Yesterday Lynne Matallana, President of the National Fibromyalgia Association, left a comment on my blog. It was in response to the Associated Press article last week; AP IMPACT: Drugmakers’ push boosts ‘murky’ ailment. This article has caused quite a stir in the Fibromyalgia community. In her comment Lynne took the time to address what was said and to counter any enforcement the article gives to the many misconceptions about Fibromyalgia. I felt her letter was too important to sit unnoticed among the comments on my blog, so I am copying it into a new post. I hope you will all take the time to read it.
To the AP editors:
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
For more information on The National Fibromyalgia Association and President Lynne Matallana please visit the NFA website.
Thanks Lynne Matallana for your informative letter regarding the erroneous and stinging AP story. I am embarrassed to speak out to anyone other than a few close family and friends about having fibromyalgia, because of the stigma that just doesn’t seem to go away about this disorder. The statement, that fibromyalgia sufferers are “more likely to have a history of mental illness and are economically disadvantaged?” is so ignorant of the writer.
I look like a picture of health most of the time, which can be deceiving to others, I know. I don’t like talking about it, but it’s true that it is a life altering disease. There are many times I avoid hugs because of the pain of someone touching my body. When a child runs up and grabs my legs, as children often do, it’s all I can do to keep from letting out a scream from the pain. I am so very tired most of the time, yet when it comes time to sleep, sleep just won’t come. Oh yes, these are just a few of the life altering painful situations. I’m sure one day there will be an explanation as to why, what causes it, and how it can successfully be treated. Then the rest of the population will have another view. Until then, we have to teach those who are ignorant, be patient because they know not what pain their words and mockery cause fibromyalgia sufferers.