CFS Patient Advocates “Turned the Tides of Modern Medicine” in Vermont. Their Tool: A Physician Manual for CFS Patients’ Care
“Turning the Tides of Modern Medicine is No Small Task,” reads a banner headline at the Vermont CFIDS Association site. They’re referring to the Association’s successful campaign to get a bill passed by the Vermont State Legislature appropriating funds to support physician instruction “on the range of therapies across medical disciplines that can improve the lives of CFIDS patients.”
In mid-2006, Vermont appropriated funding for the printing, promotion, and distribution of an 81-page Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome to every primary care physician in the state. The goal being to “bring to the primary care physician a manual that could facilitate and enhance the care of patients with CFS."
More recently, on October 23, 2006, the Vermont Department of Health officially launched an educational Web page devoted to dissemination of this manual and other information about Chronic Fatigue Syndrome – at http://healthvermont.gov/prevent/chronic_fatigue/index.aspx
Patients can also read about and download the Consensus Manual at the Vermont CFIDS Association site - http://www.monkeyswithwings.com/vtcfids.html.
A new feeling
"I'm so used to fighting that it's a new feeling to be so pleased," commented Vermont CFIDS Association President Rik Carlson. “It’s a good beginning.” The Department of Health will promote the manual in a series of other venues in addition to the Web site, he notes.
“We also intend to make it available to patients and caregivers statewide,” he adds. “Because of the repeated misdiagnoses, educating primary care physicians is imperative, and this manual will give us/them a comprehensive starting point. Furthermore, patients will be able to bring this manual to their caregiver - and by focusing on the chapters that are relevant to their condition, experience a degree of empowerment which has been previously unimaginable. That has happened in New Jersey.”
About the Consensus Manual
Vermont is really following New Jersey’s lead. The Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome was developed in 2002 for the education of healthcare providers in that state. The New Jersey State Legislature passed a bill to fund its creation, and it is copyrighted by the Academy of Medicine of New Jersey and the New Jersey Department of Health and Senior Services.
As the Consensus Manual’s creators wrote in its introduction: "The stigma associated with having CFS and also for caring for patients with CFS defies explanation. So we have attempted to de-stigmatize the primary care of patients with CFS, and to outline the ranges of therapies across medical disciplines that can improve the lives of these patients. These 13 chapters are intended so that the primary care physician, and specialist alike, can appreciate the pathophysiology, differential diagnosis, and therapeutic opportunities in patients with CFS. The extensive bibliography will allow the interested caregiver to delve deeply into one of the most fascinating and complex maladies of modern medicine."
And a physician-trainer in residence
Another resource for Vermont is a co-editor of the Consensus Manual. New state resident Kenneth J. Friedman, PhD, Associate Professor of Pharmacology and Physiology at the New Jersey Medical School, has been trained by the CDC to educate primary care physicians about CFIDS, Mr. Carlson explains. The other editor of the Manual is Joseph F. John, Jr. MD, a Professor of Medicine at the UMDNJ-Robert Wood Johnson Medical School. More than 20 other eminent professionals worked on the writing committee and served as consulting advisors.