"Q"OD: If the fans don't wanna come out to the ballpark,

no one can stop 'em ~Yogi Berra.
Sunday is the Super Bowl, amazingly the Giants are playing Green Bay.They haven't won a Championship since 1986. (an amazing year-the Mets won the World Series and I got married) I haven't really cared about football since. Steve isn't a fan and and we only surf the Super Bowl most years but I may actually be moved to watch the damn thing this time. I am, after all a devoted New Yorker (and borderline-chauvinistic Brooklynite) and even though they play in New Jersey I must represent, ya know? But I will also watch in memory and support of all those Sundays without end watching football and all the men I did it with, the two Shellys: Cousin Shelly, who died and Big Shelly, who moved to Florida, various and sundry boyfriends. And also Barbara who if she read this blog, would be mad if I didn't mention her. So yeah: GO BLUE!
It would be so much more interesting if they were playing in Green Bay.
I'm kind of stunned that Edwards has dropped out of the presidential race but I guess he was less inclined to go for the jugular then Obama-Clinton. I hope now that there are only two of them, sniping can end and serious issues can be discussed I want to hear what good about the candidate not what's bad about the opponent. I'm not at all surprised about Guiliani dropping out, ihe was a joke to begin with. Rudy would have created a huge police state here and no end to the wars over there.You know politics really suck, it's all about money and lies, power and greed. It seems that no one is above corruption. Nonetheless, I hope the Dems can get their shit together, stop capitulating to the administration and end this Bushian nightmare.
Oh my, there's one good thing about the writers strike on TV; everything is repeats so we are watching DVDs and avoiding all those campaign ads.
I must always have my silver lining!

Liberated some pix

Our Pocono vacation, Sarah, Audrey: in reverse order.

I've been busier than I should be and paying the price. Even though I try to schedule activities judiciously,necessity and uh, fun intervene. I met my brother for a quick lunch in NJ yesterday to visit Cousin Lorrie who is recuperating from surgery. I had to leave by 3:00, after which my window of opportunity slammed shut and I would suffer the dread consequences of rush hour traffic , a fate, as my father used to say, worse than death. Yada, yada, 2 more cousins and a dinner later, I made it home after 9:00. With a migraine right down into my shoulder, all from sitting for over 12 hours. I always drink decaf but yesterday I sinned and had a real coffee at lunch. I was up till past 3:00AM, despite the Lunesta and muscle relaxer I take every night.(I've found that full moons can disorder my sleep, too.)I only slept till 8:00 AM, woke up grouchy and befuddled, go take my vitamins and as soon as I swallow them I realize I took my night pills by mistake. ( Even though my vitamins are in a big purple box and the night pills are in a tiny white one) I had no choice but to go back to bed cause I can hardly walk when I take these pills. I slept for a couple of hours but now I feel ucky, stoned and groggy. (Three of the 7 dwarfs?)I did have a wonderful time though! Turns out, a Cousin Sue is a massage therapist. She suggested eliminating dairy from my diet as it triggers pain in nerve endings. At least I think that's what she said, we are a rowdy group. Does anyone know about this? I very unwillingly gave up cheese, what next? Must I eat my gruel with soy milk?

No good deed goes unpunished.
- Clare Booth Luce
This was the quote-of-the-day but I happen to know the citation is wrong. It's wasn't Clare Booth Luce, it is the 235th of the Ferengi Rules of Acquisition.

I generally avoid temptation unless I can't resist it.- Mae West

I was mad at myself for being so irresistably bummed about that stupid article. Although they did not print my letter or address the bias in their article, there was quite a positive response in the Letters section of the Times today. Maybe this will result in a call for action. Uh, yeah.

Luckily, I had a meeting of my FMS/CFIDS support group. The timing was serendipitous, it was kind of a seminar/therapy session/ big hug, just what the doctor (ha) ordered. I feel supported and empowered. I'm so glad I got over my fear and resentment of technology and modern communication and dived (OK, pulled, kicking and screaming) into cyberspace!
On the subway into the city yesterday a man and boy of about 4 or 5 got on and sat next to me.They were having a deep discussion so I removed my earphones (I'm learning Italian!) to eavesdrop.
Boy: I'd like vegetables for dinner
Dad: Well, we're having spaghetti and meatballs tonight.
Boy: Spaghetti sauce is made from tomatoes, tomatoes are vegetables!

