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Responses to the New York Times Article
The front-page article by New York Times reporter Alex Berenson (January 14, 2008, "Drug Approved. Is Disease Real?") has drawn numerous comments.
Click the link below to read the article:
http://nytimes.com/2008/01/14/health/14pain.html?em&ex=1200459600&en=bac45d5aff5a17d7&ei=5087%0A
To send a Letter to the Editor, email to letters@nytimes.com or fax to 212-556-3622.
Lynne Matallana's Letter to the Editor has been published in the NY Times January 18 issue. You can review her response, as well as several others, by clicking on the link below.
For more responses to Berenson's article, see the comments listed below.
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 However, the article presents outdated opinions and neglects to discuss the research advances of the last decade and instead focuses on the opinions of a few medical outsiders who still do not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.
Condition Poorly Studied
Re: Drug Approved. Is Disease Real? (Jan. 14)
For decades, the women's health community has heard the same refrain: “It’s in her head. It’s not real.” Today, those criticisms are leveled at fibromyalgia. Not long ago, they were aimed at premenstrual dysphoric disorder and restless leg syndrome, two conditions for which researchers have now identified genetic markers for predisposition. The underlying problem for these and other conditions is a lack of research. Conditions that affect women differently, exclusively or predominantly are often poorly studied. As a result, we don’t know much about fibromyalgia. We do know the pain fibromyalgia patients experience is real. Their plight deserves the attention of the research community. Until science unravels the mystery of this syndrome, we have a moral obligation to help patients cope with their symptoms as best as possible with the help of their doctors and treatments approved safe and effective.
Phyllis Greenberger, MSW
President and CEO, Society for Women’s Health Research
Washington, D.C.
Doctors Respond to Front-Page Article
We are practicing physicians who care for fibromyalgia patients—and we are outraged by Alex Berenson’s article, "Drug Approved. Is Disease Real?" (1/14/2008).
Short answer: yes. Fibromyalgia is absolutely real.
The pain our patients feel is all too real.
Research into the etiology of this chronic pain disorder is also very real. With the availability of new technology to evaluate pain processing in the nervous system, it is clear that there is a hyper-sensitization of the pain pathway in fibromyalgia.
The broad impact of fibromyalgia is real. The majority of people diagnosed with fibromyalgia are women, but juvenile fibromyalgia is consistently being diagnosed, and men of all ages are also often diagnosed with FM. Fibromyalgia can strike anyone at any age, of any ethnicity.
And the prejudice against these people, who struggle with an “invisible disorder,” is all too real, as Berenson himself proves. People with fibromyalgia tend to look healthy, and conventional diagnostic tests are typically normal. Research efforts to develop more definitive, objective testing are ongoing.
Berenson writes that some doctors “say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate.” We are not familiar with such a stance, and question its veracity: how can putting a name to one’s chronic pain, one’s sleep difficulties, one’s debilitating fatigue, worsen suffering? We have witnessed, in patient after patient, overwhelming gratitude after receiving a diagnosis of fibromyalgia. Once patients know what they are dealing with, they can step off the merry-go-round of doctor visits and begin moving forward, developing successful symptom management strategies.
While we applaud The New York Times for bringing front-page attention to fibromyalgia, we decry the irresponsible reporting that focuses on a threadbare controversy and neglects significant mention of research that continues to bring greater visibility and acceptance to this disorder, which affects millions of Americans. This article not only makes a mockery of the very real pain that patients feel, it denigrates those of us who have devoted our careers to caring for these people, who deserve nothing but our support.
