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.

by Charles Lapp, M.D.

January 12-14, 2007

The 2007 meeting of the IACFS (formerly AACFS) has set new records for attendance, including more than 250 professionals and over 300 patients. An effort has been made to expand internationally, and over 21 countries were represented at this meeting!

Even before the meeting began, big changes were occurring. The IACFS Board voted to change the name of the organization to the International Association of CFS and ME in recognition of the term—ME—used by many other English-speaking nations, and thereby tendering an alternate name for this illness. Later in the week, an ad hoc Name Change Committee, put together by ProHealth CEO Rich Carson, also recommended using the term ME (or Mylagic Encephalopathy) in lieu of CFS. CFS will probably remain the scientific term for the illness, but it is hoped that ME will become the common designation.

Another key event at this meeting was the introduction of the new Pediatric Case Definition. A working committee of the IACFS has hammered out a proposed manner of diagnosing children and adolescents with this disorder. Research has been hampered in the past by the absence of unifying diagnostic criteria. The committee has provided a summary paper, a questionnaire for clinical use, and a summary "scoring sheet," which should help both clinicians and researchers to understand pediatric CFS/ME better.

In reviewing the papers submitted for presentation, it soon became clear that the amount and quality of research in CFS/ME has increased significantly over the past two years, and that many researchers are looking into specific aspects of the illness (such as fatigue, or pain, or sleep disruption) rather than attempting to study the syndrome as a whole.

It seems that each year a new aspect of research is introduced, and this year that aspect is "genomics and proteomics." Genomics is defined as the study of function and interactions of genetic material in the genome, while proteomics is the study of proteins made in the cell. Both of these fields are contributing substantially to our understanding of CFS/ME and FM. As Dr. Suzanne Vernon of the CDC pointed out, it is hopeful that these studies will lead to a better understanding of the illness, perhaps a specific marker, and possibly even therapy.

Unlike previous conferences, clinical and research papers were inter-mingled this year but organized by general topic such as fatigue, sleep disorders, clinical trials, pain, epidemiology, brain function, behavioral health, pediatrics, gender aspects, and genetics/proteomics.

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.