Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Editors note: On April 16, 2011, Dr. David S. Bell was the keynote speaker at the Massachusetts CFIDS/ME & FM Association’s (MassCFIDS) continuing-education lecture series. The event was co-sponsored by the Massachusetts Department of Public Health at the Hinton State Laboratory Institute Auditorium. Dr. Bell, a retired pediatrician from upstate New York with intense curiosity, set out to find answers as to what made his young patients so ill during the cluster outbreak in the late 1980’s. Along the way, he became one of the world’s leading researchers on ME/CFS and one of only a handful of physicians who have been able to closely follow his patient population for decades. Dr. Bell has authored many research articles as well as leading books on Chronic Fatigue Syndrome.

by Joan Livingston

You've said it thousands of times: "I'm just fine, thanks." Very likely you've said it a few times today without stopping to think to yourself, "The hell I am." Part of living with a chronic disorder, after all, is becoming accustomed to feeling unwell.

Just how unwell patients actually are is a complex issue, and was a primary focus of Dr. David Bell's April 2011 presentation to the Massachusetts CFIDS/ME & FM Association. (His lively talk was well-attended, drawing participants from beyond the state's borders.) A national pioneer in treatment as well as research, Dr. Bell shared the results of his most recent study, an investigation of the current status of people who were diagnosed with ME/CFS twenty-five long years ago.

The study was limited to one group of patients—those who fell ill as children in Bell's rural hometown of Lyndonville, NY—but its provocative findings, on many patients' "rising incapacity," may well have implications for other patients.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.