Stuart L. Silverman MD FACP FACR
Attending Physician Cedars-Sinai Medical Center
Clinical Professor of Medicine and Rheumatology
David Geffen School of Medicine UCLA
Medical Director, OMC Clinical Research Center
David S. Silver, MD
Associate Clinical Professor of Medicine,
UCLA School of Medicine
Former Clinical Chief of Rheumatology, Cedars-Sinai
Andrew J. Homan, MD
Assistant Clinical Professor Medicine,
University of Washington
Rheumatologist, Valley Medical Center, Seattle
Terence Starz, MD
University of Pittsburgh School of Medicine
Arthritis and Internal Medicine
From the American Pain Society
January 17, 2008
The New York Times
Letters to the Editor
Dear Editor,
Skepticism and cynicism are nothing new to those who suffer from chronic pain, especially fibromyalgia syndrome. On Jan. 14, New York Times writer Alex Berensen delivered a cruel blow to anyone with fibromygia by characterizing the disease as a phantom disorder promoted by the pharmaceutical industry to sell prescription medications. The article could give credence to and re-energize cynics and skeptics who have stigmatized pain patients, especially those who deny coverage for pain management.
What Mr. Berenson failed to report is there is abundant scientific evidence to validate fibromyalgia as a legitimate pain syndrome. In 2006, the American Pain Society issued a peer-reviewed clinical practice guideline on fibromyalgia pain management based on an exhaustive review of the scientific literature, performed by a prestigious expert panel. The guideline recommends that physicians diagnose fibromyalgia syndrome only after performing a complete joint examination, manual muscle strength testing and a neurological exam. Because the impact of fibromyalgia can be so pervasive, management of the syndrome should be holistic and multidisciplinary and employ both pharmacologic and non-pharmacologic strategies. Treatment for adults and children should focus on restoring physical and emotional function.
Whether or not any of the medications approved for treating fibromyalgia are effective should be determined by fibromyalgia patients and their doctors. Pain is a complex phenomena, in which some patients respond to treatment and others do not. We do know that denying the existence of any pain problem and describing a legitimate pain syndrome like fibromyalgia as an imagined disorder is not the way to provide effective relief to those who live every day with real, persistent pain.
Judith Paice, PhD, RN
President, American Pain Society
Time to Put Outdated Beliefs to Rest
To the Editor,
Your recent article on fibromyalgia (FMS) portrays the controversy as a
matter of opinion between physicians and patients. This misrepresents
the illness as having no documented evidence for its existence. There
are a number of widely accepted medical conditions which are based on
patient symptoms and have no objective test available, including
migraine headaches, low back pain, and depression.
Numerous studies have shown alterations in biochemical and neurological
functioning in FMS, including high concentrations of chemicals
associated with pain in the spinal fluid, increased activity in
pain-processing nerves in the spinal cord, and marked increases in activity in the
brain areas where pain is perceived. These studies are irrefutable, and
those doctors who persist in believing that FMS is a purely
psychosocial condition do so in obvious disregard of the facts.
Fibromyalgia patients have been denigrated long enough. It is time to
put these outmoded and judgemental beliefs to rest.
Michael McNett, MD
Owner and Medical Director
Fibromyalgia Treatment Centers of America
Offer Hope, Not Doubt and Questions
Yesterday’s New York Times article, “Drug Approved. Is Disease Real?” has created quite a stir with both patients whose lives are impacted by fibromyalgia, and the health care community who must diagnose and treat this common disorder. Here at Oregon Health & Science University (OHSU) we have a quarter century of experience in researching and treating fibromyalgia. Yesterday’s article was a poorly informed opinion piece that reminded us of the articles when we and other researchers first started on the quest to understand this disorder in the 1980s. It, unfortunately, ignored much of the scientific progress that has resulted from this research and the current widespread acceptance of fibromyalgia as a common, well defined chronic pain disorder.
For instance fibromyalgia is recognized as a diagnosable disorder by the National Institutes of Health, the American Medical Association, the American College of Rheumatology and the Social Security Administration. The American Boards of Internal Medicine has fibromyalgia on the curriculum for physicians seeking Board Certification. Epidemiological studies worldwide provide a similar fibromyalgia prevalence of 2-7%, some 10 million people in the US suffer the debilitating effects of fibromyalgia. Over 4,000 scientific and clinical papers have been published on this topic since 1980.
