Posted 3/2/2011 5:24 PM (GMT -6)
"Doctors and medical government people need to know that we are suffering and hopeful for some answers."
while they have made a ton of progress with some really complex issues.
After 40 years of having this I highly agree. Part of this is they don't take it seriously enough as to what it can do to people's lives.
Here is an example.
Drug Approved. Is Disease Real?
Fibromyalgia is a real disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine approved to treat the pain condition, whose very existence is questioned by some doctors.
Then, the experts I am in contact with and I am supporting.
with permission from the IFFGD
Fibromyalgia and irritable bowel syndrome: How real must they be?
(January 27, 2008) Two weeks ago the New York Times published a front page story about a new drug approval for the treatment of fibromyalgia that questioned the validity of functional disorders and implied that both fibromyalgia and irritable bowel syndrome (IBS) are not “real.” In response, IFFGD joined a group of internationally recognized clinicians and scientists in sending a Letter to the Editor at the New York Times. The letter is intended to provide perspective and balance to the article, which was entitled “Drug Approved. Is Disease Real?” We believe it to be a disservice to leave the millions of sufferers with fibromyalgia and IBS with the thought that their medical disorder is not legitimate. The newspaper has not published our response. We present it to you here.
Letter to the Editor, New York Times
We are writing to you as academic gastroenterologists with careers in the scientific investigation and clinical care of patients with gastrointestinal disorders, as well as the executive directors from an international patient advocacy group for the functional gastrointestinal disorders, including irritable bowel syndrome. We are compelled to address the comments made by Alex Berenson in his recent article “Drug Approved. Is Disease Real?” (Jan. 14, 2008). We do understand his concerns that massive direct to consumer marketing efforts for common medical disorders may be a thinly veiled strategy for a pharmaceutical company to obtain a quick profit. Certainly this is an important issue to study. However to adequately explore this question would require attention to the specific features of the therapeutic agent and its risk/benefit ratio, the type of disorder being treated and its health care impact, and the needs and interests of the patient.
The more critical issue we want to address is the impact of Mr. Berenson’s statements which seek to make these points by relegating fibromyalgia or as stated, IBS to a “nebulous” state, something not real. With innuendo, and alleged statements of fact, the story is constructed in a way to influence the reader’s thinking, but in a discriminatory fashion. The very nature of the title which challenges the necessity of treating symptoms not considered legitimate is a disservice to the patients; those who experience the distressing and at times disabling effects of fibromyalgia, IBS or other so-called “functional” disorders. Yet epidemiological surveys and clinical investigations find these disorders to be real: they “breed true” when using standard diagnostic criteria and the results harmonize across all cultures and clinical populations. To deny their legitimacy as medical entities is unacceptable. Since the time of Descartes, scientists and clinicians have had to wrestle with the deficiencies and flaws of the dualistic concepts of illness and disease that permeates Western thinking, and which is so evident in this article: Is the patient’s illness or dis-ease (i.e., the personal perception of ill health) “real” in the absence of currently observable disease pathology or laboratory tests, or not real (i.e, non-existent or possibly “psychiatric”) as implied by Mr. Berenson? Was King George’s madness imagined before we discovered the chemical basis of porphyria?
Mr. Berenson quotes experts to convey “truths.” First, he states that some doctors believe: “...that the disease (fibromyalgia) does not exist, and Lyrica and other drugs will be taken by millions of people who do not need them.” Most of the reasons that patients see physicians are for treatment of specific clusters of symptoms, not diseases. In a recent study (Shaheen et al. Am J Gastroenterology, 2006), the top 6 gastrointestinal diagnoses made in outpatient clinics were heartburn, abdominal pain, gastroenteritis, constipation, dyspepsia (gastritis) and IBS, accounting for 20 million annual visits (followed by hemorrhoids, 1.5 million visits). In fact the most common symptom that patients report, accounting for 12 million visits was abdominal pain followed by diarrhea (3.8 million visits). These symptoms-based diagnoses, much like migraine headache are not characterized by disease pathology; presently, no x-ray or blood test will diagnose them, though medical science may eventually change this. For the individual experiencing these symptoms, their impaired daily function and reduced health related quality of life is very real and requires treatment. To say they don’t have a real disease is a disservice to the patient, and to withhold treatment refutes the basic tenets of medicine: to care for patients.
Second is the concept that these disorders are “nebulous” or poorly defined. Over the last two decades there has been an explosion in research in brain-body science, neurotransmitter function, and brain imaging that is precisely defining the location and mechanisms that explain these symptoms. This is probably the most exciting area in modern medical investigation, and many new drugs are being targeted to treat these mechanisms.
Third, is the presumption that making a diagnosis (for example of fibromyalgia) worsens the condition by encouraging people to think of themselves as sick. Experience shows that providing a diagnostic label usually reduces health care utilization. Patients who suffer from a chronic disorder are relieved to know that a diagnosis exists, rather than have to go through numerous expensive studies that are always negative, or to be stigmatized by family, friends and physicians who tell them “nothing is wrong” or that it’s “psychiatric” or in the least to be freed from the burden of wondering if indeed they really are “crazy” (to experience what they do and to have nothing found).
Finally, there is the statement that the condition is: “...a physical response to stress, depression and economic and social anxiety.” The issue here is not whether or not this is true, but the implied intent that such an association makes the condition less real. Modern science has substantiated over and over that the onset and exacerbations of “real” diseases like tuberculosis, HIV disease, colitis and even certain cancers can occur in response to all these factors.
We are joined by many colleagues committed to the care of patients with functional somatic syndromes and functional gastrointestinal disorders to request that you please put this issue in its proper perspective. We treat real people with real diagnoses.
– Douglas A. Drossman, MD, Professor of Medicine and Psychiatry, Co-Director UNC Center for Functional GI and Motility Disorders, Division of Gastroenterology and Hepatology, University of North Carolina, Chapel Hill, NC, USA
– Lin Chang, MD, Professor of Medicine in Residence, UCLA Department of Medicine,
Division of Digestive Diseases, at the David Geffen School of Medicine, UCLA, Co-Director, UCLA Center for Neurovisceral Sciences and Women’s Health (CNS/WH), Los Angeles, CA, USA
– Enrico Corazziari, MD, Professor of Gastroenterology, Dipartimento di Scienze Cliniche, Universita degli Studi “La Sapienza”, Rome, Italy
– John E. Kellow, MD, FRACP, Associate Professor of Medicine, University of Sydney, Royal North Shore Hospital, Sydney, Australia
– Robin Spiller, MD, Professor of Gastroenterology, Wolfson Digestive Diseases Centre, University Hospital, Nottingham, UK
– Nicholas J. Talley, MD, PhD, MMSc (Clin Epi), Chair, Department of Internal Medicine, Mayo Clinic Jacksonville, Professor of Medicine, Mayo Clinic College of Medicine, Professor of Epidemiology, Mayo Clinic College of Medicine, Jacksonvilee, FL USA
– W. Grant Thompson, MD, FRCPC, Emeritus Professor of Medicine, Division of Gastroenterology, University of Ottawa, Ottawa, Canada
– William E. Whitehead, PhD, Professor of Medicine and Adjunct Professor of OBGYN, Co-Director of the Center for Functional GI & Motility Disorders, University of North Carolina, Chapel Hill, NC, USA
– Nancy J. Norton, President & Founder, International Foundation for Functional Gastrointestinal Disorders, Milwaukee, WI USA
– William F. Norton, Vice President & Co-Founder, International Foundation for Functional Gastrointestinal Disorders, Milwaukee, WI USA
IBS Forum Moderator
I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.
Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.