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Patients: Newly Diagnosed
We're Here and We Understand
If the experience
of the
majority of persons with chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic
fatigue syndrome (CFS), is true for you, the diagnosis of your illness comes as both a relief and an added
stressor in dealing with your health. The months of declining health and function, puzzling and changing
symptoms and uncertainty about future abilities have almost certainly been nightmarish.
The diagnosis of CFIDS/CFS may relieve fears that you were
going crazy, becoming a hypochondriac or even dying. Now that you have a diagnosis, it is hoped that you
can
regain feelings of control and empowerment by becoming informed about CFIDS and partnering with your health
care provider to determine a course for treatment and illness management.
Sorting through the vast literature about CFIDS can itself be a
challenge. On this website we have strived to answer your most frequently asked questions and provide
information that will help you become informed, without being too overwhelmed.
You may find that this diagnosis carries with
it stigma and skepticism from some people - usually those who have little or no accurate facts. This can
be
a particularly challenging part of coping with the illness. By sharing correct information, you may feel
empowered and better able to cope with the changes CFIDS brings.
Some Basic
Facts About CFIDS
CFIDS is a serious and complex illness that affects many
different body systems. No cause or cure has been found yet. Treatment is aimed
at improving symptoms that are present. With good medical care, improvement in
symptoms, functioning and quality of life are possible. A more thorough
description of the illness is available in our publication titled, "
Introducing
CFIDS
."
The
scientific community continues to actively research CFIDS. Several theories,
such as CFIDS being caused by the Epstein-Barr virus (the virus that causes
mononucleosis), have been proposed in the past but have been disproven, Theories
currently being
explored focus upon central nervous system defects, neuroendocrine abnormalities, immune system dysfunction
and infectious
agents. Researchers are also investigating possible treatments, prevalence rates, prognosis and the role
of stress in illness onset and perpetuation of symptoms.
It is
estimated that over 800,000 people in the United States have CFIDS. Women are affected more
than men; African Americans and
Hispanics more than whites; and adults more than children. Of note is the fact
that CFIDS is a global illness - it is not confined to the
U.S. and research is occurring in several other countries.
The Centers
for Disease Control and Prevention (CDC) facilitated the revision of the case
definition for CFIDS in 1994 to establish symptom guidelines that identify the
illness, which include disabling fatigue for at least six months and four of
eight other specific symptoms. This case definition was developed to guide
research on CFIDS, but it is generally used by health care providers to help
make the diagnosis. However, health care providers may not be
as strict in their use
of the guidelines as researchers. For instance, if a patient has three of the
eight symptoms from the case definition and several more that are common to
CFIDS, the provider will likely make a CFIDS diagnosis.
Symptoms of
CFIDS are highly variable and
fluctuate in severity. In addition
to the eight primary symptoms listed by the CDC, examples of other common symptoms
are visual disturbances, chills and night sweats, shortness of breath, dizziness and balance
problems, gastrointestinal problems, chest pain, allergies or skin rashes.
By
increasing your knowledge of CFIDS, you can be an active participant in your medical
care. Candid discussions with your
health care provider are necessary to ensure satisfactory management of the illness. You may
wish to communicate your knowledge about CFIDS with your provider and offer to
share educational resources that could be helpful for them.
Living with a
chronic disease is not easy for anyone involved - the person who is ill, as well
as family and friends. Information and support is available and there are probably
others in your community who
can help. Becoming an Association member and visiting the Association's Web site frequently can
keep you informed of progress and ease feelings of isolation - both important
to regaining a sense of control over your life.
Related Information
To stay informed about CFIDS matters important to PWCs and
those who care about them, sign up for the
Association's free monthly e-newsletter.
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