Founder's Forum
A dialogue with Association members

November 5, 1999

Dear Members,

One facet of the The CFIDS Association of America's mission is to "stimulate high quality CFIDS research," and we take that charge very seriously. Many of our current and ongoing initiatives are dedicated to fulfilling this important cornerstone of our mission.

The CFIDS Chronicle. The Chronicle keeps you up-to-date on the latest CFIDS breakthroughs in both mainstream and alternative medicine. This issue alone provides a wealth of information about a wide range of research topics. We bring you news from a CFIDS conference in Belgium where more than 40 scientists presented their findings. A longer Research News section offers an update on advances in studying pediatric CFIDS. And an article on a new prevalence study shows how researchers are debunking some of the myths surrounding our illness.

The Chronicle also brings you insight on how individuals are coping with and treating their CFIDS symptoms---information that can make your own daily struggle easier. Turn to page 14 for a report on the use of B-12 injections to boost energy levels or page 22 for an interview with a neurosurgeon on whether surgery for Chiari malformation and cervical stenosis can help.

Medical newsletter. It is crucial that we bring knowledge of promising emerging science to physicians as well as patients. To this end, we are planning for a medical newsletter on CFIDS, which will make its debut early next year. The newsletter will be mailed to health care professionals to enhance the legitimacy of CFIDS as a serious medical condition and keep them informed of progress on research and treatment. Association members also will receive the newsletter in addition to the Chronicle.

Research workshops. Just publishing top- notch information about CFIDS isn't enough. We must recruit "fresh blood" to join the research effort, in the form of scientists who can contribute unique experience from related fields to the search for answers. Early next year the Association willsponsor the first in a series of scientifc workshops that will bring together CFIDS experts and well-respected researchers from other fields to explore promising leads and assess priorities. Our goal is to expand the number of investigators and to improve the number and quality of applications for federal research funds.

Aggressive advocacy. Another way the Association works to accelerate the pace of research is by advocating for it on Capitol Hill. We are fighting to ensure that CFIDS has a place on the national research agenda. If Congress does not mandate that CFIDS is a top health priority, funding for its study by federal agencies will drop dramatically.

Recently our efforts paid off when Congress directed the Centers for Disease Control and Prevention to return the entire $12.9 million that it misspent to the CFIDS research program. We continue to work to ensure that these restored funds-as well as any other CFIDS research funds-are used in ways that will help us solve the mysteries of this illness as soon as possible.
 
Like you, I look forward with hope to the discovery of biological markers for CFIDS, more effective treatments and ultimately a cure. CFIDS research is the pathway to wellness and the Association continues to work diligently to accelerate its pace. 

Sincerely,

Marc M. Iverson
Chairman & Founder