to Vt CFIDS Assoc. Inc.

photo by Linda Johnson

CFIDS Legislation - January 2005

Without a doubt, the most common question we hear is "Do you know a good doctor?". In turn, the most common "complaint" we hear is "My doctor doesn't believe it to be real." Five years ago we introduced and passed legislation that provided funding to educate primary care physicians in Vermont about CFIDS. Unfortunately, at that time, The Vermont Department of Health could only go as far as the then current CDC definition which weighed heavily on CFIDS being a psychiatric disorder and encouraged all potential CFIDS patients to first have a complete psychiatric profile. No one questions that depression plays a role in this disease, but it is not the primary illness and there is no higher percentage of depression in people with CFIDS at the onset of the disease than there is the general population. Every time it is treated as the primary illness, the patient worsens. Every time. While we had the support of The Vermont Department of Health, they could only hang their hat on the then antiquated CDC definitions which did nothing to aid the estimated 2000 Vermonters bedridden and homebound with this disease. Times have changed. We have a new Vermont resident authorized to train primary care physicians by the CDC. We have direct access to a brilliant Primary Care Manual and we can make a difference.

Kenneth J. Friedman, PhD, Associate Professor of Pharmacology and Physiology, New Jersey Medical School, resides in Pawlet, Vermont and is trained by the CDC to educate primary care physicians about CFIDS. He co-authored,  A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome, published by The Academy of Medicine of New Jersey and the New Jersey Department of Health and Senior Services. The following is from the Foreword:
     "The stigma associated with having CFS and also for caring for patients with CFS defies explanation. So, we have attempted to destigmatize 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 thirteen 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."
Their goal is to,
"...bring to the primary care physician a manual that could facilitate and enhance the care of patients with CFS."

We have engaged the support of Vermont State Legislator Mark Larson to introduce a bill fashioned on the original bill of 5 years ago (which was passed and approved), to produce and send this manual to every primary care physician in Vermont. We also intend to make it available to patients and caregivers state-wide.

The longest journey begins with a single step.

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