May 12, 2016
CCTV, Channel 17, 294 N. Winooski Ave. Burlington, VT 05408
7;00PM - 8:00PM

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.   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, 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.   Even the name of ME/CFS 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.

Kenneth J Friedman, Ph.D.

Dr.Friedman is a retired Associate Professor of Pharmacology and Physiology of the New Jersey. His interest in ME/CFS was to come to the aid ofhis daughter.  he co-authored the Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome .  He is a trained to present the now defunct CDC's diagnosing and treatment course for CFS, Dr. Friedman 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.

n 2004 he delivered a Research Subcommittee Report entitled, "Fish Or War," made the recommendation to establish Centers of Excellence for Chronic Fatigue Syndrome. The Designated Federal Officer of the CFSAC has constituted a Working Group to develop a recommendation to establish ME/CFS Centers of Excellence.  That proposal will be presented to the Advisory Committee next week on May 17 and May 18 .  Dr. Friedman, who led the writing of the justifications for Centers of Excellence in that recommendation,  will discuss the content and significance of that proposal and the role that patients can play in making such Centers a reality.

David Maughan, Ph.D.

Professor Emeritus of Molecular Physiology and Biophysics, University of Vermont College of Medicine.
Dr. Maughan will explain why patients with ME/CFS feel so fatigued.

Dr. Terry Naumann

Family Physician and Medical Director Addison County Community Health Services.
Dr. Naumann will address how to get the most out of your doctor's visit.

Jeff Wulfman MD, ABFM, ABIHM

Dr. Jeff Wulfman is a Family Physician practicing primary care in Bristol Vermont. He is Board Certified both in Family Medicine and Integrative Holistic Medicine. Dr. Wulfman spent over 10 years immersed in the intensive study and care of patients of all ages with Complex Chronic Illness (CCI) including ME/CFS, tick-borne diseases and ill-defined chronic inflammatory and degenerative conditions. He has lectured widely on these topics.

Dr. Wulfman will discuss the rapidly increasing incidence of Chronic Complex Illnesses (CCI) and some of the  common underlying factors including increased inflammation and microbial influences. He will also address how the rapidly evolving,  ill-defined and multifactorial nature of these conditions contributes to much of the confusion and discord associated with them.

Senator David Zuckerman

David Zuckerman is the founder of the Full Moon Farm, a NOFA-certified organic farm in Hineberg VT. He has served 14 years in the House of Representatives and 4 years in the Vermont Senate. He is currently a candidate for Lt. Governor.

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.

Rik Carlson

Host and Moderator.