CFIDSLink is e-mailed monthly free of charge to all those interested. To sign up for the electronic newsletter visit http://www.cfids.org/subscribe.asp 
 

In this Issue

• From the Desk of Kim McCleary
• CFIDS Association’s WebMD Project Puts Spotlight on CFIDS
• Office of Research on Women’s Health Updates Website
• Take action against pain
• Living with CFIDS: Personal Stories
• Coverage of Questionnaire Results Concludes

From the Desk of Kim McCleary
The National Institutes of Health (NIH) posts estimates of funding for disease-specific research on its website. Of the 110 conditions listed, CFIDS & FM are 2 of 12 “no funding growth conditions”. Visit http://www.cfids.org/cfidslink/2005/feb-ftdo.asp to read a message from Association President & CEO, Kim McCleary, about this report and how you can help advocate for growth in NIH support for CFIDS.

CFIDS Association’s WebMD Project Puts Spotlight on CFIDS
Since January 10, a series of four compelling CFIDS “advertisements” have encouraged over 3,500 WebMD visitors to learn more about CFIDS through a health assessment tool on the Association’s website. http://www.cfids.org/cfidslink/2005/web-md.asp

Office of Research on Women’s Health Updates Website
The National Institutes of Health (NIH) Office of Research on Women’s Health (ORWH) has added two new features to its chronic fatigue syndrome (CFS) webpage, http://www4.od.nih.gov/orwh/cfs-newhome.html. A “Program Announcements” section gives specific information on active CFS grants issued by ORWH. The new “Search of PubMed CFS Literature” feature located under “Information for Researchers” provides access to citations and abstracts for biomedical articles from MEDLINE and additional life science journals. More than 4,800 articles over the last 10 years have CFS as a major or minor focus. PubMed is a service of the National Library of Medicine.

Take action against pain
The National Pain Care Policy Act (H.R. 1863) is the most comprehensive pain care bill ever introduced in Congress. To learn more and to express your concern about the appropriate care for those with chronic pain, visit http://www.cfids.org/cfidslink/2005/chronic-pain.asp.

Living with CFIDS: Personal Stories
Many CFIDSLink readers have been sharing their own stories of how CFIDS impacts their lives. Spouses, friends and children of PWCs (people with CFIDS) are taking the time to write us and tell us about their journey, their joys and sorrows, the changes in their lives. In this month’s column, we are publishing the stories of PWCs Teri Van Horn and Becca Brasfield. Teri shares the powerful story of how CFIDS severely strained her family relationships and threatened to end her new marriage. Visit http://www.cfids.org/cfidslink/2005/van-horn.asp to read her account of life with this “all-consuming” illness. Becca shares with us her “before and after” picture of living with CFIDS. To read how Becca’s life changed with the seeming flick of a switch, visit http://www.cfids.org/cfidslink/2005/brasfield.asp. Send your personal stories to Angenette Rice-Figueroa at stories@cfids.org.      

Coverage of September Questionnaire Results Concludes
In response to a September 2004 questionnaire, foreign subscribers to CFIDSLink shared their experiences with ME or CFIDS. Respondents offered their perceptions about how they are viewed by health care providers, their families and the general public; how disability and Social Security benefits are administered; and what the illness is called in their country. To read more visit http://www.cfids.org/cfidslink/2005/questionnaire-results.asp.