The sub-title “some doctors dispute the existence of a pain” is especially duplicitous. One does not have to be a doctor to know that pain is “real”, even if it doesn’t show up in an imaging study or blood test. Pain is always a subjective sensation, whatever its cause. Do those doctors who question the reality of pain without a diagnostic test also dismiss the reality of headaches or menstrual cramps?
There is now undisputable scientific evidence that fibromyalgia patients have a functional disorder of their central nervous system in which pain and other sensations are amplified before reaching the conscious areas of the brain. The quoted opinion that fibromyalgia patients’ problem is “an inability to adapt to the vicissitudes of life”, is a generalization that has no scientific basis. All chronic pain disorders take a psychological toll as well as a physical one; those who adapt well fare better in life, but still have pain.
Just like diabetes and high blood pressure there is no cure for fibromyalgia at this time, but there are some newer treatments, such as Lyrica, Cymbalta and milnacipran, that provide scientifically validated improvements in pain and other symptoms. Castigating the pharmaceutical companies who have spent millions in developing drugs because they “hope to make a profit”, is naïve and disingenuous.
The symptoms of fibromyalgia are common and real—and it is for this very reason that information to the public should be offering hope, not doubts and questions.
Robert Bennett MD, FRCP, FACP
Professor of Medicine and Nursing
Kim Dupree Jones PhD, FNP
Associate Professor of Nursing
Oregon Health & Science University
Fibromyalgia Association UK
Official Statement
On the 14th January 2008, the New York Times published a controversial article on Fibromyalgia by Alex Berenson, titled “Drug Approved. Is Disease Real?” Fibromyalgia Association UK (FMA UK) welcomes the raised awareness of Fibromyalgia that a front page story on a world-renowned newspaper such as the New York Times will bring. However, the article itself gives a one-sided and unrealistic perspective of Fibromyalgia and presents out-dated ideas about the condition.
Fibromyalgia is a condition characterised by chronic widespread pain and chronic fatigue, that is recognised by the World Health Organisation, the American Medical Association and the NHS. Alex Berenson’s article presents outdated opinions as if they were current thinking and neglects to mention the evidence gathered and research done into Fibromyalgia over the last 20 years. By concentrating on the opinion of a few medical outsiders who do not believe in the legitimacy of Fibromyalgia, the New York Times article does a disservice to the millions of people worldwide who are living with the condition.
Fibromyalgia patients often struggle with the outdated view that the condition isn’t real because they can’t present their doctors and the people around them with test results showing the condition. However, medical research into Fibromyalgia has discovered many clinical findings with the condition, such as a lack of dopamine the neurotransmitter involved in Parkinson’s Disease - in the brain and high amounts of a chemical called substance P, that transmits pain signals. Unfortunately the tests needed to show these changes in a person with Fibromyalgia are often expensive and difficult, and so are rarely used outside of research. Contrary to what is said in the New York Times article, although the cause of Fibromyalgia is as yet unknown, the physiological changes that lead to the pain of the condition are well documented. Fibromyalgia patients do not tolerate pain stimuli as well as people without Fibromyalgia for the simple reason that, with Fibromyalgia, all pain stimuli hurts more: a simple hug can be excruciatingly painful.
Scientific studies have also been done that have found Fibromyalgia has more of an impact on patients’ lives than other chronic pain conditions or more widely known chronic illnesses, such as rheumatoid arthritis and osteoporosis. Fibromyalgia is a debilitating condition that often has a devastating effect on patients and their families. Patients often struggle to obtain appropriate treatment and this fact isn’t taken into account in Alex Berenson’s article when it suggests that Fibromyalgia patients tend to get worse after diagnosis: they tend to get worse before diagnosis too and often continue to do so because of a lack of appropriate treatment. FMA UK can also provide countless examples of Fibromyalgia patients who do not sit around obsessing about their symptoms, but instead are leading productive lives or are working hard to help raise awareness of this surprisingly common, but little known, condition.
