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.
- Last Updated: 13 January 2016 13 January 2016
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is an official advisory committee, within the Department of Health and Human Services (DHHS), which has been meeting twice a year to review multiple issues related to ME/CFS (i.e., research updates, educational issues, healthcare, diagnosis, treatment, progress and setbacks) and make recommendations accordingly.
Highlights of the CFSAC meeting held on June 13-14, 2012 are provided below, as links to Occupy CFS. Occupy CFS was created by Jennie Spotila who describes it as "a blog about living with CFS, including the politics, research, medicine, and personal experiences." Permission was granted by J. Spotila to link to articles/posts at Occupy CFS.
CFSAC Takeaways[Occupy CFS] Jennie Spotila, creator and moderator of Occupy CFS, summarizes the main points from the June 2012 Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting.
CFSAC Comments from Dr. Lily Chu [Occupy CFS] Written comments submitted by Dr. Lily Chu to the Chronic Fatigue Syndrome Advisory Committee (CFSAC), June 2012 meeting.
CFSAC Profile: Dr. Adrian Casillas [Occupy CFS] The first in the series of four profiles of the new Chronic Fatigue Syndrome Advisory Committee (CFSAC) members written by Jennie Spotila.
CFSAC Profile: Dr. Lisa Corbin [Occupy CFS] The second profile out of four of the new Chronic Fatigue Syndrome Advisory Committee (CFSAC) members written by Jennie Spotila.
A presentation on children/youth, Pediatric CFS: Gains and Gaps (Research 1st - official blog of the CFIDS Association of America) made by Dr. Peter Rowe, Professor of Pediatrics at Johns Hopkins Children's Center, to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting held on June 13, 2012.
VIDEOCAST - Chronic Fatigue Syndrome Advisory Committee (CFSAC) for June 13-14, 2012 meeting (U.S. Depart of Health and Human Services Office on Women's Health) is now available as a series of YouTube videos at the Office on Women's Health site. Videos 1 -8 record Day 1 of the meeting, in segments of about 60-90 minutes and videos 9 - 14 cover Day 2. NOTICE - the Fall 2012 CFSAC meeting is scheduled for October 3-4, 2012 at the Hubert Humphrey Building, Room 800, 200 Independence Ave., Washington, D.C.
Spring 2012 Meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC): The videocast and Minutes for the June 13 and 14, 2012 CFSAC meetings are available at the CFSAC website (http://www.hhs.gov/advcomcfs/meetings/index.html).
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.