"Veteran Advocate"

John Herd is no stranger to CFIDS advocacy. In fact, if "founding fathers" of the CFIDS movement were named, John would certainly be among them. He served for several years on the Board of The Mass. CFIDS Association and was editor of The CFIDS Update until 1994. John has attended almost every major CFIDS conference since the late 1980s and is on a first-name basis with most of the pioneers in CFIDS research and patient care. He is a frequent contributing author and cartoonist to many publications, including The CFIDS Chronicle, and he took top honors in a juried art contest for a 1994 calendar honoring artists with CFIDS. With fellow advocate Rebecca Edelson, John developed a proposal for a " CFIDS Summit" that positively impacted the movement even though the ambitious event was not able to be held. For the past three years John has been an active participant in the Name Change Working Group organized by the U.S. Department of Health and Human Services to explore re-naming CFS to something that more accurately reflects its seriousness and complexity.

John's most recent exploration was as a member of a relatively new on-line group called the Brainfog Association. In September, he and 60 others met at the base of Mt. Snowdon in Wales to "partake in fun socialization and friendly support."  He describes the organization and its inaugural gathering in "A Unique Approach." A photo scrapbook of John's trip to Mt. Snowdon can be viewed at http://www.cfids.org/about/bubbles.asp.

Since falling ill 15 years ago, John has lost a lot to CFIDS. But for all he has lost, he has found that giving back to others is his most effective coping strategy. Whether he's on the front lines of the name-change debate or blowing bubbles on top of Mt. Snowdon, John's passion for enriching the lives of those sidelined by CFIDS is obvious.