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In this Issue

• From the Desk of Kim McCleary
• CFIDS Research Grant Awards
• CFIDS: A $9.1 billion per year drain on US Economy
• Federal advisory committee on CFS holds fourth meeting
• Modafinil treatment shows promise
• Shopping for Good
• How does CFIDS impact family members of a PWC?
• CFIDSLink Out & About
• CFIDSLink Bulletin Board

From the Desk of Kim McCleary
Visit http://www.cfids.org/cfidslink/july-desk-kim.asp to read a message from Association President & CEO, Kim McCleary, about the value of officially designating CFIDS a “serious public health concern.”

CFIDS Research Grant Awards
The CFIDS Association is the nation’s largest nonprofit funder of CFIDS research. We are pleased to announce the four studies that have been approved for funding beginning in July 2004. Visit http://www.cfids.org/cfidslink/research.asp to learn more.

CFIDS: A $9.1 billion per year drain on U.S. Economy
On June 21, 2004, the U.S. Centers for Disease Control & Prevention published a landmark study estimating the economic loss due to CFIDS to be at least $9.1 billion per year and comparing the economic impact of CFIDS to those of digestive system disorders and infectious and parasitic diseases.The $9.1 billion figure does not include health care costs or payment of disability benefits, which are likely to be substantial. This study helps illustrate the seriousness and magnitude of CFIDS as a public health concern. It can be used to help raise awareness and to justify increased federal investment in CFIDS research. For more about the study visit http://www.cfids.org/advocacy/2004/c-act_06232004.asp; use the Association’s Grassroots Action Center at http://capwiz.com/cfids/issues/alert/?alertid=6027176 to share this information with the media and/or thank CDC director Dr. Julie Gerberding for this important data.

Federal advisory committee on CFS holds fourth meeting
The committee that will make recommendations to the U.S. Secretary for Health on actions to improve the government’s response to CFIDS met on June 21. Association Board members and staff participated in the day-long session that focused on research, education and patient testimony.  Visit http://www.cfids.org/advocacy/2004/c-act_06222004.asp for our report on the meeting.

Modafinil treatment shows promise
This drug has shown benefit in treating narcolepsy, sleep apnea and sleep abnormalities related to shift work. A small trial in FM patients points to its potential benefit, building on anecdotal reports from CFIDS and FM patients who have found it to be helpful. Read more about this drug at http://www.cfids.org/cfidslink/Modafinil.asp

Shopping for Good
Remember the phrase, “A penny saved is a penny earned”? Since we discovered iGive.com and Amazon.com that phrase has new meaning to the CFIDS Association of America. And it will to you, too. Learn more about how to shop and give at http://www.cfids.org/cfidslink/shopandgive.asp

How does CFIDS impact family members of a PWC?
When you become ill with CFIDS , it can dramatically change the lives of those around you. The CFIDS Association of America is gathering stories on the larger impact of this devastating disease. We'd like to hear from you and those people in your life who are also living with your illness. This includes spouses, children and siblings whose lives have been seriously affected by your illness. We believe these stories can help the general public understand the full extent of the toll CFIDS takes not just on CFIDS sufferers, but on everyone who cares about them.

Please send your stories to Marcia Harmon at stories@cfids.org.

CFIDSLink Out & About
Visit http://www.cfids.org/cfidslink/july-out-n-about.asp for up-to-date news and happenings within the CFIDS community.

CFIDSLink Bulletin Board
Visit http://www.cfids.org/community/bulletin-board.asp for notices from individuals and organizations about resources and services available for PWCs, as well as requests for information and assistance.