Fibromyalgia Patients Fight Back Against AP Article

The Associated Press article by Matthew Perrone (February 8, 2009, “Drugmakers’ push boosts ‘murky’ aliment) has drawn several comments. Click here to read the article.

See below to read the NFA’s response to the Associated Press as well as comments and letters by others.

Focus on the Facts
The recent Associated Press story on fibromyalgia hardly qualifies as news; it merely regurgitates the same arguments that have been published in the past and offers the opinions of the same two men who have built careers out of drawing attention away from the hundreds of scientists who continue to make amazing scientific strides toward understanding the underlying cause(s) and pathophysiology of what fibromyalgia patients experience.

By perpetuating this message, the article implies that it is more acceptable to debate names or labels for this “set of symptoms” and to point fingers at the usual “villains” (i.e.: pharma and the nonprofits who accept money from them), than to focus on the millions of desperate patients who deserve to have a voice in the discussion.

The fact is that credible medical institutions and organizations recognize fibromyalgia as a life-altering disease; the fact is that patients who suffer with FM depend on the medical system (including pharmaceutical companies) to help them inform the public that this is a very real illness and that they need treatments, including pharmaceutical agents, to help them get through each day - and to look forward to some sort of quality of life in the future.

This article misinforms readers in a way that undermines and victimizes innocent people. By telling only selective parts of the story the author is perpetuating misperceptions and making it difficult, if not impossible, for readers to grasp what is truly important: that we need to stop debating and pointing fingers and start asking why it is perceived as acceptable to stigmatize a patient population just because medical research hasn’t yet provided us with all the information needed to understand that particular illness. Every illness seems to go through a stage of having to prove its legitimacy, but why should the patients be suspect during that phase of research?

Why would AP print information that is simply not true? -

i.e.: people with fibromyalgia are “more likely to have a history of mental illness and are economically disadvantaged?”

That is totally false, as is the writer’s statement that the National Fibromyalgia Research Association received pharma money to fund Dr. Clauw’s functional MRI study. The money for all of the NFRA’s funded research came from the founder (the husband of a fibromyalgia patient), general donations, and revenue generated from a nonprofit bingo game. (Yes, the FM community has had to rely on bingo games to fund our research!)

How can we allow the system to fail millions of people whose only “fault” is to have developed a devastating illness?

Along with the rest of the fibromyalgia patient community, I look forward to the day when society (including the medical community, the media, and our government agencies) accepts the responsibility of treating fibromyalgia patients like any other group of chronically ill patients; when it is a given that fibromyalgia will be further studied, that treatments will be developed and made accessible to patients, that the media presents the facts rather than perpetuating threadbare controversies.

Now that would be news worth printing.

Lynne Matallana
President, National Fibromyalgia Association

Undermining the Validity of FM
My name is Sharon Waldrop. I am the Founder and Director of the Fibromyalgia Association of Michigan, a volunteer nonprofit organization. I am a patient living with fibromyalgia (FM) and I am deeply disappointed in the article that ran yesterday in the Free Press copied off the AP. I am writing to you to ask if you would do a story on fibromyalgia to provide a balanced report on fibromyalgia?

I am very sad that the millions of people who are suffering and struggling every minute of every day with fibromyalgia never get a chance to give their viewpoint in the media. Instead articles are written to please editors who have a formula that dictates what type of story “gets attention” and therefore gets printed …never taking into consideration or caring about the ramifications that their message will have on millions of innocent people.

The ramifications are that more marriages crumble, friendships (i.e. support systems) end, people lose jobs, people are denied access to care because the opinions of a select few are given mass attention.

Credible medical institutions like Johns Hopkins University, the University of Michigan, the National Institutes of Health, (just to name a few), recognize fibromyalgia as a life-altering disease.

It is time to treat FM patients with respect. Millions of people suffer from FM. Millions more are suffering too as they watch their loved one struggle. These people do not need to read stories that FM is not real.

They need to read stories about the exciting medical advances in fibromyalgia. . . like the brain imaging study done at the University of Michigan that concretely prove people's brains with FM act differently than people without FM.

They need to be given hope and given the treatment they deserve as a human being.

My group has over 800 members in the Metro Detroit area. We provide support and education to people affected by fibromyalgia. People come to me in tears because they don't know where to go for help. I am pleased that for 11 years I have given people a place to go -- even if it is just for one night a month.

No human being should have to fight an illness and also fight with spouses, friends, employers and yes, even doctors that they are in disabling physical pain. The question is not why do we continue to undermine the validity of FM but why are people afraid to provide support to people suffering from the chronic pain of fibromyalgia?

In this time of uncertainty in the world, people more than ever need hope and help. Please will you write a story to help your readers understand FM? On behalf of my group we would greatly appreciate it.

Sharon Waldrop
Director, Fibromyalgia Association of Michigan

Is Fibromyalgia Real?

We could have predicted it. Naysayers who say that now there are three approved prescriptions medicines for fibromyalgia, a chronic pain syndrome, marketing is fueling HYPE about a condition some people say is all in a patient’s head.

Here we go again. The drug companies are always an easy target. When a drug is a success it can bring in more than a billion dollars a year. Treatments are costly and many people, including millions with no insurance or who are underinsured, struggle to pay for them. So the pharmaceutical industry continues to have a public relations problem.

But none of that has anything to do with whether people- primarily women- are suffering with debilitating pain, pain that is effectively treated often by the approved medicines.

Critics- including some doctors- say that because there’s no definitive test for fibromyalgia it is a disservice to rush to treatment with the new drugs when maybe some patients need psychotherapy instead. It’s in the patient’s head.

I am not qualified to evaluate who needs the medicines and who doesn’t. But I do know this: the FDA advisory panels and the FDA itself would not have approved the medicines, nor would the drug companies have invested hundreds of millions of dollars on clinic trials, if they had no effectiveness.

After approval the drug companies have hit the airwaves with television commercials and with websites trying to raises awareness for the condition and that there are approved treatments. They also have been funding education programs to connect rheumatologists, who know all about fibromyalgia, with many primary care doctors who don’t. And they are funding patient education in partnership with groups like the National Fibromyalgia Association, founded by a patient and an organization that has cried out for awareness and effective treatments for years.

Is this public and medical education effort a bad thing? Some media reports suggest it is: getting doctors and the public in a tizzy about a phony or overused diagnosis fueled by greedy drug companies who want to make billions.

Oh please! While one could argue such important issues should be debated, I think we should focus on how to help give suffering patients relief from their pain and celebrate that private industry has made huge investments to meet the need.

Do we need to sort out exactly who needs these treatments and who could benefit in other ways? Sure. But to cast the same old aspersions on the drug companies is unfair and if we keep skewering them one day we can kiss drug development goodbye. The next time you swallow a pill that helps you ask yourself what the world would be like if no one invented or marketed products like that.

Andrew Schorr
Founder, Patient Power

SOURCE

(this blog owner has been suffering with Fibromyalgia, Chronic Myofasical Pain and about 11 of these illnesses overlapping diseases since 1995 and has reluctantly been on permanent disability since then. Cymbalta & Lyrica do not work for me. I have refused most pain relief except for one pill a week. I deal with constant, 24/7 severe crippling pain.

Many of my relationships were completely destroyed after my diagnosis because of 1. my ex's unwillingness to cope with my permanent disability and 2. clueless "friends" thinking I was contagious.

I have written the AP as well about their publishing this inhumane, archaically slanted article about a devastating illness that affects millions of people every day.)

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