The CFIDS Chronicle
Effective Leadership on a Name Change: An
The name change issue has taken center stage this
spring. Here's a look at what the Association has done recently-and over the
years-toward a name change. See "D.C. Dispatch" for details of the CFS
Coordinating Committee's name change action at its April meeting.
Just Call It M.E.? A Commentary
we rush to adopt M.E. as the new name for CFS, we need to take a hard look at how CFS and M.E. are defined.
By David Hoh
Spine, Skull Surgery May Help Many with
Researchers believe many cases of CFIDS and
fibromyalgia might be caused by pressure on the brain stem or spinal cord,
conditions that could be helped by surgery.
By David Hoh
Reports on the benefits of writing, treatment studies
for Gulf War veterans, and Association-funded research into orthostatic
intolerance and CFIDS.
Culture Clash: Experiencing CFIDS in
Cultural differences made her return from the U.S.
difficult. Now this CFIDS patient translates hope for others in Japan.
By Rika Kageyama
Teaching a Child with CFIDS to Set
The parent of two children with CFIDS talks about the
difficult task of helping children make choices about friends, school and
New Jersey advocates raise concerns about disability
study, British Working Group on CFS begins work, and more.
New Social Security
Ruling Should Help PWCs
The ruling should make it easier for CFIDS patients to
win disability benefits at an earlier stage in the appeals process.
By Vicki Walker
Disability Primer: A Lawyer Reviews What You Need
The disability process can be a legal maze. A lawyer
offers some key points to keep in mind.
By Meyer Silver, Esq.
All of us can help ensure the success of Lobby Day 1999
and support our volunteer lobbyists by writing to Congress.
By Marc Iverson
CFIDS Advocacy and Association
The latest from Capitol Hill and government agencies,
including an update on the ongoing CDC prevalence studies, the CFS
Coordinating Committee's progress toward a name change, the status of
Ampligen, and plans for a physician education program.
Inspector General Report Blasts CDC
The CDC diverted at least $8.8 million away from
CFIDS research since 1995 and misled Congress about spending.
Working Together: CFIDS Support
is the responsibility of a support group member as she gains some measure of healing and wants to move
By Leslie Pallone
Living With CFIDS
A Message of
struggling with the symptoms of CFIDS and depression all his life, a retired librarian finds the ability
to cope with CFIDS after treating his depression.
By Donald Prichard
another birthday with CFIDS, a PWC takes stock.
By Lisa Lorden
Automated CFIDS Wake-Up Service
tongue-in-cheek look at a government benefit you probably won't be receiving this year.
Tips, ideas and inspiration from one
PWC to another.
The new additions to the CFIDS book list include A
Parents' Guide to CFIDS, a practical handbook for parents by Dr. David Bell,
Mary Robinson and others, and Living with M.E., a fully updated and
comprehensive guide by Dr. Charles Shepherd, the medical advisor to the
National M.E. Association in England.
From the editor:
than 700 Chronicle
readers have returned the 1999 Reader Survey from the March/April 1999 issue. We had hoped to have partial
results in this issue, but late-breaking news from the Inspector General forced a change in plans.
Thank you so much for your enthusiastic response.
More surveys continue
to arrive, so itís not too late to send yours or request an electronic copy by E-mail (send a request
to email@example.com). We hope to have complete survey results in the next issue.David M. Hoh, Editor