The Official Response:
National Fibromyalgia Association Response to New York Times article
Below is the statement from the National Fibromyalgia Association submitted to the New York Times in response to the January 14, 2008 front page article, "Drug Approved. Is Disease Real?"
To send a Letter to the Editor, email: letters@nytimes.com or fax: 212-556-3622
Fibromyalgia: Time to Move Forward
By Lynne Matallana
President & Founder, National Fibromyalgia Association
Alex Berenson's article on fibromyalgia, "Drug Approved. Is Disease Real?" (1/14/2008), is indeed a milestone for the fibromyalgia community and the millions of Americans who suffer from this chronic pain disorder. The National Fibromyalgia Association is glad that a major newspaper like the New York Times has featured this story on its front page and is shedding light and providing awareness on the importance of this medical condition. However, the article presents outdated opinions and neglects to discuss the research advances of the last decade and instead focuses on the opinions of a few medical outsiders who still do not believe in the legitimacy of fibromyalgia. By omitting the groundbreaking research and scientific evidence gained over the past 20 years by institutions such as Johns Hopkins University, University of Michigan, the National Institutes of Health and the Food and Drug Administration, the article gives a slanted and unrealistic perspective.
As a person living with this debilitating illness for almost 15 years, I am disappointed that this article missed the opportunity to accurately portray the real suffering of the millions of Americans--women, men and children--of all ages and races who have been looking to the National Fibromyalgia Association as their representative voice since our inception in 1997.
Yes, living with fibromyalgia in the early - to mid-90s was challenging as it is today. After years of suffering with unbearable body-wide pain, sleepless nights that lead to mind-numbing exhaustion and a host of overlapping conditions including migraine headaches, bouts of IBS and cognitive difficulties that made me incapable of even reading a book---I realized that it was imperative that the patients perspective be shared. I realized that there were millions of people like myself who were suffering from a disease...just as devastating as diabetes, cancer, or multiple sclerosis. A disease that I had not chosen and that I was determined to survive despite the daily skepticism I had to face. The only hope was to create a patient advocacy organization that could spread awareness and encourage others who could help champion efforts to change perceptions, pursue research and develop treatment options that would give the fibromyalgia community the opportunity to receive the recognition and care necessary to regain our lives. Individuals living with fibromyalgia are just like any other group of people dealing with a chronic illness, deserving of respect and adequate medical care, and should no longer be dismissed or treated with disdain.
Over the past ten years the National Fibromyalgia Association has seen the progress that has been made. Because of the work of scientists around the world, a new hope is on the horizon as their research has made great advances in providing the general public with a better understanding of the causes and possible treatments that will eventually eliminate much of the suffering caused by fibromyalgia. Our 2007 research survey findings showed that 81% of physicians agree that fibromyalgia is a common, chronic central pain disorder that can cause intense suffering for patients. And instead of dismissing the effect fibromyalgia can have on a person's life, the medical community has shown that fibromyalgia can damage health-related quality of life even more than rheumatoid arthritis and advanced cancer. As a person with fibromyalgia I felt hopeful that the misperceptions and days of patient ridicule were behind us...however the recent story in the New York Times proves that we still have a lot of work to do. 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. We live in a time when health care reform is a daily topic...however we need to recognize that if we as a society feel no remorse about prioritizing which diseases are worthy of our concern, than no matter what health policies and programs we develop, human suffering will continue. We have faith that this will not be the case and we continue to be inspired by the strength and fortitude of the fibromyalgia community. The National Fibromyalgia Association will continue its good works and wants to thank the thousands of physicians, scientists, universities, medical institutions, corporations, professional organizations and government agencies that have worked hard to insure a better future for people with fibromyalgia.
The Unofficial
Hello,
I don't know if you accept posts from lay people but I'm writing anyway. I
have just read the New York Times article in your latest digest and I am
absolutely infuriated! For anyone, doctor or not, to stereotype sufferers of
fibromyalgia as people who are validated and just get sicker is tantamount
to discrimination. I was diagnosed with CFS/ME in 2003 and with fibromyalgia
in 2004. I joined an online support group and took an online course so as to
be able to learn how to function with my disease. To this day I am
constantly searching for ways to improve my health and functionality.
With a combination of prescribed medications, most recently Lyrica,
exercise, acupuncture and herbal supplements I am now able to function at
about 50% of my pre-fibro capacity. This is a vast improvement over spending
75% of my time bed-ridden. Those in the medical community who don't accept
fibromyalgia and CFS/ME as actual diseases ought to start looking at
patients who have improved and are still unable to function at 100%. We
don't want to be sick, we don't accept being sick, and we are looking
forward to the day that there will be a cure for our disease.
Thank you for your time.
Joanne Ezersky
jezersky@optonline.net
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