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Wednesday, April 15, 2015

Your syndrome's missing benefit

The prestigious Institute of Medicine recently issued a comprehensive report on the vexing condition long known as both “chronic fatigue syndrome” and “myalgic encephalomyelitis.” The report, commissioned because of the frustrations engendered by the enigmatic condition for patients and providers alike, runs to 305 pages.

For our purposes here, just a few lines will do. First, the committee recommended that the condition be renamed to: systemic exertion intolerance disease. The functional reference, that people with the condition are generally intolerant of physical exertion, is important. More important, though, is that last word: disease.

The use of “disease” was clearly no accident, as it recurs in the opening paragraph of the summarized recommendations. That paragraph reads as follows: “The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real.’ It is not appropriate to dismiss these patients by saying, ‘I am chronically fatigued, too.’”

Not long after its release, the report was fodder for a poignant New York Times column in which the author, a professional science writer, reveals that she has suffered the condition for the past 16 years. Along with the revelation of some personal elements, the author cites the cynical reactions of physicians to the IOM report, published on Medscape, real estate in cyberspace where our clan gathers to get and share information (when I last checked, there 296 comments on this topic). The column conveys a clear impression of personal hurt, the echo of prior experience, and the apparently familiar addition of insult to injury. Ms. Rehmeyer concludes that a diagnostic test is needed urgently.

The IOM report also emphasizes the need for diagnostic advances, developing specific clinical criteria for the diagnosis in the interim. My principal conclusion differs: it's that we need a profession-wide reminder that the patient is the one with the disease, even when the disease has the misfortune of being a syndrome.

That line, “the patient is the one with the disease,” is from The House of God, a famous, satirical novel about medical training. Published almost 40 years ago, it still resonates.

How could there possibly be need for a reminder that the patient is the one with the disease? Well, it can be hard to feel sorry for anyone but yourself when you are working 100 or more hours a week, and your beeper goes off at 3 a.m. just as you are untying your shoes and hoping for a nap. I am by no means proud to say so, but I recall fighting to remember the patient was the sick one under just those circumstances during my residency. I generally lost that battle while pulling myself back from the cusp of sleep in the on-call room, but had usually won it by the time I got to the ER and looked my new patient in the eyes.

For related reasons, I eventually went into integrative medicine, which I have practiced for the past 15 years. This is not the place for a defense of integrative medicine, or a detailed explanation of its potential merits and liabilities. I will simply say that I went that way because it places comparable emphasis on relief of symptoms we don't necessarily understand, as on treatment of “diseases” we do. Those missions need not be mutually exclusive, but all too often seem to be.

Essentially by definition, a “syndrome” is all about symptoms we don't understand. In contrast to a disease, a syndrome is a condition that has a recognizable cluster of characteristic symptoms (what the patient feels) and/or signs (what the doctor finds on examination or testing), but no known cause, no confirmatory test, and often, no certain approach to treatment. As an example, acute infection with Borrelia burgdorferi is Lyme disease; the symptoms that sometimes linger for years after treatment of Lyme disease constitute a syndrome.

The challenge of living with a syndrome confronts millions of Americans. Roughly 1% to 2% of the U.S. population, or some 4 million people, have fibromyalgia. Chronic fatigue syndrome affects approximately another million. As many as 50,000,000 of us have irritable bowel syndrome. Nearly 40,000,000 women have premenstrual syndrome. Interstitial cystitis plagues some 700,000 women, and nearly 28 million adults in the U.S. have a migraine headache syndrome.

If you are a member of the enormous population that suffers from one or more syndromes, you can get good medical care. But you may have to work extra hard to do so, and you, too, are apt to suffer the addition of insult to your injury along the way.

Because a disease has a cause that is known to one degree or another, it is often verifiable through diagnostic testing, such as blood tests or X-rays. Syndromes often must be diagnosed on the basis of symptoms and signs alone, in the absence of any characteristic laboratory test findings. They are often called “diagnoses of exclusion,” meaning a syndrome is diagnosed when testing rules out everything else. To some extent then, the diagnosis of a “syndrome” leaves room for doubt.

Syndromes tend to be more variable than diseases, probably because the same pattern of symptoms and signs may derive from multiple causes. It is likely that in many cases what is currently diagnosed as one syndrome will someday, when we know more, actually turn into several related diseases. This has happened before. A variety of different types of arthritis that can now be diagnosed quite precisely as rheumatoid arthritis, or osteoarthritis, or Lupus arthritis, were once a syndrome of joint pain all lumped together under the title of “rheumatism.”

But perhaps the most important difference of all between disease and syndrome is the legitimacy attached to them. The lack of confirmatory test results for a syndrome means that there is nothing to “clinch” the diagnosis. Because the causes of syndromes are unknown, treatment is often uncertain, too, and results often less than gratifying.

Doctors don't much care for conditions we don't understand well, can't treat effectively, and can't even confirm with a blood test. The frustration that results often translates into one of medicine's more common, and most regrettable missteps: blaming the victim. Patients with syndromes are often overtly, or at least covertly, blamed for their symptoms and engender an “it's all in his/her head” attitude in their doctor.

That the often truly impressive prowess of modern medicine is ill adapted to the misfortunes of the merely syndromic is not the truly grave problem here. The problem is the cynicism reflected in those comments on Medscape. The problem is failure to recall that the patient is the one with the disease, even when the disease is a syndrome.

The IOM clearly recognizes this, and has lent its imprimatur to the legitimacy of systemic exertion intolerance disease. The report will likely accelerate the quest for objective diagnostic tests, and effective therapies. Those with the condition will certainly benefit from such advances.

But there are many other syndromes out there, and millions of others suffering the conjunction of insult to injury. They, too, would benefit from diagnostic tests and better treatments. But there is another benefit they are missing and need. It requires no IOM report, nor Nobel Prize. It requires only compassion, and humility. It requires only the acknowledgement that it's not the patient's fault their symptoms have not yet found an abnormal scan or blood test to call their own, the recollection that the patient is the one with the disease, even when the disease is “just” a syndrome.

It is the benefit of the doubt.

David L. Katz, MD, FACP, MPH, FACPM, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care. He is a board certified specialist in both Internal Medicine, and Preventive Medicine/Public Health, and Associate Professor (adjunct) in Public Health Practice at the Yale University School of Medicine. He is the Director and founder (1998) of Yale University's Prevention Research Center; Director and founder of the Integrative Medicine Center at Griffin Hospital (2000) in Derby, Conn.; founder and president of the non-profit Turn the Tide Foundation; and formerly the Director of Medical Studies in Public Health at the Yale School of Medicine for eight years. This post originally appeared on his blog at The Huffington Post.

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Blog log

Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Auscultation
Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Iowa City, IA, with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

DrDialogue
Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

FutureDocs
Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

KevinMD
Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

Prescriptions
David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

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