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 Syndrome Advisory Committee (CFSAC), representing a number of major federal health agencies, provided study updates and new recommendations at a one-day meeting on May 10, 2010.  This was also an opportunity to become acquainted with Dr. Elizabeth Unger, the new Acting Chief of the Chronic Viral Diseases Branch (CVDB), at the CDC.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) held a one-day meeting on Monday, May 10, 2010. This committee meets to review and respond to updates provided by the major federal health agencies such as the Social Security Administration (SSA), National Institutes of Health (NIH), Food and Drug Administration (FDA), and Centers for Disease Control & Prevention (CDC), as these pertain to CFS/CFIDS/ME. 

This particular meeting provided an opportunity to become acquainted with Dr. Elizabeth Unger, Acting Chief of the Chronic Viral Diseases Branch (CVDB), at the CDC. It was on February 14, 2010, when Dr. Unger was selected to replace Dr. William Reeves who had held this position since 1991. Dr. Unger kept her initial presentation to the CFSAC very brief. First, she reported that ME/CFS and Human Papilloma Virus (HPV) research will be moving to a new laboratory (i.e., Building 23) during mid-June of this year. Then Dr. Unger touched on a few upcoming publications by the CDC, as follows: one study addresses the need to evaluate and treat metabolic syndrome in ME/CFS; another study will use survey data to create standards by which to assess educational efforts; and yet another one will measure domains of ME/CFS by way of a multidimensional fatigue inventory (MFI) instrument. She offered a few comments about the Five-Year Strategic Plan and responded to committee questions on where the CDC is now on certain issues (e.g., communication, empirical definition, pilot registry).

The highlight of this meeting (at least from the patients’ perspectives) would be the data presented on XMRV and blood supply by Jerry Holmberg, PhD, Senior Advisor for Blood Policy, Blood Safety and Availability, Office of Public Health and Science (OPHS). Dr. Holmberg emphasized what is being done and what the future plans are regarding XMRV detection, prevalence, risk assessment and risk management. He reviewed what the American Association of Blood Banks (AABB) XMRV Task Force has been doing and how experts inside and outside of government have been working together and maintaining contact, sometimes daily, but confirmed there were lengthy teleconferences every couple of weeks. This topic spans multiple pages in the PDF copy, including extensive committee discussion that ensued.

Therefore, the Massachusetts CFIDS/ME & FM Association strongly recommends that everyone takes advantage of this material, primarily because it comes directly from the individuals involved and secondly, there are many new developments surrounding ME/CFS. This videocast is free, easy to use, target or replay desired segments, plus it includes closed captioning. The minutes of this meeting are available as a PDF which allows us to print it off or save this document—be aware, the hardcopy will be 40 pages long.

All of this valuable information is readily available and just a few clicks away. The HHS Office on Women's Health (OWH) was the department responsible for the recording of the meeting which is now a permanent part of the NIH VideoCast library. View the video. The length of this session is 05:47:57.  Minutes of this meeting are also provided as a PDF.

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.