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.

Soon to be published ME/CFS research project expected to provide valuable data

The Centers for Disease Control and Prevention (CDC) Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) held its second conference call for this year, on September 10, 2013. Elizabeth Unger, PhD, MD, Branch Chief, Chronic Viral Diseases Branch at the CDC served as host for this call that featured the world-renowned scientist, Dr. W. Ian Lipkin, who spoke about "Infection and Immunity in CFS." Dr. Lipkin is the John Snow Professor of Epidemiology Professor of Neurology and Pathology Director, Center for Infection and Immunity at Columbia University Medical Center, New York, NY. He has spent the past 30 years doing high-caliber research of many infectious agents, outbreaks, and emerging infectious diseases.

Dr. Lipkin has also worked on Chronic Fatigue Syndrome (CFS) research on several occasions. Several years ago, he was asked to lead the research project that re-examined XMRV/PMV in CFS (no infections were found in CFS); however, that study revealed many of the CFS patients had evidence of immune activation which captured Dr. Lipkin's interest. In this telephone broadcast, Dr. Lipkin provided a preview of some of the findings to come from a large research ME/CFS project, prior to its publication. This project was supported by the Chronic Fatigue Initiative (funded by the Hutchins Family Foundation). Although Dr. Lipkin prefaced his report with remarks that no single agent or cause was identified for CFS, he spoke about what he considers to be valuable data and where the focus of future research should go.

Phoenix Rising provides an excellent summary of the material presented by Dr. Lipkin in the following article, Lipkin finds biomarkers not bugs. Their article incorporates the transcript from this telephone broadcast; the link appears at the top of the article (i.e, this is highly recommended reading).

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.