Founder's Forum
A dialogue with Association members

September 1, 1999

Dear Members,

We have had some changes at the Association in the last few months that we would like you to know about. Our Chronicle editor, David Hoh, has left the staff after more than two years of outstanding service to pursue a teaching career. Renee Brehio, a talented health care public relations professional with experience in raising awareness of unrecognized diseases, has come on board as Director of Communications. You can read more about both Dave and Renee in the "Association News" column in this issue.

Change is essential for more rapid progress. One change we need to focus on is bringing about greater public understanding and awareness of CFIDS as a legitimate medical condition. We have already gotten started down the right track by publicizing the CDC's blatant misconduct. In addition, our CPR Team is to be commended for responding to and correcting negative or misleading media coverage over the past year. But until knowledge of CFIDS becomes much more widespread, we can't let up.

Now more than ever, we need spokespeople.  This does not necessarily mean having to go on television or be quoted in print like soccer star Michelle Akers. CFIDS affects each one of us in some unique and some universal ways. That is why it is so important that we present the many "faces" of  CFIDS-the wide-ranging manner in which it can impact, and ultimately destroy, lives.

All of us have an active role to play in bringing our stories to light. You have only to look at the "Living with CFIDS" section in this issue to see examples of individuals who are educating their families, friends and themselves. Through the Chronicle, they are also providing hope to others with the illness.

Here are a few simple things that you can do to become a spokesperson for CFIDS:

• Spread the word locally by talking to community groups. Visit schools, church meetings, rotary clubs and/or other chronic illness support groups. Health fairs are also good places to drop off information or make contacts.
• Ask for a meeting with your local newspaper's editorial board, or start by writing a letter to the editor (for publication) about a specific aspect of living with CFIDS.
• Talk to ALL your physicians about your condition, even those who are not directly treating you for CFIDS. Most physicians are sorely uneducated about the illness, and you can be a part of the process.
• Volunteer with the Association or your local support group. We need individuals who can participate in C-ACT, our advocacy team, or our CPR Team. Call 800/442-3437 to get involved.

I cannot promise that these suggestions will be easy to implement. Your efforts may initially be met with resistance from the audiences you are trying to reach, and there are obviously serious limits in terms of the amount of activity our health can tolerate. But despite the barriers, it is absolutely crucial to send the message in any possible way that CFIDS is real, is    devastating and is still an unsolved mystery.

Let's show our faces. We must be recognized to get the response we need and deserve.

Sincerely,

How else can you help? Inform us of media coverage and educational activities in your community. E-mail to media@cfids.org, or mail clippings to Renée Brehio.