as lucrative as they once were, as patents on many epilepsy drugs have, or are close to, expiring.