National Fibromyalgia Association Response to New York Times article
By now most of you have read about the NY Times article about fibromyalgia being a made up, fake disease. And if you're anything like me, you had steam coming out of your ears about it. Well, I'm not a huge fan of the National Fibromyalgia Association because they have begun to be sponsored by major pharmaceutical companies such as Pfizer. However, they do a lot of good work - And I'm glad they stood up for us by responding to this article. Read on for their response.
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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?"
The story by NY Times reporter Alex Berenson can be read at
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outdated opinions and neglects to discuss the research advances of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.
--
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?"
The story by NY Times reporter Alex Berenson can be read at
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.