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New York Times, fibromyalgia, Lyrica and truth

By Jenni Prokopy, the Editrix

If you have fibromyalgia, you've probably read Alex Berenson's article on fibromyalgia and Lyrica, which appeared in the New York Times on January 14, 2008. If you're like me, it made you mad. Real mad.

It's hard to express my frustration with this article eloquently, because my anger just pours out every time I start to talk about it. I tried my best in this brief letter to the editors, which the NYT didn't publish:

"Why are we still arguing the legitimacy of fibromyalgia? Along with the FDA and American College of Rheumatology, the AMA, the Arthritis Foundation, and countless others recognize it. How many institutional endorsements does it take for fibromyalgia to be “real?”

"The assertions of Drs. Ehrlich and Wolfe fall flat. Yes, the body reacts negatively to stress, causing various symptoms…and some people with fibromyalgia experience stress and its effects. But to dismiss millions of patients as simply “stressed out” is insulting. Symptoms that can’t be pinned down in clinical tests are still real, and can indicate real disease; just ask doctors treating chronic pain.

"Dr. Ehrlich says, “people with fibromyalgia do not adapt” to life’s stressors. I beg to differ. I adapted and spun my decade of experience living with fibromyalgia into a project that empowers thousands of people, as has Ms. Matallana. Fibromyalgia patients deserve respect along with medical treatment."

Like anyone who writes a letter to the editor, I was disappointed that it wasn't published—but once I read all the other letters the editors DID publish, I didn't care. So many strong voices were included! I was proud of the fierce response.

I was also thrilled to see Paula Kamen's ferocious response in her WIMN blog just a few days later. She's been a real inspiration to me ever since I read All in My Head, and she voiced just what I was feeling. This sentence, in particular, sums up the article's tone:

"With a tone of barely hidden scorn, the article reinforced the most vicious Civil-War Era stereotypes of women in pain as hypochondriacs, hysterics and layabouts."

National Fibrmyalgia Association Founder and President Lynne Matallana (who is interviewed in the NYT article) also published a terrific response. Her call to action is one that we must all follow:

"When an article in one of the most reputable newspapers in the world states that patients with fibromyalgia "obsess over aches that other people simply tolerate," we have to voice our outrage and make sure that the fibromyalgia community knows that we will not tolerate this kind of impertinence."

What else can I say? I'm working hard to get past my anger and sadness that those of us who live with "invisible" illness must still fight to be taken seriously. I'm renewing my focus on education and strengthening my voice.

I hope you'll join me and all the others who are speaking out against ignorance and spreading the truth. If you're a blogger, get writing. If you've been shy about talking to others about your illness, start speaking out. If your doctor isn't taking you seriously, dump that doc and get a new one. Take a stand. Use your voice.

Posted: 1/20/2008 in Venting

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