CFIDS Information (Chronic Fatigue and Immune Dysfunction
Syndrome)
From a layman's vantage
point, the terminlogy is terribly confusing - All the following are pretty much
describing the same condition
Fibromyalgia (fibro or FMS)
is a kissing cousin and often confused with CFS - Patients with fibromyalgia
usually ache all over, sleep poorly, are stiff on waking and feel tired all
day. They are prone to headaches, dizziness, numbness and tingling, itching,
facial rashes, fluid retention, crampy diarrhea and other symptoms.
Fibromyalgia may be closely related to the chronic fatigue and irritable bowel
syndromes. There are no reliable lab or x-ray abnormalities, but a physician
can confirm the diagnosis by finding multiple tender points in characteristic
locations
CFS - this is but one collection of symptoms
Examples:
Adult:
Child:
Examples:
· when laughing you cannot hold your head up or your knees buckle
· when telling a joke, you get to the punch line and then cannot say it
·
if you fall or
collapse, you are unable to speak or move, but you can hear and know that you
have not fallen asleep or fainted.
·
need a 1 hour or more
nap each day, but are still tired.
·
need 2 or more short
naps each day and feel refreshed
after each nap for awhile.
There are many other sleeping
disorders - most of these are treatable to the point of maintaining control
RLS vs PLMD
"Restless leg syndrome
(RLS)/periodic limb movement disorder (PLMD) is a sleep disorder characterized
by unpleasant physical sensations in the legs, often described as a motor
restlessness; relief of symptoms through movement, with worsening in a
recumbent position; and occurrence only in the evening, primarily at bedtime.
It is frequently relieved by movement (in the case of RLS) and is usually (but
not necessarily) associated with frequent and rhythmic leg kicking once asleep
(in the case of PLMD). If RLS is predominant, sleep-onset insomnia is the rule;
if PLMD is predominant, sleep-maintenance insomnia or daytime hyper somnolence
is more likely."
http://www.cfids.org/about-cfids/fact-sheet.asp
CFIDS Fact
Sheet
Chronic fatigue and immune
dysfunction syndrome ( CFIDS) is also called chronic fatigue syndrome (CFS). It
is recognized by the National Institutes of Health, U.S. Centers for Disease
Control and Prevention, Food and Drug Administration and Social Security
Administration as a serious, disabling illness.
CFIDS is characterized by
unrelenting exhaustion, muscle and joint pain, cognitive disorders and other
symptoms. Many people with CFIDS are denied disability benefits because doctors
and employers wrongly believe they are lazy or have a mental illness rather
than a serious physical condition.
Research on CFIDS is being
conducted on many fronts, but the cause of the disease remains a mystery.
SYMPTOMS
According
to the CDC, CFIDS is characterized by fatigue that is medically unexplained; of
new onset; lasts at least six months; is not the result of ongoing exertion; is
not substantially relieved by rest; and causes a substantial reduction in
activity levels.
CFIDS
fatigue must be accompanied by four or more of the following symptoms: impaired
memory/concentration; sore throat; tender neck or armpit lymph nodes; muscle
pain; headaches of a new type, pattern or severity; unrefreshing sleep; relapse
of symptoms after exercise; and pain in multiple joints.
Symptoms
can be severe. A survey of more than 8,000 medical professionals conducted by
The CFIDS Association showed most physicians believe CFIDS is as or more
disabling than lupus, rheumatoid arthritis and similar chronic conditions.
DIAGNOSIS
There
is no proven diagnostic test that identifies CFIDS in all cases.
CFIDS
is often difficult to recognize because it can resemble many other illnesses,
including mononucleosis, multiple sclerosis, Lyme disease and fibromyalgia.
To
make a diagnosis, physicians must rule out other possible causes of symptoms,
such as other medical disorders and medications known to cause fatigue.
Fewer
than 10 percent of CFIDS patients have been diagnosed and are receiving proper
medical care for their illness.
PREVALENCE
A
study conducted by DePaul University estimates that as many as 800,000 people
nationwide suffer from CFIDS .
CFIDS
has been shown to affect persons of all races, ages and socioeconomic groups.
Research
has confirmed that CFIDS is three times as common in women as men. It is more
common than multiple sclerosis, lupus, HIV infection and lung cancer in women.
Although
few studies of CFIDS in children and adolescents have been published, it has
been documented that children can get CFIDS, although less frequently than
adults.
RECOVERY
CFIDS
affects each individual differently. Some people with CFIDS remain homebound
and others get better to the point that they can resume work and other
activities, even though they continue to experience symptoms.
"Recovery"
rates for CFIDS are unclear. According to one of the few published studies, the
probability of significant improvement was about 30 percent during the first
five years of illness and 48 percent during the first 10 years. However, even
"recovered" patients stated that they still had some CFIDS symptoms,
and one-third had relapsed six months later.
TREATMENT
Since
there is no known cure for CFIDS , treatment is aimed primarily at symptom
relief. No single therapy exists that helps all patients with CFIDS .
Lifestyle
changes, including increased rest, reduced stress, dietary restrictions, gentle
stretching and nutritional supplementation, are frequently recommended.
CAUSE
Despite
an intensive, nearly 20-year search, the cause of CFIDS remains unknown. Many
different infectious agents, toxins and psychological causes have been
considered and rejected, but the search continues.
Much
of the ongoing research into a cause has centered on the role the immune,
endocrine and nervous systems may play in CFIDS .
Genetic
and environmental factors may play a role in developing and/or prolonging the
illness, although more research is needed.
NAME
CFIDS
is also known as chronic fatigue syndrome (CFS) and myalgic encephalomyelitis
(ME). It is widely acknowledged that the name chronic fatigue syndrome is
inadequate and demeaning, given the breadth and seriousness of the symptoms.
Advocates and federal officials are working together to find a new name.
GOVERNMENT RESPONSE
CFIDS
is a leading public health problem, yet federal funding for research on the
illness has declined since 1995. The CFIDS Association continues to press
Congress and federal health agencies to allocate more resources to the
investigation of CFIDS .
In
1999, the Social Security Administration issued guidelines for determining
disability benefits for persons with CFIDS. This recognition of CFIDS as a
disabling condition is a major step forward for patients who can no longer work
as a result of the illness.
ABOUT THE CFIDS ASSOCIATION
OFAMERICA
The
CFIDS Association of America is the leading organization dedicated to conquering
CFIDS and related disorders. The Association has invested more than $13 million
in CFIDS research, education and public policy efforts.
The
Association publishes The
CFIDS Chronicle, <../archives/chronicle-issues.asp> the world's most authoritative source
of information about CFIDS, and The CFS Research Review,
<../archives/research-review-issues.asp> a source of information on
diagnosis, treatment and research for medical professionals.