- Last Updated: 23 January 2016 23 January 2016
In this day age of electronic communication, emails tend to get lost among the masses. If you have the strength, it is better to write a letter and mail it.
As one of your voting constituents, I ask that you support increased research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(ME/CFS) also known as the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Over 2,000,000 American men, women, and children of all races and socioeconomic classes have ME/CFS. ME/CFS is a terribly debilitating and serious illness, with symptoms including incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), muscle and joint pain, cognitive difficulties such as information processing and concentration problems, and numerous other symptoms. Persons with ME/CFS if not totally disabled, function at a substantially lower level of activity than they were capable of before becoming ill.
Although there have been many advances in the understanding of ME/CFS, it remains a complex and difficult disease to diagnose and treat. Improved understanding is severely hampered by inadequate funding for the critical research needed to better define its impact and identify more effective treatments to ultimately find the cause, treatment and a cure. In a recent survey fielded to more than 8,100 medical professionals and researchers from a variety of disciplines, 77% felt that the amount of professional education about ME/CFS is not adequate and 87% indicated a need for more funding for ME/CFS research.
Therefore, I urge you to support legislation which will increase the amount and quality of research on ME/CFS by our national public health agencies. For more information, please contact the Massachusetts CFIDS/ME & FM Association at 617-471-5559 or visit their website at www.masscfids.org. Please help us increase awareness of ME/CFS by recognizing May 12 as International ME/CFS Awareness Day. Thank you for your consideration of these important matters.
Notice about names
The Massachusetts ME/CFS & 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) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.