Lindsay is MAD
Not crazy mad. Angry mad. Because of this article that appeared in the New York Times today, that set me - and how many other people - back about 20 years today. It's absolutely appalling to me.(For the record, we've already determined that Lyrica is not a suitable treatment for me, because I'm unwilling to deal with its side effects - including unknown effects on future pregnancies.)
Anyway. Here are a few juicy excerpts. You can read the article in all its disgusting glory if you really want to - and I'd recommend it, because there's actually some good information buried deep inside, under all the bulls**t. But this should suffice to get my point across. The bold is ALL MINE.
Feel free to send your own letters of protest to: letters@nytimes.com.
Drug Approved. Is Disease Real?
By Alex Berenson
January 14, 2008
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.
PHOTO CAPTION: Lynne Matallana, who says she has fibromyalgia, said the drugs would aid acceptance.
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.
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. [NOTE FROM LINDSAY: IF ALL OF THESE BODIES RECOGNIZE IT AS A DISEASE - INCLUDING INSURANCE COMPANIES, WHO ARE THE LAST PEOPLE WHO WANT TO ADMIT IT - HOW IS THERE STILL A 'CONTROVERSY'?]
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.”
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.”
Dr. Wolfe expects the drugs will be widely used. The companies, he said, are “going to make a fortune.”
Labels: Arthritis/Fibromyalgia, Stuff I Found Online
posted by Lindsay @ 9:57 AM
8 Comments:
This just proves that one cannot believe all one reads! I just cannot believe that one brings pain and suffering on oneself in this way. Also MAD!
I know... The good news is that only SIXTEEN MILLION PEOPLE read that article today. Sigh.
I sent the writer a kind-worded e-mail about how overjoyed my sister will be when I let her know her disease is made up.
It got a little less kind near the end, but I kept myself from ending with "Fuck you". That was in the original draft.
(Watch your language, Aaron.)
I want to let you know that I emailed the writer of this article and said he should apologize to you and every other person who is trying to cope with the crippling effects of this disease. I also said he should be strung up by his toenails for jeopardizing the research being done to help people live with fibro.
Uh oh... I emailed him too. FUNNY.
I want to email him, I want to email him!
What a bunch of bs. Come on, Lindsay, it's all in your head. Just suck it up.
Brutal and extremely disheartening.
What a jerk-off.
Yuck - that left a bad taste in my mouth. Hang in there lady and keep sharing your truth ... it will make a difference.
Unbelievable! That's all I have to say.
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