Outraged and Thankful
I was discouraged and outraged when I read the recent New York Times article by Alex Berenson, "Drug Approved. Is Disease Real?" I was further incensed after reading the comments following re-prints of this article in other news outlets, which indicated that many people still believe that fibromyalgia is, in fact, not real, and some even claim it as an excuse for laziness or drug-seeking behavior! I sent an e-mail directly to Alex Berenson, and also e-mailed the NY Times, protesting this article. However, after visiting the National Fibromyalgia Association website and reading the NFA's response to this article, I was cheered considerably. I just wanted to thank the association and its president for this factual and thorough response, and also for helping me to remember that I am not alone and that my pain is real. I really appreciate everything you have done and are continuing to do.
-Melissa Petreaca
Spend Some Time in 'Our Shoes'
I guess I should be grateful that fibromyalgia has even been mentioned in your paper especially on the first page. However, as a fibromyalgia sufferer for 10 years I found you had not really done your research well; it is outdated and has not mentioned the outstanding research now being carried out. You would have been better off speaking with Dr .Dan Clauw at length and others from the Johns Hopkins University, the University of Michigan and the National Institute of Health and the Food and Drug Administration who have a true and fundamental understanding of what fibromyalgia is and are generally interested in finding a “cure." Instead you referred to the others who have outdated opinions and in fact do not even believe in fibromyalgia.
I found Dr. Frederick Wolfe’s and Dr. Nortin Hadler’s comments humiliating and way off base. I should also point out they are rheumatologists and fibromyalgia should not be treated by rheumatologists rather neurologists. They understand the nerve pain paths better. They take a totally different view. Dr. Norton Hadler commented “fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick”. I and many others do not refer to ourselves as being "sick” and the only good thing to come out of being diagnosed with fibromyalgia is that at last you have a name for what is wrong with you. It is relief it does not make you worse as Dr Hadler suggests. I dispute his statement that “we live under a cloud and being around the medical establishment makes us get sicker." What utter rubbish.
Dr. Frederick Wolfe is wrong to suggest that the condition is a physical response to stress, depression, and economic and social anxiety. Again, what utter rubbish. I developed this disorder in the prime of my life, everything in my life was going wonderfully well. However, I have been given a challenging disorder to deal with, which has changed my life. I am a professional woman, who owns an extremely successful business. Obviously, I had to bring on more staff. But, although I have had severe fibromyalgia ,I have had to make the best of things.
To say we obsess over aches that other people simply tolerate is not correct. It is an outrageous statement to make. I have a high threshold to pain and can operate with the pain. However, with members of my family and friends I have seen incidents (especially with the males) that have shown they have a very low-pain tolerance, and if some of them had fibromyalgia, I do not know how they would cope.
I live in Brisbane, Queensland in Australia. I do everything I can to get rid of all of my symptoms Japanese Acupuncture seeming to be the best so far.
The worst thing your article has done to people like myself is to put in the minds of others that this syndrome is all “in our minds” what a terrible insult to myself. Sometimes I wish that the people who criticize us could be in our shoes for one day and one night and see what they have to say afterwards.
Susan Sole
The Pain IS Real
Fibromyalgia is a condition of chronic widespread pain. The pain is constant and debilitating and affects 2-10% of the population. This translates into an estimated 10 million Americans.
Fibromyalgia affects predominately women ages 30-50 at symptom onset. It also occurs in men and children, which seriously impacts their development and education.
While pain is the main symptom, sleep deprivation leads to severe fatigue, and cognitive difficulties are common. Many other conditions may be present including Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Restless Legs Syndrome and sensory overload to name a few.
The front page of the New York Times printed an article January 14, 2008 entitled, "Drug Approved. Is Disease Real?" The contents of which stated opposite opinions, creating heated letters to the editor and angering those of us who suffer in pain daily. Several radio talk shows aired in the days following this explosive article.
