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Patients: Frequently Asked Questions
Q. What causes CFIDS?
A.
No single
cause of the illness
has been determined. Current research indicates that there are likely
multiple triggers resulting in the same set of symptoms. Many people report that
their symptoms began following a flu-like illness; others people report that the disorder began spontaneously
and symptoms became gradually worse. Physical trauma, genetics, immunological conditions, and possibly
severe emotional distress appear to be related to some cases.
Q. Is there a diagnostic test
for CFIDS?
A.
No, there is no blood, urine, or
imaging test to diagnose CFIDS. The keys to diagnosis are
identifying a characteristic pattern of symptoms and excluding other possible causes.
Q. Is there a cure for CFIDS?
A. No, there is no curative treatment
for the illness. However, there is a range of symptomatic and
supportive therapies that are helpful. With good medical care, improvements
in symptoms, function and quality of life are possible.
Q. What are the symptoms of
CFIDS?
A. According
to the 1994 International
Case Definition the symptoms
include: fatigue lasting for six months or longer that significantly affects lifestyle; in addition, four
or more of the following symptoms must be present [along with the debilitating fatigue]:
- Post-exertional malaise (lasting more than 24 hours)
- Sleep difficulties / unrefreshing
sleep
- Impaired memory or concentration
- Muscle pain
- Multi-joint pain
- Headaches of new type, pattern, or
severity
- Sore throat
- Tender lymph nodes in the armpit and neck
Q. How do I get a diagnosis?
A. Although it was developed as a research case definition, the
1994 International Case Definition is the prevailing document used for diagnosis. Diagnosis of chronic
fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome
(CFS), is a time-consuming and difficult process which is generally arrived at by
excluding other illnesses with similar symptoms and comparing a patient's symptoms with the case
definition. As yet, there is no indicator or diagnostic
test that can clearly identify the
disorder.
If you are typical of the person with
CFIDS, obtaining a diagnosis has been a frustrating experience. You are not
alone in your frustration. Support, information and understanding are offered
through the CFIDS Association. Visit the links at the bottom of this page
to learn more.
Additionally, a
"Do I Have CFIDS?"
questionnaire, designed to help
users determine if they might have CFIDS is available on this website. It is our
hope that this brief questionnaire will help prompt an
informed conversation with your health car
provider.
Q. How do I find a doctor who
is knowledgeable about CFIDS?
A.
Start by reading
The CFIDS Association of America's brochure, "Choosing a Health Care Provider."
A reliable source of referral often comes from area support groups where
people share information about their experiences as well as health care providers
who are CFIDS-knowledgeable. Support group listings are also available from the U.S.
Centers for Disease Control and Prevention.
Q. Is CFIDS a psychological
disorder?
A. No. All chronic
illnesses have significant medical, psychological and social components. CFIDS
is not simply a form of depression or anxiety, although these may result from
having a chronic, debilitating illness. CFIDS and depression share a few
similar symptoms, which may
be one reason for misdiagnosis. However, the physical symptoms of CFIDS
differ greatly than those of depression and can help
to differentiate between the two illnesses.
Q. How many people have CFIDS
and who gets it?
A. Current community-based surveys estimate that over 800,000 U.S. adults have the illness, yet, only
about
10% - 20% have been diagnosed. CFIDS affects men, women and children from all age, ethnic and
socioeconomic groups. Studies have shown the highest rates of the illness are in Latinos and African
Americans, followed by Caucasians and Asians.
Q. Where can I find a support
group?
A. Local support groups may
provide help in learning to cope with the many life changes that can occur due
to CFIDS. The CFIDS Association maintains state-by-state listings of CFIDS
support groups. To receive a list of support groups and contacts in your state,
e-mail your name and complete mailing address to
SupportGroups@cfids.org
or send a self-addressed, stamped
envelope to the CFIDS
Association of America, Attn: Support Group Info, PO Box 220398, Charlotte, NC 28222-0398.
Q. Will exercise, bed rest,
or diet changes help?
A. There are
treatments that
can help ease
symptoms. These include various medications that are given to help with specific symptoms,
such as sleep disturbances or pain; and alternative/complementary therapies such as
massage, yoga or Tai Chi. For more, click the treatment link
at the bottom of this page.
- Excessive activity may aggravate CFIDS symptoms,
however, a regular, gentle exercise program that is
specifically
designed for the ill person can be beneficial. PWCs have
varying degrees of activity tolerance and must carefully balance activity and rest.
- Bedrest is not an option for some PWCs. Those with severe
symptoms may be bedridden, while others have varying degrees of activity tolerance. Deconditioning
is a problem that can easily affect a person who is
bedridden or has limited amounts of daily physical activity. A rehabilitation professional familiar
with the
energy management problems of people with CFIDS (PWCs)
can help design a highly individualized activity regimen to optimize health and well-being for PWCs.
