January 24, 2008

How Not to Write a Health Story

The New York Times last week published an incredibly dismissive page-one story about fibromyalgia, questioning whether it is a “real” disease.

The hook for the story are the advertisements for Lyrica, the first medicine approved to treat the pain condition:

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.”

Author Alex Berenson writes that doctors who specialize in treating fibromyalgia welcome Lyrica — and the other fibromyalgia drugs likely to receive FDA approval this year — because they will encourage doctors to address a disease that is undertreated and whose sufferers are not always believed.

“What’s going to happen with fibromyalgia is going to be the exact thing that happened to depression with Prozac,” said Dr. Dan Clauw, a professor of medicine at the University of Michigan who has consulted with Pfizer, Lilly and Forest. “These are legitimate problems that need treatments.”

While the point that this is a legitimate problem is appreciated, it’s disturbing that it’s left to a drug company to provide the validation. In fact, I wish that instead of questioning the existence of fibromyalgia, the story had focused mainly on questioning the drug’s safety and numerous side effects (which comes up in the last third of the story) — as well as the potential for exploiting the health concerns of people who don’t have fibromyalgia.

Instead, the author’s dubious tone mars what could have been a useful piece. As Paula Kamen, who writes about women’s health and chronic illness (most notably in her excellent book “All in My Head“), notes:

A red flag is that, as the article described early on, fibromyalgia primarily affects women — and even worse, “middle-aged women.” Combined with the fact that pain is invisible, and it is a primarily female disease (like most pain and fatigue disorders), the burden of proof the article demands for fibromyalgia patients is unduly heavy, laden with double standards that other patients do not face.

Kamen continues to hit on why this story fails on multiple levels — including its lack of medical context:

Another immediate red flag was that Berenson immediately added that these patients are likely to suffer from “other similarly nebulous conditions, like irritable bowel syndrome.” First of all, Berenson has used the world “nebulous” to show his own bias; this was not a quote from a source. Meanwhile, Berenson fails to consider the basic medical concept of co-morbidity, or of one brain chemistry imbalance underlying one disorder as likely to cause others. This follows the old “logic” that to discredit a woman’s pain, a doctor would show that she complained about “too many ailments” and had “somatization disorder.”

Despite the controversy reported in the Times, the American College of Rheumatology, the Food and Drug Administration and insurers all recognize fibromyalgia as a diagnosable disease.

So, apparently does The New York Times: It has established a permanent health guide for the disease complete with potential causes and symptoms.

Too bad this story took a page from the past.

The Times published more than half a dozen letters from patients and doctors taking issue with the coverage, including one from Benjamin H. Natelson, M.D., a professor of neurosciences and director of the Pain and Fatigue Study Center at U.M.D.N.J.-New Jersey Medical School, who wrote:

“Your article will make doctors, relatives and friends of millions with fibromyalgia conclude that their symptoms are just a ‘physical response to stress, depression, and economic and social anxiety.’ This is an opinion ignoring published medical literature showing brain abnormalities in fibromyalgia and drugs that clearly improve patient health.”

“What’s needed,” Natelson concudes, “is less talk and more federally financed, peer-reviewed research.”

Exactly. While there are many illnesses and ailments that we don’t understand and can’t quantify, those without a clear cause are often blamed on that all-too-available catchall: “stress.” As noted in Our Bodies Ourselves, “Women are particularly vulnerable to having our ailments dismissed as the results of stress. For example, before the cause of multiple sclerosis — an illness that disproportionately affects women — was known, women who experienced its symptoms were often considered to have a mental impairment and diagnosed with ‘hysteria.’”

Whether or not people with fibromyalgia are suffering from a clearly defined illness or a constellation of similar symptoms, their suffering, as one of my colleagues put it, is physical, real and often brutal. Doctors who believe that “diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate” deny patients the language to articulate their experiences.

And if there’s one thing that most definitely causes anxiety, it’s when a doctor says there’s nothing there to worry about when the pain says otherwise.

Plus: For more information, visit the Fibromyalgia Network and the National Fibromyalgia Association.


5 Responses to “How Not to Write a Health Story”

  1. Margie Says:

    I would be apprehensive of the medicine as a lot of new medicines have proved today. A friend of mine suffered from fibromyalgia, and she was tested for food allergies. It turned out after she completely changed her diet, she was much better. I would try gentle yoga and change of diet before medicine.

  2. Khurt Says:

    I was trying to explain my wife’s challenges with fibro to a friend and I know she was having a challenge with it. My wife also has restless leg, a sleeping disorder, and depression so she is on an interesting cocktail of drugs.

    Others wants to suggest food allergies (gluten allergies are quite popular now) and are stumped when I explain that my wife has undergone a battery of food allergy tests. And yes, she has tried yoga, and electro shock therapy and …. No. It’s no in her head. She’s in real pain right now.

    On another note: Hope you don’t mind. I started a social network for fibromyalgia over on Ning. http://fibromyalgia.ning.com. Let me know what you think.

  3. Liz Says:

    It is unfortunate in our culture that depression, emotional and physical pain are not seen for what they really are. They are cries for help- not something that can be numbed or drugged away.
    One book I found particularly helpful is titled The Body Never Lies by Alice Miller.
    I have no doubt that these vague diseases could be a deeper emotional pain that has never been expressed and has never healed. Past and present emotional, physical and sexual abuse is a woman’s issue because it happens to almost all women.
    When will it stop? When women stop passively numbing themselves and start demanding their lives back.

  4. gretchen Says:

    i got sick last year from implants so i relate. my story is here http://www.myimplantstory.com and i have so many fibro and other symptoms that nobody can pin point.

  5. Kate Hutchinson Says:

    Fibromyalgia is notoriously difficult to diagnose. My chronic pain was treated to physical therapy, yoga, diet changes, basic OTC pain relievers and a few MRIs to rule out slipped discs in my cervical spine. And then I was diagnosed with fibromyalgia. It was relief to have a name for my disease, and when Lyrica was first approved, I went straight to my doctor to try it. I’ve been on it since last July, and I can only say I feel much better. I sleep better, I can move more freely, and so forth. I’m sure it won’t work for everyone, but I was terribly angry with the NYT article that dismissed it altogether. I would like to see the author could walk a day in my shoes and then tell me my pain isn’t real.

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