As a four-year member of the Chronic Fatigue Syndrome Advisory Committee, a federal committee which advised the US Department of Health and Human Services regarding Chronic Fatigue Syndrome, I have been following the dismantling of this advisory committee. With no prior notice to either committee members or the public, the Department of Health and Human Services allowed the charter of the CFS Advisory Committee to expire. This occurred in September 2018, and there has been little, if any progress in re-starting the committee.
This is particularly troublesome to me, as someone who represents many individuals who suffer from CFS and ME (Myalgic Encephalomyelitis) and who face ongoing battles with their disability insurance company seeking not to pay benefits.
The CFSAC was the only federal entity focusing on these diseases. It drew on other federal agencies also, including the National Institute of Health (NIH), CDC (Centers for Disease Control and Prevention), the VA (Veteran’s Administration), among others.
It should be noted that the CFSAC was the only discretionary committee that this administration chose to eliminate.
In an effort to illuminate the general public about how devastating these diseases are (and perhaps to prod Congress a little), I’d like to share with you an article written by Dr. Kenneth J. Friedman, retired Associate Professor of Pharmacology and Physiology of the New Jersey Medical School in Newark, NJ. Dr. Friedman developed an interest in Chronic Fatigue Syndrome (CFS and now also known as CFS/ME or ME/CFS) when his daughter became ill with CFS/Fibromyalgia in the early 1990’s. He is the author of the lead chapter of the New Jersey Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome, and co-author of two additional, clinical chapters in that monograph.
He recently authored an article that appeared in Frontiers in Pediatrics, an international peer review medical journal, titled Advances in ME/CFS: Past, Present and Future. In it, he explains how the nature of ME/CFS has been overlooked and the disease has been stigmatized by being mislabeled as a psychosomatic illness. Because of this incorrect characterization, there has been insufficient research exploration and little to no patient care.
Dr. Friedman’s article presents a detailed look in the history that has led to the current status of this disease, including the impact of public policy, politics and federal funding. This global disease, which clinicians say is more devastating than HIV/AIDS, affects as many as 2.5 million Americans.
His comparison of the two diseases is reasonable. But an AIDS diagnosis today is not the same as it was thirty years ago. A diagnosis of ME/CFS has not changed appreciably.
We encourage anyone interested in this illness to read Dr. Friedman’s article. It is an eye-opener for anyone who is not familiar with the background of the disease and its impact on so many Americans.