From the Desk of K. Kimberly McCleary

CFIDS Association president and CEO K. Kimberly McCleary.

September 2006

To say the Internet has transformed daily communications would be a “so what?”  statement, particularly to those who read it in the Association’s electronic newsletter. So, while I’m preaching to the converted, I would like to draw attention to the real benefits online technology is bringing to people with very specific shared goals, like conquering chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS). Our cause is not unique in finding the Internet to be an essential supplement to other forms of communication with like-minded individuals, but the unique challenges imposed by CFS make the online community a vital means for breaking the isolation and powerlessness so common to the CFS experience.

Making things happen
This month we honor 30 advocates who have distinguished themselves by responding at least 50 times to Action Alerts sent through our Grassroots Action Center. Read their words about how participating in online advocacy efforts helps them cope with losses associated with CFS.

With the national awareness campaign underway, we’ve kept CFIDSLink subscribers updated with special reports as the campaign progresses. We also used the Grassroots Action Center to ask readers to thank key media professionals for covering CFS and the experiences of “celebrity” patients like Laura Hillenbrand and Michelle Akers, as well as not-so-famous folks like Joanne Brayden. Hundreds of you responded, making a significant positive impact on the reporters and media sources who’ve recently covered CFS. The Internet allows us to bring news of these opportunities to you quickly, yielding response options not possible through traditional communications channels alone.

Building a community
The cover story of the summer issue of the CFIDS Chronicle, written by Association board member Jennie Spotila, highlights CFS blogs. These personal websites have helped bridge patients across the globe and offer a means to share experiences often not possible when energy and concentration are in short supply. The blogs are available 24/7 and span a wide range of interests, styles and moods, improving the likelihood that you’ll find one that appeals to you, at whatever time of day or night you function best. If you strike out, the article includes advice on how to start your own blog. To request a free copy of the Chronicle, send a message to cfidslink@cfids.org with your postal address. You can also read about blogger Jo of Hidden Words at http://www.cfids.org/cfidslink/2006/blogger-jo.asp.  

Gathering information
The number of visitors to the Association’s website grows every month, as does the amount of information it houses. Last year we recorded more than 995,000 visitors to www.cfids.org’s 2,000 web pages. In addition to using the website as a means of serving the public and sharing news with the patient community, we view it as an archive of historical information and more detailed reports than can be provided in other publications. We recently completed an overhaul of the advocacy section of the site, removing outdated information and adding more current info in (hopefully!) more user-friendly formats. Please visit http://www.cfids.org/advocacy/default.asp, pop around the updated sections, and become a more informed advocate!

In the coming months we’ll be introducing some new online features to augment ways we use the Internet to sustain progress in the fight to conquer CFS. We look forward your participation and feedback as pioneers on the high-tech front of the CFS movement!

K. Kimberly McCleary
President & CEO