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 video links and copies of all presentations and public testimony from the Nov. 8-9, 2011, meeting are now available on the website of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).

CFSAC is a federal Advisory Committee which provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to chronic fatigue syndrome (CFS), and a Designated Federal Officer is charged with assuring "coordination and communication between CFSAC and the HHS agencies," and acts as a "liaison for the Committee to HHS and various entities, i.e., other government agencies at the Federal, State, and local levels; the CFS biomedical, academic, and research communities; the public; and other non-governmental organizations."

The agenda for Day 1, Nov. 8 2011, included sessions on

  • International Classification of Diseases - Clinical Modification
  • Future Interdisciplinary Research for ME/CFS that Require a Variety of Scientific Disciplines

And on Day 2, Nov. 9 2011

  • International Classification of Functioning, Disability and Health: Application and Relevance to Chronic Fatigue Syndrome
  • CDC Report for CFSAC - CFS Activities Since May 2011
  • Minimum Data Elements for Research Reports on CFS
  • NIH Report for CFSAC

The CDC report on Day 2 includes the report of the group that reviewed the CDC CFS website and made recommendations. This is worth watching, as the website has been the subject of much discussion.

The CFSAC website home page has links to more information about the CFS Advisory Committee, including the Charter, By-Laws and Roster.  The Spotlight column contains links to important news.

The Recommendations page contains a link to a chart of recommendations made since September 2004, noting the date(s) of each and the action taken so far. This chart was last updated in July 2011.

This is an important site for those who are following public advocacy for ME/CFS and the activities of the CDC and NIH.

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.