Doctors Respond to New York Times Article
NY Times Article Prompts Response from Medical Community:
Story Questions Validity of Fibromyalgia
Fibromyalgia Network has been hit with calls and e-mails from upset patients following a front-page article printed in the New York Times on Jan. 14, 2008 that questions the very existence of fibromyalgia (FM).
Patients feel that the article written by Alex Berenson with the headline “Drug Approved. Is Disease Real?” stirs up controversy that no longer exists. Statements such as, “diagnosing the condition actually worsens the suffering by causing patients to obsess over their aches that other people simply tolerate,” strike a blow against the progress made in the field and belittles patients by questioning the validity of the illness.
What is interesting is that two months ago the Times ran a series of articles that focused on chronic pain including fibromyalgia. The Nov. 6, 2007 article, “Living With Pain That Just Won’t Go Away,” by Jane E. Brody, recognized chronic pain as an invisible, serious, and often debilitating problem.
The Berenson article, however, was a complete turnaround. It not only disturbed patients with fibromyalgia, but also drew response from researchers, scientists, and doctors in the field. Below are some of their comments.
False Statements by Naysayers
Unfortunately Drs. Wolfe, Hadler, and Ehrlich have been saying the same thing for 20 years. When they began making these pejorative and uninformed comments about fibromyalgia and the people who suffer from it, they could be “excused” for these comments because there were very few scientific studies regarding fibromyalgia.
We now know that the statements these doctors made are actually false. Data show that after being diagnosed with fibromyalgia, people feel better, and their health care utilization goes down, likely because they no longer have to keep searching for what is wrong with them.
However, we must all realize that we will never convince the Wolfe’s, Hadler’s and Ehrlich’s of the world that fibromyalgia is a legitimate disease by using scientific data. Scientists develop hypothesis, test them, and then discard them if they are found not to be true. These three doctors had formerly been scientists, but are not approaching fibromyalgia as such. They have firmly held personal beliefs that will never change despite overwhelming scientific data. Patients should do their best to not focus on the fact that the glass is seven-eights empty to these three doctors. To the majority of health care providers in the U.S. the glass is becoming half full. They feel this is a real disease and they are beginning to learn how to treat it. We continue to make tremendous scientific advances in the study of pain and fibromyalgia, and even more effective treatments are just around the corner.
Daniel Clauw, M.D.
Professor of Medicine in the Division of Rheumatology
Director of the Chronic Pain and Fatigue Research Center
University of Michigan in Ann Arbor
Science Validates Fibromyalgia
Alex Berenson’s article (New York Times, Monday, Jan. 14, 2008) on fibromyalgia (FM) was not well supported by the facts. In addition, only one (Dr. Clauw) of the medical experts quoted by Mr. Berenson, is currently involved in FM research. Importantly, many if not most of the arguments raised about the validity of FM in the New York Times article, have been refuted in the past.
In recent years the discussion amongst chronic pain researchers has almost entirely moved away from questioning the validity of chronic FM pain to exploring the mechanisms of this heterogeneous illness. It is now well accepted that the majority of FM patients show evidence for abnormal pain processing (peripheral and/or central sensitization, inefficient pain inhibition), dysfunctional hypothalamic-pituitary-adrenal axis (HPA) and autonomic nervous system, and increased levels of neuromodulators (substance P, NGF) in their spinal fluid, just to name a few. Generally, FM pain is strongly associated with relevant neurobiological abnormalities known for their important contribution to pain processing.
Chronic pain is difficult to treat and drugs alone achieve only moderate pain reduction despite a wide variety of available medications, including pregabalin (Lyrica).
Lyrica, however, is the first FDA approved FM medication rigorously tested in large randomized clinical trials and thus represents an important advance.
Therefore, I strongly recommend a follow-up article in the New York Times that offers a more accurate view of the current knowledge on fibromyalgia.
Roland Staud, M.D.
Professor of Medicine, Division of Rheumatology
University of Florida in Gainesville
Article a Major Disservice to Millions of Americans
Too many doctors and apparently one journalist, the author of the (New York Times, Monday, Jan. 14, 2008) front page article questioning whether fibromyalgia is a disease, are medical materialists. By this, I mean that they believe that if they cannot hold an abnormal lab test in the palms of their hands, then, the patient has nothing wrong. By taking this stance, they allow countless numbers of patients to fall between the cracks of classical medicine—left to their own devices or to the burgeoning alternative medicine industry.
When I took the Hippocratic Oath, I did not pledge to take care of only patients with heart attack, cancer and stroke. I pledged that I would do everything in my power to help reduce suffering and improve health. Putting an article on the front page of the New York Times that will make doctors, relatives and friends of millions of Americans with fibromyalgia say that their symptoms are just a “physical response to stress, depression, and economic and social anxiety” is doing them a major disservice. This is an opinion that ignores the published literature and is the same as saying that nothing is wrong. It means that the doctor chooses not to believe the patient and is uninterested in helping him or her. This is the antithesis of my view of medicine.
