Support Network
Awareness Day Gains Attention for CFS

By Renee Brehio

International CFS/CFIDS/ME Awareness Day, recognized on May 12, is an opportunity for educating the world about this serious and debilitating illness. This year, many groups and individuals wrote their legislators, contacted the media and had Awareness Day proclamations issued by their state or city. Here are just some of the many other efforts by individuals and support groups to enhance public knowledge.

The CFS/FM Support Group of Dallas/Fort Worth hosted two speakers, Myra Preston, PhD and Jacob Teitelbaum, MD. Information displays were set up in 13 local libraries and several area hospitals. A letter to the editor about CFIDS and fibromyalgia was published in the Ft. Worth Star-Telegram.

Priscillia DeLeon of The CFS Association of the Lehigh Valley convinced the Pennsylvania edition of The Express-Times to cover CFIDS. The article describes her efforts to raise awareness. She also wrote a letter to the editor thanking Congressional representatives who have supported the illness.

The New Jersey CFS Association attended and exhibited at a physician’s conference in Atlantic City. They posted information about CFIDS on the bulletin board at the Atlantic City Medical Center, Mainland Division and put brochures and copies of The CFS Research Review in the physician’s lounge.

Leslie Pallone of The Central Florida CFIDS Support Group helped shape an article about CFIDS that ran in the Orlando Sentinel. The article included contact information for the Central Florida Support Group and The CFIDS Association of America.

The West Michigan Support Group convinced the local PBS radio station to air a segment on CFIDS. The group’s founder and their new president were interviewed about how the illness has affected their lives. The group also put posters up in libraries, drug stores and health food stores.

Kathy Houghton of the Alaska CFIDS Association worked with Blue Mountain Cards to create a CFIDS “awareness card” that could be e-mailed to friends and relatives around the world.

Faith Wong of the Utah CFIDS Association donated copies of Osler’s Web to the libraries of four major universities in Utah. She also helped to create the electronic “awareness card” mentioned above.

The CFS Association of Virginia (CFS-VA) and CFIDS & FMS of Southwest Virginia convinced a Barnes & Noble book store to feature CFIDS as a topic for an evening health awareness presentation and the groups sent out more than 200 flyers to medical professionals to alert them to the event. The groups also hosted their first fibromyalgia and chronic fatigue syndrome golf tournament.

The Greater Greensboro, N.C., CFIDS/ME, FMS, MCS Support Group held a seminar with Dr. Charles Lapp and passed out blue ribbons to wear in observance of the day.

The Gig Harbor, Wash., CFIDS and FM Support Group sponsored a booth at the local farmers market, where they handed out more than 100 information sheets.

The River Falls, Wisc., CFIDS/FM Support Group in Wisconsin held a concert with a well-known jazz band. The proceeds are being used to start a fund to help local uninsured and underinsured individuals. The group also set up displays at public libraries in four local communities.

The Message in a Bottle Project, organized by several CFIDS advocates, encouraged individuals with CFIDS or fibromyalgia to send empty prescription bottles along with a letter describing their experience to the American Medical Women’s Association.

Renée Brehio is the Director of Communications for The CFIDS Association of America.