with the Chronicle editor
I often communicate with chronic fatigue and immune dysfunction
syndrome (CFIDS) support groups online, and bad experiences with doctors seem to flood these billboards
and chat groups. I think the normal reaction is to complain and find support from others who have gone
through the same pain. I understand this, but it does little to actually solve the problem. The only thing
that will change the medical community and their reactions to persons with CFIDS is education. Knowledge
can empower the PWC. It is a tool that can not only help our doctors understand, but also aid us in being
active participants in our own treatment.
Sandra Lee F. Christman, Bellevue, Pa.
note: The CFIDS Association has introduced a newsletter on CFIDS to educate medical professionals.
See next letter.]
Praise for Review
The CFIDS Association of America's new medical
newsletter is thoughtful,
readable and concise. It will have a strong impact on many members of the health care profession, especially
primary health care providers, who are important to reach because they are often "all alone in the trenches"
and the first ones to interview patients. These practitioners should, in my opinion, find The CFS
Research Review educational and be motivated to learn more. This newsletter is one crucial step toward
Dan Kahn, MD, University of Iowa and the Iowa City Veterans Affairs Medical Center
Define the types
There needs to be a movement to define diagnostic criteria
for slow onset
and other "types" of CFIDS. Here are some of the stages I believe need to be addressed:
- Predrome, also called slow onset. When symptoms are first emerging. If we can define the
may be able to prevent collapse.
- Collapse. The point
where life activities are curtailed. This is significant due to the Social
Security Adminis-tration's requirement that a person be (or expect to be)
disabled for 12 months before qualifying for benefits.
- Recovery. Sometimes the
trend reverses and symptoms subside. We need to determine how patients can
best react when their "envelope" starts to expand.
- Plateau. Absence of
either deterioration or improvement.
- Remission. I think we
should call the absence of symptoms remission.
- Relapse and remission.
Do some patients truly relapse and remit? And if so, is this a special type,
or does it have to do with overexerting yourself when you think you your
illness has improved?
Progressive CFIDS. Some relapse and remit for years, then experience a severe
which they decline slowly, never reaching plateau.
In addition to recognition of these different forms, we should be developing diagnostic
protocols and epidemiological evidence regarding the significance of each.
Mary Schweitzer, Ph.D.,
More respect for cancer
I have had CFIDS and fibromyalgia for about 20 years,
and most of
those years I thought I was going crazy. Just recently I was diagnosed with a cancerous tumor in my breast.
The attention I got because of the cancer overwhelmed me. With cancer, people listened and I got respect,
something I never received as a result of having CFIDS. I am angry that so many suffer the pain and devastation
of CFIDS. Cancer has an end or cure. CFIDS just continues to take pieces of you until there is nothing
left, yet you keep living, like a zombie.
Edna K. Ramirez, Bronx, N.Y.