The argument as to why fibromyalgia is not a disease is that “no biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological cause.” But the same criticism can be leveled on migraine, some forms of epilepsy, depression, schizophrenia and torsion dystrophy.
Perhaps the word “disease” is the problem. It might be better if we substituted the phrase “clinical disease entity” or syndrome. In the 18th century, there were no diseases—just clinical disease entities. Medicine has advanced well beyond this category, but it is important to remember that syndromes still exist. The torsion dystrophy example is particularly interesting. It’s a syndrome where young Ashkenazic Jewish boys, among others, develop odd muscle movements which eventually leave some unable to walk. In the 40s and 50s, these children were psychoanalyzed into their wheelchairs because all the experts said the problem had to be psychological. Today, we know something about the underlying pathophysiology and genetics of this disease, and it is a disease—despite all standard lab tests being normal.
That’s the story too for fibromyalgia. Our laboratory has shown that the brain of the patient with fibromyalgia shows pain when the body is touched with a warm rather than a painful stimulus. Other laboratories have shown that following a painful stimulus, the FM patient’s brain feels non-painful stimuli as pain; many other studies on biological abnormalities in fibromyalgia exist. Moreover, the existence of several classes of drugs that do provide substantial pain relief should make it clear that the patient has an underlying problem that is treatable.
The real problem here is that discussion of a significant health problem, widespread pain with body-wide tenderness, has deteriorated to a polemic. Rather than argue points of view, we need more federally funded, peer-reviewed research. Based on the successes in the history of medicine, research has always paid off. It will here too.
Benjamin H. Natelson, M.D.
Professor of Neurosciences
Director, Pain & Fatigue Study Center
University of Medicine & Dentistry of New Jersey
Skeptics Will Always Exist
Alex Berenson’s January 14 article on the front page of the Times queries, “Is [Fibromyalgia] Real?” How can Berenson – a young journalist and novelist with no obvious medical credentials – presume to challenge whether fibromyalgia (FM) is real when scientists with greater knowledge and understanding have already concluded that it is real?
The diagnosis of FM is accepted by such venerable institutions as the National Institutes of Health, the American College of Rheumatology, the FDA, and the World Health Organization. Those who suffer with FM know it’s real; those with FM pain that interferes with sleep, and movement, and concentration know it’s real; those who want and need to work but are disabled by FM know it’s real.
It is distressing that a few individuals such as Fred Wolfe and Nortin Hadler have been given such credence in the Times when the vast majority of authorities think otherwise. These men cling to an antiquated philosophy that says, “If you can’t see something obviously wrong with a person, then the symptoms must be in the head.” In a sense, FM is an invisible illness. You cannot see pain, or sleep disruption, or bone-crushing fatigue—but these are all real.
In addition to fibromyalgia, Hadler for one also discredits carpal tunnel syndrome and chronic low back pain. For those who have these painful and disabling problems, they are as real as rain. Other skeptics disregard “invisible” illnesses such as irritable bowel syndrome and PMS.
Skeptics will always exist. There are some who believe that AIDS is not real. As is the case with FM, the skeptics are clearly wrong but entitled to their beliefs. They don’t usually get a forum on the front page of the New York Times, however.
Berenson’s article is clearly one-sided, giving a few skeptics a greater voice. I sincerely hope you will balance their perception with the wider-held perspective that FM is a real disease and a real cause of morbidity and disability. As a specialist who treats men and women with FM, I am grateful for the companies that research medications for the management of this disorder.
Charles W. Lapp, M.D.
Director, Hunter-Hopkins Center, Charlotte, N.C.
Assistant Consulting Professor, Duke University Medical Center, Durham, N.C.
Treatments Including Medications Are Beneficial
The problems associated with fibromyalgia are very real to patients and to the clinicians who care for them. We have sorely needed research into better treatments, and we believe patients have benefitted from the results of recent large, well controlled clinical trials. While every medication has potential side effects, in our practice, the benefits of new medications like Lyrica and Cymbalta have outweighed these risks for most patients. We have found that the combination of medical treatment and other approaches such as exercise and therapy have improved the outcome of our patients. We hope that there is continued support for research into the pathophysiology and treatment of this common, often disabling illness.
Lesley M. Arnold, M.D.
Director, Women’s Health Research Program
University of Cincinnati
Fibromyalgia is Real
There is no question among informed medical opinion that fibromyalgia is a real and physical illness. Like almost all chronic physical illnesses, fibromyalgia can often trigger or exacerbate anxiety or depression as a result. Similarly, chronic emotional distress can exacerbate fibromyalgia, as it often does for almost all physical health problems.