- Because many persons with CFIDS have
digestive problems (nausea, pain, irritable bowel syndrome), maintaining adequate
nourishment can be a challenge. Many fad diets call for an imbalanced food intake,
can create poor nutritional status and should be avoided. Food intolerances are also a problem for
a significant number of
people with CFIDS. Speak with your primary care provider and/or a
registered dietitian regarding your nutritional concerns.
Q. How long will it take to
recover?
A. It is not possible to
predict recovery. About one-third of persons with CFIDS recover almost fully,
but no one knows why. Some people recover in small to moderate degrees, while
others recover minimally, if at all. Still others have progressively worse
symptoms over time. Very little data exists about recovery rates for CFIDS; what we
do know is that, statistically, it appears that the best chance of recovery occurs in the first
five years of the illness. No treatments or physical characteristics or people with the illness have been
associated with recovery and, at this time, there are no reliable predictors of how long
the illness may last. According to one current research study, it appears that early
diagnosis and adequate treatment may alter the course of CFIDS.
Q. Should people with CFIDS
donate blood?
A. Donating blood may not be safe for
persons with CFIDS (PWCs), as research has shown that many PWCs have low blood volume and other vascular
problems,
and removing additional blood could provoke a relapse. Additionally, CFIDS patients should refrain from
donating blood,
bone marrow or organs, as it is currently unknown whether or not the illness may be
contracted in this manner.
Q. Can people with CFIDS
continue working?
A.
It is possible, but is
highly individualized and dependent on symptom severity and the demands of a
given job. PWCs experience a wide spectrum of disability ranging from people who can work a few part-time
hours to those who are unable to work at all. PWCs whose symptoms are mild may be able to
work full time. Community-based studies report that approximately 53% of persons with CFIDS continue to
work. Whenever possible, people should
be encouraged to continue working because of its benefits to self-esteem and economic security.
Decisions about changing employment status need to be considered carefully, obtaining as much information
as possible
regarding continuation of insurance and disability benefits. Occupational therapists may be helpful by
providing
tips on energy conservation, joint protection and other functional techniques.
Q. Are people with CFIDS eligible
for Social Security and
long-term disability benefits?
A. Yes. Like any other medically certified
illness, sickness benefits or disability allowances are an important part of
ensuring financial stability for people who are disabled by CFIDS. For more
information about disability benefits, click the legal issues link below .
Q. I get very discouraged at
times when I look back at the
changes in my life since CFIDS. What can I do?
A. These feelings are a common part of coping
with a
chronic
illness. Talk with your primary care provider and/or find a therapist, minister or
support group with whom you can voice your feelings. Cognitive behavioral therapy
is a method that has been used with some success to help persons with CFIDS cope
with the psychological aspects of having this illness. Although periods of sadness that last a day or
two are normal, extended periods of feeling sad, hopeless and "down" are troublesome; it's crucial to
seek medical help during these times because co-existing depression with CFIDS can affect other symptoms
and
general well-being.
Q. What is being done about
CFIDS?
A. Federal agencies, such as
National Institutes of Health and the U.S. Centers for Disease Control and
Prevention, along with organizations like the CFIDS Association of America,
encourage and support CFIDS research and education. The Association’s CFIDS
awareness, education, public policy and research programs have been effective in
focusing federal attention on CFIDS-related issues, engaging the scientific
community in the study of CFIDS and improving public awareness of the illness.
Learn more
about the Association-led efforts on behalf of the CFIDS community.
Q. What can I do to help?
A.
Depending on the severity of your
symptoms, you may consider becoming a participant in a research study or wish to
help educate others about the illness. Starting a support group in your area if
one does not exist, or becoming an active
part of an
existing support group are other
ways to help. You may be able to use your
computer, telephone or writing skills to communicate with others about the illness.
In April 2004, the Association launched a new online tool that makes participating in grassroots
advocacy, and reaching lawmakers, public health officials and the media with timely information about
CFIDS, easier than ever. Click on the Grassroots Action Center link
at the bottom of this page to get started. You may also
wish to join the CFIDS Association and/or make a financial donation to
support our efforts aimed at ending the pain and disability CFIDS causes.
Q. What is The CFIDS Association
of America?
A. The CFIDS
Association of America was founded in 1987 by a small group of individuals
intent on fighting back against the disease that had stolen so much of their
lives. The first dollar spent
by the organization was directed to medical research.
Since that time, the CFIDS Association has grown to become the nation’s largest and
most active charitable organization dedicated to conquering CFIDS and has invested over $15 million dollars
in this
important mission.
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