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Correspondence with the Chronicle editor
Federal info out of
Our state CFIDS organization has developed a good working
relationship with the Connecticut Department of Public Health. The department
has offered to mail information about CFIDS to health care providers in our
state; however, they only want to use publications issued by the Centers for
Disease Control and Prevention (CDC) or National Institutes of Health (NIH).
Nothing up to date is available! The NIH's booklet for physicians is out of
print and the CDC's booklet has not been updated since May 1999. On-line
information from them is not really appropriate for a formal mailing.
It's frustrating to build an
important working relationship like this one, only to be hindered by federal
agencies that don't maintain current publications (even on the Web). We need
these tools - both as patients and as advocates for our cause.
Michelle Lapuk, co-president, Connecticut
Opening eyes to vision
Thanks so very much for the recent article in The CFS Research
Review regarding visual symptoms and CFIDS ("Visual Dysfunction in Chronic
Fatigue Syndrome," Summer 2001). This was a first for me, to read about
something that is common to PWCs, including myself. The Review and the
Chronicle, too, are at the forefront of information on CFIDS. You are to be
Jan Meissner, Las
What's in a
There has been much discussion about changing the name "chronic
fatigue syndrome." The current name means nothing to much of the medical world,
since it does not convey the devastation that the illness causes individuals and
Still, I have mixed emotions
about changing the name. The proper name would tell people with the disease what
lies ahead. It would tell them that each day they will wonder whether they'll be
able to get out of bed, whether their digestive systems will work and whether
they'll face incredible headaches, muscle spasms and body pain. They'll know
that they may have brain fog, or a flare-up of allergies, or that they may be so
dizzy that they pass out.
The proper name for chronic
fatigue syndrome might horrify the individual and their loved ones. While this
may not be good, for the medical world and the general population it is
necessary. The illness will finally be taken seriously and be truly understood
for the devastation it causes. Maybe then the government will provide the funds
necessary to find treatments to cure this poorly named illness.
Anne McFerron, Severn, Md.
The most recent Chronicle issue made me realize even more the
wide range of disability that CFIDS imposes on each individual. While some
people are able to participate in activities, others are barely able to
function. Personally, I have gone from working 60-70 hours per week to being
completely bedfast for long periods of time.
This disease is different for
everyone. Just because one PWC is able to function at a higher level than
another does nothing to minimize the first person's symptoms or disease. Thank
you for helping all of us. With each and every issue, I believe the information
in the Chronicle improves the lives of all PWCs.
Jamie, Calhoun, Ky.
The CFIDS Chronicle welcomes letters from readers.
Please address correspondence to: The CFIDS Association of America, P. O. Box 220398, Charlotte,
NC 28222-0398, Attention: Mark Giuliucci, Editor. Letters also may be sent to firstname.lastname@example.org.