Dad: Well, some people think it's a vegetable, others think it's a fruit.
Boy: They can't make up there minds?
Dad: There's really two schools of thought about it.
Boy, after thinking awhile: you mean like Pluto?
I had to laugh out loud!
My cleaner, Cynthia (Caramel and I both adore Cynthia) just left. I love this moment; everything is so sparkly clean, it makes me giddy.
I am waiting for Barbara (everyone should have one, you know) who has been at her doctor's office since 10:00. It is now 2:00. You'd think this would be uncommon, especially in a city with so many doctors but no! Ah, she just called- she's out. We are lunching at a Chinese restaurant; I figure this is probably our millionth Chinese lunch together.
Steve and I were supposed to go to DC this weekend for Cousin Jack's faux-retirement party ( he's still working) but cannot find a caretaker for Caramel.When and why did caretaker become caregiver anyway? Take care! Words to live by, no? This picture is Jack and I looking at my Mother's old pictures. The blonde goddess is Barbara in my cellphone.

Fibromyalgia: Is disease real?

Finally, recognition. Turns out to be bad, though Fibro made the front page of the NY Times but appparently it's a fake disease. I sure wish my symptoms were fake too.
I am furious about this article (see below) and have been writing about it for hours, but because of "nebulous conditions" like cognitive impairment, I lost the post. I will vent nonetheless.
This article is insulting, irresponsible, ill-researched and biased. Fibromites are presented as a group of overweight, stressed, over-anxious middle-aged women, obsessing about illness.
Worse, it is based on an misleading and improbable TV commercial for a drug that targets limited and specific symptoms. Fibromyalgia is a syndrome; there are many symptoms and different manifestations of those symptoms in different people. None of that is described in the article. It's very difficult to make generalized statements about Fibromyalgia, yet many are quoted (and unsubstantiated) in the article. Dr Hadler: “These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.” The doctor implies that avoiding medical professional will render us less sick.
Most people “manage to get through life with some vicissitudes, but we adapt,” said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. “People with fibromyalgia do not adapt.” One wonders if the same standards apply to people with cancer or other diseases.
Poor research aside, certainly the NYT could try to be more open-minded. The headline itself biased: "is it real?" Guilty till proven innocent? The caption on the picture is also biased: "Lynne Matallano, who SAYS she has fibromyalgia". The implication is that she diagnosed herself. The "experts" interviewed are biased and /or work for drug companies.
Fibromyalgia is often associated with other auto-immune diseases such as Lupus, Sjogren's Syndrome and Rheumatoid Arthritis.
A little more research and a lot more respect please.


January 14, 2008 Drug Approved. Is Disease Real?

By ALEX BERENSON

Fibromyalgia is a real disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine approved to treat the pain condition, whose very existence is questioned by some doctors.

For patient advocacy groups and doctors who specialize in fibromyalgia, the Lyrica approval is a milestone. They say they hope Lyrica and two other drugs that may be approved this year will legitimize fibromyalgia, just as Prozac brought depression into the mainstream.

But other doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them.

As diagnosed, fibromyalgia primarily affects middle-aged women and is characterized by chronic, widespread pain of unknown origin. Many of its sufferers are afflicted by other similarly nebulous conditions, like irritable bowel syndrome.

Because fibromyalgia patients typically do not respond to conventional painkillers like aspirin, drug makers are focusing on medicines like Lyrica that affect the brain and the perception of pain.

Advocacy groups and doctors who treat fibromyalgia estimate that 2 to 4 percent of adult Americans, as many as 10 million people, suffer from the disorder.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.

Despite the controversy, the American College of Rheumatology, the Food and Drug Administration and insurers recognize fibromyalgia as a diagnosable disease. And drug companies are aggressively pursuing fibromyalgia treatments, seeing the potential for a major new market.