I have suffered with fibromyalgia for 10 years, but only received a diagnosis 3 years ago. This scenario is common. I am also a registered pharmacist having practiced for more than 25 years. As a healthcare professional I am in a unique position to critically review the literature. Scientific data of diagnostic imaging results and positive responses to lifestyle changes and drug therapies prove fibromyalgia is real. A change in chemicals in the brain alters the way pain is felt. As a patient I live with the pain. Activities as a wife and mother of two teenagesrs are affected.
In June 2007, the FDA approved the first drug (pregabalin or Lyrica) for the official indication to treat fibromyalgia, thus validating the disease.
I won a scholarship with the National Fibromyalgia Association (NFA) to attend a Leadership training session in Washington DC in August 2007. After successful completion of the course I am now a member of the NFA International Leaders Against Pain Coalition.
Since then I have concentrated on increasing awareness of fibromyalgia to the public, medical doctors and allied health professionals with several publications and upcoming lectures.
In light of the recent controversal New York Times article I feel the time is NOW to come forward to tell my story about living with fibromyalgia.
It is a significant healthcare issue.
Fibromyalgia is definitely real and there are many, some very disabled, with this condition and don't know they have it.
Janice Sumpton RPh, BSc.Phm
News vs. Opinion
In a front-page article, the Times doubted the existence of the disease "fibromyalgia" - at least, doubted that it was anything more than the somatic expression of personal problems.
This type of article makes me wonder what sources the Times would consider to be authoritative in news stories, as the front page has traditionally been the locale for news, not opinion.
According to the Arthritis Foundation, "Fibromyalgia (fye-bro-my-AL-jah) is a syndrome characterized by long-lasting widespread pain and tenderness at specific points on the body...This condition is referred to as a syndrome because it's a set of signs and symptoms that occur together with no known cause or identifiable reason. Although considered an arthritis-related condition, fibromyalgia is ... considered a rheumatic condition because it impairs the joints and/or soft tissues and causes chronic pain. Fibromyalgia is an
especially confusing and often misunderstood condition. Because its symptoms are quite common and laboratory tests results generally arenormal, people with fibromyalgia were once told that their condition was 'all in their head.' However, medical studies have proven that fibromyalgia does indeed exist, and it is estimated to affect about two percent of
the U.S. population today."
Let's go to the federal government, then. Surely there should be some type of authoritative information there.
According to the U.S. Centers for Disease Control, fibromyalgia is one of five basic categories of arthritis. See <http://www.cdc.gov/arthritis/arthritis/types.htm"Fibromyalgia is a syndrome predominately characterized by widespread muscular pains and fatigue. The causes of fibromyalgia are unknown; however researchers hypothesize that genetics and physical and
emotional stressors are possible contributory factors to the development of the illness. There are difficulties in diagnosing fibromyalgia, since its clinical picture can overlap other illnesses and there are no definitive diagnostic tests. Patient education, pharmacologic agents, and other nonpharmacologic therapies are used to treat fibromyalgia. Exercise has been found to improve outcomes for people with fibromyalgia."
The reader is referred to the NIH for more information. See <http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp
"Fibromyalgia syndrome is a common and chronic disorder characterized by widespread muscle pain, fatigue, and multiple tender points. ... Tender points are specific places on the body-on the neck, shoulders, back, hips, and upper and lower extremities-where people with
fibromyalgia feel pain in response to slight pressure... Like arthritis, however, fibromyalgia can cause significant pain and fatigue, and it can interfere with a person's ability to carry on
daily activities. Also like arthritis, fibromyalgia is considered a rheumatic condition....
[which] means a medical condition that impairs the joints and/or soft tissues and causes chronic pain."
There is considerably more material at the NIH's website on fibromyalgia. The article failed to mention any of this.
The author's opinion that "the disease does not exist" would have been more
appropriate on the opinion page than the news section. I personally found it worrisome that a male author and a few male physicians would be so quick to dismiss a disease syndrome that primarily impacts women, and that the Times would in turn be so quick to embrace these particular opinions on the subject.
Perhaps it is time to change the Times' slogan to "All the opinions that are fit to print."
Mary M. Schweitzer, Ph.D.
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