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.

The Chronic Fatigue Initiative (CFI), a privately funded 501(c)3, has enlisted leading CFS/ME researchers to participate in a new collaboration. This is the first time the "venture funding" model, which uses private money to fund research on "overlooked" diseases and has been successful with cystic fibrosis and multiple myeloma, has been applied specifically to Chronic Fatigue Syndrome. According to Scott Carlson, Executive Director of the CFI, the Hutchins Family Foundation is providing "over $10 million" to fund projects through 2014, with the possibility of more depending on the findings.

The Chronic Fatigue Initiative has planned research projects in several areas, beginning with building a "bio-bank" containing biologic samples from a "well-characterized" cohort of 200 CFS patients and 200 healthy controls, collected by leading clinicians from around the country. Dr. Nancy Klimas is in charge of cohort recruitment. These samples can then be used for study by researchers around the country.

Creation of the bio-bank and a database to link information about the patients to the samples will be followed by research to discover and study possible pathogens involved in the illness.
An Epidemiology Project will utilize epidemiologic data from the Harvard School of Public Health to study possible environmental as well as biological risk factors for CFS.

A "Mechanism of Illness" program will work with a scientific advisory board of leading researchers and clinicians to formulate hypotheses and fund new grants for research to test these hypotheses.

Participating institutions include the Center for Infection and Immunity at Columbia University, Harvard School of Public Health, Stanford Medical School, Harvard Medical School, Duke University, NewYork-Presbyterian/Columbia University Medical Center, Brigham & Women's Hospital, Massachusetts General Hospital, University of Miami and University of Utah. Lead researchers include such familiar names as Drs. Nancy Klimas, Lucinda Bateman, Dan Peterson, Jose Montoya and Ian Lipkin.

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.