Hoping to follow Pfizer’s lead, two other big drug companies, Eli Lilly and Forest Laboratories, have asked the F.D.A. to let them market drugs for fibromyalgia. Approval for both is likely later this year, analysts say.

Worldwide sales of Lyrica, which is also used to treat diabetic nerve pain and seizures and which received F.D.A. approval in June for fibromyalgia, reached $1.8 billion in 2007, up 50 percent from 2006. Analysts predict sales will rise an additional 30 percent this year, helped by consumer advertising.

In November, Pfizer began a television ad campaign for Lyrica that features a middle-aged woman who appears to be reading from her diary. “Today I struggled with my fibromyalgia; I had pain all over,” she says, before turning to the camera and adding, “Fibromyalgia is a real, widespread pain condition.”

Doctors who specialize in treating fibromyalgia say that the disorder is undertreated and that its sufferers have been stigmatized as chronic complainers. The new drugs will encourage doctors to treat fibromyalgia patients, said Dr. Dan Clauw, a professor of medicine at the University of Michigan who has consulted with Pfizer, Lilly and Forest.

“What’s going to happen with fibromyalgia is going to be the exact thing that happened to depression with Prozac,” Dr. Clauw said. “These are legitimate problems that need treatments.”

Dr. Clauw said that brain scans of people who have fibromyalgia reveal differences in the way they process pain, although the doctors acknowledge that they cannot determine who will report having fibromyalgia by looking at a scan.

Lynne Matallana, president of the National Fibromyalgia Association, a patients’ advocacy group that receives some of its financing from drug companies, said the new drugs would help people accept the existence of fibromyalgia. “The day that the F.D.A. approved a drug and we had a public service announcement, my pain became real to people,” Ms. Matallana said.

Ms. Matallana said she had suffered from fibromyalgia since 1993. At one point, the pain kept her bedridden for two years, she said. Today she still has pain, but a mix of drug and nondrug treatments — as well as support from her family and her desire to run the National Fibromyalgia Association — has enabled her to improve her health, she said. She declined to say whether she takes Lyrica.

“I just got to a point where I felt, I have pain but I’m going to have to figure out how to live with it,” she said. “I absolutely still have fibromyalgia.”

But doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.

The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.

“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”

Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”

In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs.

Most people “manage to get through life with some vicissitudes, but we adapt,” said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. “People with fibromyalgia do not adapt.”

Both sides agree that people who are identified as having fibromyalgia do not get much relief from traditional pain medicines, whether anti-inflammatory drugs like ibuprofen — sold as Advil, among other brands — or prescription opiates like Vicodin. So drug companies have sought other ways to reduce pain.

Pfizer’s Lyrica, known generically as pregabalin, binds to receptors in the brain and spinal cord and seems to reduce activity in the central nervous system.

Exactly why and how Lyrica reduces pain is unclear. In clinical trials, patients taking the drug reported that their pain — whether from fibromyalgia, shingles or diabetic nerve damage — fell on average about 2 points on a 10-point scale, compared with 1 point for patients taking a placebo. About 30 percent of patients said their pain fell by at least half, compared with 15 percent taking placebos.

The F.D.A. reviewers who initially examined Pfizer’s application for Lyrica in 2004 for diabetic nerve pain found those results unimpressive, especially in comparison to Lyrica’s side effects. The reviewers recommended against approving the drug, citing its side effects.

In many patients, Lyrica causes weight gain and edema, or swelling, as well as dizziness and sleepiness. In 12-week trials, 9 percent of patients saw their weight rise more than 7 percent, and the weight gain appeared to continue over time. The potential for weight gain is a special concern because many fibromyalgia patients are already overweight: the average fibromyalgia patient in the 2007 survey reported weighing 180 pounds and standing 5 feet 4 inches.

But senior F.D.A. officials overruled the initial reviewers, noting that severe pain can be incapacitating. “While pregabalin does present a number of concerns related to its potential for toxicity, the overall risk-to-benefit ratio supports the approval of this product,” Dr. Bob Rappaport, the director of the F.D.A. division reviewing the drug, wrote in June 2004.

Pfizer began selling Lyrica in the United States in 2005. The next year the company asked for F.D.A. approval to market the drug as a fibromyalgia treatment. The F.D.A. granted that request in June 2007.

