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.

Sincerely,

Lynne Matallana
President, National Fibromyalgia Association

I agree with so much of what you say Mary. I do a ton of research which is why I am so mad that he offered a “cure” and not simply “relief.” But should she be blamed for trusting him? No, the blame lays with the expert for his false promise.

I am glad to hear you are doing well living with FM and that you have found a way to share your experience and expertise. I hope you continue in good health. FH

I myself have benefited temporarily from chiropractic care, so I do believe in its benefits. I just don’t believe that Dr. Whitcomb should be selling the false promise of a cure and profiting off peoples desperation. It makes me very angry.

The California Board of Chiropractic Examiners is now moving to revoke his license. If you want to read more about him click on the link in my post above, and here is another: http://abclocal.go.com/kgo/story?section=news/iteam&id=6507206

I too have fibromyalgia and thought five years ago that I was doomed to a life of canes and heating pads. No more. I live a full and active life. It can be done. Start by respecting the body you have and feed it well and move it regularly. That means a healthy diet and exercise. Yes, I know it hurts to move, but you must move. Every day. Even if just a little. Start small.

I’d send you a hug if I could because I’ve been there. I remember those days and I want you to know that good days are ahead.