|Grassroots: Sample Letters for CFIDS Activists
Contact information for agency and congressional representatives
Sample Letter to Members of Congress:
As one of your voting constituents, I am writing to ask for your help to increase research funding for chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS). CFS affects more than a million American adults and teens, yet too few people understand its serious and long-lasting effects. It is characterized by severe exhaustion, disabling problems with memory and concentration, widespread muscle and joint pain and persistent flu-like symptoms. Research has documented defects in the brain and many body systems and new studies from CDC and other scientists abnormal gene activity in several key regulatory systems throughout the body, but we still don’t know what causes it or how to effectively treat it.
In FY06, the federal government spent about $14 million on CFS research and education. That’s not enough, given the large number of people who have it, the $9.1 billion annual cost to our economy and the severity of illness experienced by people during their most productive years. CDC has compared the level of disability caused by CFS to multiple sclerosis, end-stage renal failure and chronic obstructive pulmonary disease (COPD). There is no diagnostic test and treatment of the symptoms has limited effectiveness.
Please strengthen DHHS’s CFS research programs by supporting the CFIDS Association of America’s funding requests and recommendations for appropriations report language. You can view these recommendations http://www.cfids.org/advocacy/cfsac-recommendations.pdf, or get details from the CFIDS Association (704-365-2343) or the Sheridan Group (202-628-7770).
I hope the more than one million Americans affected by CFIDS can count on your leadership and support. We are eager to return to healthy and productive lives.
Sample Letter to Federal Agency Representatives:
I am writing to ask for your help in accelerating the federal response to chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). More than 800,000 American men, women and children of all races and socioeconomic classes have CFIDS. CFIDS is a terribly debilitating and serious illness, with symptoms including incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), muscle and joint pain, information processing and concentration problems, and numerous other symptoms. People with CFIDS 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 CFIDS, 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, effective treatment and a cure. In a 2001 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 CFIDS is not adequate and 87% indicated a need for more funding for CFIDS research.
Therefore I urge you to support programs, such as those advocated by The CFIDS Association of America, which will increase the amount and the quality of research on CFIDS by our national public health agencies, expand the knowledge of primary care providers on proper diagnosis and management of the illness, and improve the ability of patients to gain access to needed programs and services. For more information, please contact The CFIDS Association of America at telephone number 704-365-2343 or e-mail at firstname.lastname@example.org. Thank you for your consideration of these important matters.