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
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.
Wales to "partake in fun
socialization and friendly support." He describes the organization and its
inaugural gathering in "A Unique Approach."
scrapbook of John's trip to Mt.
Snowdon can be viewed at
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
Snowdon, John's passion for
enriching the lives of those sidelined by