with the Chronicle editor
Not every symptom is
My late husband, Philip, battled with chronic fatigue and immune
dysfunction syndrome (CFIDS) for five years. But Philip didn’t die from CFIDS, he died from undiagnosed
diabetes. There is a danger in physicians not looking beyond the CFIDS diagnosis. Symptoms of other debilitating
diseases and conditions are often attributed to CFIDS. Be aware of the danger of undiagnosed illnesses
being attributed to CFIDS so that Philip’s death will not have been in vain.
Penny Stoller, Prescott,
Think before you spray
Our homes and public spaces must become fragrance-free.
are making many of us sick. I can no longer go to church, enjoy a concert or visit the doctor because
there is always someone overscented. But I am not alone. I have CFIDS, fibromyalgia (FM) and multiple
chemical sensitivities (MCS) and am a support group leader. What all MCS patients have in common is the
inability to handle fragrances. So be considerate of others; you may be forcing them into isolation.
Gately, Gig Harbor, Wash.
Kudos to Jennifer Spotila for her article in the summer Chronicle,
“Fatigue 101.” She did an excellent job of summarizing what most
PWCs have had to learn by trial and error—and still have to be reminded of from time to time.
to The CFIDS Chronicle for the smaller size. I can actually read it now. Also, thanks for the
Association’s efforts to educate medical professionals about CFIDS through The CFS Research Review.
My doctor knows more about FM than CFIDS, but she is willing to learn. The Review helps educate
Felicia Bell, Williamson, Ga.
Meditation for relief
Thank you for your recent article on
meditation. I am a PWC who has meditated for 22 years. It brings relief
from the pain of CFIDS. The loss of my career as a research chemist and my
inability to care for my family were the greatest losses caused by CFIDS.
Meditation allows those tears to flow. A great web site to help get you started
is (link no longer active),
where you can listen to a tape or CD using earphones.
Paula J. Nadon, St. Louis, Mo.
Struggling to work
I was diagnosed with CFS and FM about six years ago. I
applied for Social
Security benefits and received partial disability, but it was not a victory, and I have since had to return
The SSA requires so much paperwork that I had to hire an attorney, who took 25% of what
I got. But it gets worse. You then must continue to prove to the SSA that you’re disabled. They require
that you see a doctor, but most doctors won’t see you if you have no health insurance. And if you are
not working, you usually don’t have any.
I now have insurance because I returned to work ($225
a month wasn’t enough!), but every day is a struggle and my condition is worse. People shouldn’t be forced
to work when they are unable.
Anonymous, La Junta, Colo.
PWCs having children
I wasn’t able to read past the article on childbearing
in the summer
Chronicle because it made me so angry. My mother was ill all of her life. As a consequence of
her illness, I suffered all of my life. It might be nice to have a baby, but children don’t deserve to
bear the brunt of an unhealthy person. There shouldn’t be any question about an ill person having a child.
Raymond, Sun City, Calif.