You are invited to a Panel Discussion: CCTV Channel 17
294 No. Winooski Avenue, Burlington, VT
7:00 – 8:00 PM
This will be "Live" television with a studio audience.
A Disease By Any Other Name...
30 years ago, it was nationally proclaimed to be, "Yuppie Flu," and thus began a decades-long history of malfeasance about a collection of immune system dysfunctions that has disabled, and made homebound, tens of thousands in this country alone. From a national hysteria to the condescending "chronic fatigue syndrome", it has been the subject of jokes, ridicule and outright scorn. In Canada and Europe it's Myalgic Encephalomylitis, in the United States it is currently called ME/CFS, despite the Institute of Medicine's effort to rename it SEID, or "Systemic Exertional Intolerance Disease". Inadequately taught in medical schools, it is dismissed as a non-existent illness, or worse yet misdiagnosed as a somatoform disorder in doctors' offices across the land. Patients, in desperate straights, search for a glimmer of medical help that simply isn't there.
In the first Gulf War, 36 years ago, thousands came home terribly ill, and only recently has their illness been recognized as real. Lyme disease and other tick-borne illnesses have become an incurable, national plague. The symptoms of these illnesses are remarkably similar to those of ME/CFS: unrelenting exhaustion, sore throats, joint pain, migraine headaches, cognitive impairment, post exertional malaise. Thousands of patients in our region are homebound and bedbound. And if that's not enough, for many, their symptoms do not improve for weeks, months, years, and decades.
The disrespect and misdiagnoses of these illnesses destroys lives, tears families apart, and costs billions of dollars in lost productivity. They are a severe, international, medical problem, made worse by their not being recognized by many who are supposed to provide care for them. The name alone has been debated for 40 years.
Our panelists will explore ME/CFS and Lyme Disease and we have only one hour for what requires weeks, months, years, and most likely generations to address.
Rik Carlson, Director ImmuneDysfunction.org
Rik will be the host and moderator.
The panelists will include:
Kenneth J. Friedman, Ph.D.
Dr. Friedman is a retired Associate Professor of Pharmacology and Physiology. He co-authored the Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome . He is trained to present the now defunct CDC's diagnosing and treatment course for CFS and has since written his own diagnosis and treatment course which was approved by the American Academy of Family Physicians. He was a member of the initial Chronic Fatigue Syndrome Advisory Committee, is an author of the ME/CFS Primer, is on the steering committee and authoring committee of the international Pediatric and Adolescent ME/CFS Primer. Dr. Friedman served on the planning committee, and was a presenter at the N.I.H. Chronic Fatigue Syndrome State of Knowledge Workshop. He served as Treasurer of the IACFS/ME, and currently serves as Treasurer of NJME/CFSA and on the Board of Directors of ImmuneDysfunction.org.
Dr. Friedman will discuss his recommendation to establish regional ME/CFS Centers of Excellence to be presented to the CFS Advisory Committee in Washington D.C.
David Maughan, Ph.D.
Dr. Maughan is a research professor emeritus at the University of Vermont and will explain Why patients with ME/CFS feel so fatigued.
Terry Naumann, M.D.
Dr. Naumann has the unique distinction of being a physician with direct personal knowledge of this disease. His insight is invaluable and he will address how to get the most out of your Doctor visit.
Senator David Zuckerman
Senator Zuckerman was 14 years in the Vermont House of Representatives and now 4 years in the Vermont Senate. Senator Zuckerman will share the experience of his wife who currently suffers from Lyme and other tick borne diseases after being infected about 14 years ago. He will also talk about his role as lead sponsor of a bill that would allow medical doctors in Vermont broader flexibility in treating Lyme disease.
Jeff Wulfman, M.D.
Dr. Wulfman will discuss Lyme disease placed into the perspective of related and overlapping illnesses.
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