Survey Results: New Features Coming to the
By Mark Giuliucci
Thanks to the hundreds of people who
filled out the Reader Survey
appeared in the spring issue of the Chronicle. I have read each one, and
appreciate the time and effort you’ve taken to share your opinions.
Now it’s time to act on
your ideas. We’ve decided to make a number of changes to the Chronicle in
response to the survey. It’s my sincere hope that these changes will make the
Chronicle even more informative, responsive and relevant to our members and
others in the CFIDS community.
More than half of the surveys
more stories about people with CFIDS (PWCs). Starting with this issue, we will
devote a four-page pullout in the center of the Chronicle to profiles of PWCs, plus artwork, writings
and tips from the people in our community. Snapshots sections will run in every
other issue, using four additional pages.
Many readers are frustrated
conventional medical treatments and are seeking other ways to relieve their
symptoms. But alternative and complementary therapies can be controversial — and
sometimes dangerous. Starting immediately, the Chronicle will focus on one therapy per issue, including
the possible benefits, drawbacks, risks and research behind it. See p.21 for a
story on bodywork treatments and CFIDS.
The Chronicle has always
presented the most accurate, up-to-date coverage of
CFIDS research issues possible. Readers have suggested a few changes to make our
Research News section even better. Starting with this issue, we will include a
CFIDS glossary that explains key research terms in everyday
In addition, we will
feature periodic updates on trials of CFIDS-related drugs. Though these trials
can last years, readers tell us how important it is to know exactly where the
drug tests stand and when to expect results.
Readers Forum page has always been
available to members who want to express their opinions. Starting with this
issue, we are going to offer discussion topics in hopes of creating focused
discussions on issues important to the CFIDS community.
Q & A format
Earlier this year, the Chronicle
running question-and-answer interviews with prominent CFIDS doctors and
researchers. Readers have responded to these stories very positively. So we’re
going to make the Q & A sessions a regular part of the Chronicle. We are lining up a series
interview subjects; if you have any suggestions, please let me know.
Acquiring and keeping disability
is a key concern to many PWCs. The Chronicle has featured numerous stories about Social Security
Insurance (SSDI), long term disability (LTD) insurance and other issues. Many
readers suggested creating a regular column that addresses disability questions.
In response, we have
created a pool of disability experts who will offer advice on winning, and
holding on to, benefits. If you have a question, please send it to the address
below. We regret that we cannot answer every letter, and the Association cannot
recommend individual attorneys.
I hope that you will enjoy the changes
to the Chronicle. As
invite your comments, suggestions, criticism and thoughts. It’s my goal to make
each issue better than the one before. I hope you’ll agree that we’re heading in
the right direction.
Send your thoughts to: The CFIDS Association
of America, P.O. Box
Charlotte, NC 28222-0398, Attention: Chronicle editor.
Mark Giuliucci is editor for The CFIDS Association of