Pfizer has steadily ramped up consumer advertising of Lyrica. During the first nine months of 2007, it spent $46 million on ads, compared with $33 million in 2006, according to TNS Media Intelligence.

Dr. Steve Romano, a psychiatrist and a Pfizer vice president who oversees Lyrica, says the company expects that Lyrica will be prescribed for fibromyalgia both by specialists like neurologists and by primary care doctors. As doctors see that the drug helps control pain, they will be more willing to use it, he said.

“When you help physicians to recognize the condition and you give them treatments that are well tolerated, you overcome their reluctance,” he said.

Both the Lilly and Forest drugs being proposed for fibromyalgia were originally developed as antidepressants, and both work by increasing levels of serotonin and norepinephrine, brain transmitters that affect mood. The Lilly drug, Cymbalta, is already available in the United States, while the Forest drug, milnacipran, is sold in many countries, though not the United States.

Dr. Amy Chappell, a medical fellow at Lilly, said that even though Cymbalta is an antidepressant, its effects on fibromyalgia pain are independent of its antidepressant effects. In clinical trials, she said, even fibromyalgia patients who are not depressed report relief from their pain on Cymbalta.

The overall efficacy of Cymbalta and milnacipran is similar to that of Lyrica. Analysts and the companies expect that the drugs will probably be used together.

“There’s definitely room for several drugs,” Dr. Chappell said.

But physicians who are opposed to the fibromyalgia diagnosis say the new drugs will probably do little for patients. Over time, fibromyalgia patients tend to cycle among many different painkillers, sleep medicines and antidepressants, using each for a while until its benefit fades, Dr. Wolfe said.

“The fundamental problem is that the improvement that you see, which is not really great in clinical trials, is not maintained,” Dr. Wolfe said.

Still, Dr. Wolfe expects the drugs will be widely used. The companies, he said, are “going to make a fortune.”

Happy 2008!

Again I hit "save" instead of "publish". Oi!

Hard core blog-readers may know that there is group of English musicians with a band (Klezmer, I think) and a website named Oivavoi. I discovered this because I can't remember my blog address so I google it and sometimes get news of them.This was a comment posted to their site by a fan:

"Oivavoi? Sounds like a Finnish butter type. (voi=butter, oiva=excellent, handy)"

Who knew?

So it was 20 degrees this afternoon during our doggiewalk! Ah, but it was also brilliantly sunny. My new down coat is warming me well but the hood though fat, toasty and windproof is a hair-killer. Two minutes with the hood up and my hair, normally limp and flaccid anyway, plasters itself to my head. I’m trying to let it grow a little but if it continues misbehave, it’s Bebe Scissorhands! Caramel has a new coat too; it’s unfortunately red and puffy but it’s warm, it’s easy to get on and off and it was only 7 bucks at Old Navy. It was too big for her skinny self but I made some alterations and now it fits to cover her naked neck and belly. It keeps her warm but she shivers anyway. She is currently in disgrace as she is apparently going through another doggie transitional phase. She’s been overly protective of me and barking at people. And she peed in the house, yesterday cause Joel was here and today because the housecleaner (who she loves) and the sleep tech (who she doesn't) were here. My poor psycho puppy has issues! She better get over herself or, as Steve tonight bespoke: the next stage she goes through will be leaving town.
We had a quiet and lovely holiday. Pre Xmas with Steve's sisters at Jeanette's, Xmas at Joel and Audrey's and a pre New Years dinner here with Bro and Roz.
Nicely, nicely.
I just got a tin of homemade Xmas cookies from Camille! The box is bashed in and there's a lot of crumbs but they are delicious and there are rugelach! In the early 80's when Camille and Genny lived in my building, whenever there was a snowstorm we would drop everything and get together and bake rugelach; chocolate-walnut-raspberry. I still think of them when it snows- both the shikshas and the cookies.
Caramel tore her dewclaw today, probably during her romp with Nitro, a dog who is her double-sized double. I must go clean the bloodstains off the couch.
Cousin Jack is coming for the weekend and I don't want it to look like Sweeney Todd in here.