Increasingly sophisticated and objective research studies by Clauw, Natelson, and others have used functional MRI and other scientific tools to prove unequivocally that fibromyalgia patients, by and large, truly feel the pain that they report. This pain correlates closely with neurophysical abnormalities that can be measured in the brain.
Richard N. Podell, M.D., M.P.H.
Clinical Professor, Robert Wood Johnson Medical School
University of Medicine and Dentistry of New Jersey
Article Ignores Science, Research
The 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 percent, some 10 million people in the U.S. 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 these drugs, because they “hope to make a profit,” is naive 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 M.D., F.R.C.P., F.A.C.P.
Professor of Medicine and Nursing
Kim Dupree Jones Ph.D., F.N.P.
Associate Professor of Nursing
Oregon Health & Science University
New York Times Article Incomplete
The New York Times article on fibromyalgia (Jan. 14, 2008) by Alex Berenson accurately reported that a subgroup of rheumatologists question the validity of the diagnosis of fibromyalgia. The article is particularly striking because it accurately notes the concerns regarding fibromyalgia that Dr. Frederick Wolfe, lead investigator in the 1990 study that developed standardized classification criteria for the disorder, has expressed in scholarly journals and medical research meetings for several years.
However, the article presents an incomplete history of the medical research that has lead to the development of pharmacologic interventions that reliably reduce pain and improve the quality of life of patients with fibromyalgia. First, the article suggests that only doctors who treat patients with fibromyalgia and patient advocacy groups estimate the prevalence of the disorder to be 2 to 4 percent of the adult population. These prevalence estimates were produced by two population-based, epidemiologic studies performed by independent investigators (one of which was Dr. Wolfe) in the U.S. and Canada. Both of these studies were published in peer-reviewed medical journals and there has been no controversy in the medical literature regarding the validity of the findings that were reliably produced by these investigations.
Second, the article suggests that there is little evidence that fibromyalgia is a valid medical disorder. If this were true, it would be appropriate to question the development of drugs for a large number of patients who simply “do not adapt” to the vicissitudes of normal life. However, this line of reasoning ignores the fact that the National Institutes of Health has played a key role in improving our understanding of the physiologic mechanisms that underlie the symptoms of fibromyalgia through its support of peer-reviewed research in this area.
In 1991, the NIH made its first request for research proposals regarding the pathophysiology of fibromyalgia. This request resulted in funding of four peer-reviewed proposals. The results produced by these studies, as well as those of a growing number of researchers whose work is supported by the NIH and private foundations, has greatly improved our understanding of the mechanisms underlying this disorder. For example, there is consistent evidence that there are important similarities in the mechanisms that underlie chronic neuropathic pain, such as pain that afflicts some people with diabetes or nerve injury, and the chronic pain associated with fibromyalgia. In all these conditions, sensory input from deep tissues are enhanced at the spinal cord level so that low intensity, sensory stimuli that do not produce pain in healthy people do produce pain in people with these disorders. Thus, it was quite reasonable for the pharmaceutical industry to perform a series of clinical trials to determine whether drugs such as Lyrica, that initially were developed to treat pain associated with diabetic neuropathy, would also reduce pain among patients with fibromyalgia.
It is well-known that behavioral, environmental, and psychological factors influence the pain responses of healthy individuals as well as people with medical conditions. Thus, physicians, medical researchers, and the pharmaceutical industry recognize that pharmacologic agents for treating patients with chronic pain often are most helpful when they are used as part of interdisciplinary, comprehensive treatment programs that address multiple factors that influence patients’ health and quality of life. This recognition, however, does not negate the medical necessity nor the clinical efficacy of pharmacologic agents for chronic pain associated with fibromyalgia and similar medical conditions.
Laurence A. Bradley, Ph.D.
Professor of Medicine
Division of Clinical Immunology and Rheumatology
University of Alabama at Birmingham
Voice Your Opinion!
Members of the Fibromyalgia Network and anyone else who would like to respond to the front-page New York Times article, “Drug Approved. Is Disease Real?” that was printed Monday, Jan. 14, 2008, can send comments to the Public Editor Clark Hoyt, who is driven by what readers care and complain about, at firstname.lastname@example.org or call (212) 556-7652. You also are encouraged to send a copy of your comment to News Department at email@example.com and the Managing Editor at firstname.lastname@example.org.
Please identify that you are responding to the Jan. 14, page 1 article on fibromyalgia and include your name, city, and state. Feel free to include in your response a few of the valid points made by the experts and ask at the end of your e-mail that the editors at the New York Times publish a quality article on fibromyalgia, its pain and symptoms you struggle with daily.
In addition, please send a copy of your e-mail to the Fibromyalgia Network at email@example.com so we can understand and enjoy your response, too.