Chronic fatigue syndrome (CFS) is an emerging illness
characterized by debilitating
fatigue (experienced as exhaustion and extremely
poor stamina), neurological problems,
and a variety of flu-like symptoms. The illness
is also known as chronic fatigue immune
dysfunction syndrome (CFIDS), and outside of the
USA is usually known as myalgic
encephalomyelitis (ME). In the past the syndrome
has been known as chronic
Epstein-Barr virus (CEBV).
The core symptoms include excessive fatigue, general
pain, mental fogginess, and often
gastro-intestinal problems. Many other symptoms
will also be present, however they will
typically be different among different patients.
These include: fatigue following stressful
activities; headaches; sore throat; sleep disorder;
abnormal temperature; and others.
The degree of severity can differ widely among patients,
and will also vary over time for
the same patient. Severity can vary between getting
unusually fatigued following stressful
events, to being totally bedridden and completely
disabled. The symptoms will tend to
wax and wane over time. This variation, in addition
to the fact that the cause of the
disease is not yet known, makes this illness difficult
to diagnose.
What causes CFS?
The cause of the illness is not yet known. Current
theories are looking at the possibilities
of neuroendocrine dysfunction, viruses, environmental
toxins, genetic predisposition, or a
combination of these. For a time it was thought
that Epstein-Barr Virus (EBV), the cause
of mononucleosis, might cause CFS but recent research
has discounted this idea. The
illness seems to prompt a chronic immune reaction
in the body, however it is not clear
that this is in response to any actual infection
-- this may only be a dysfunction of the
immune system itself.
A recent concept promulgated by Prof. Mark Demitrack
is that CFS is a generalized
condition which may have any of several causes (in
the same way that the condition called
high blood pressure is not caused by any one single
factor). It *is* known that stressors,
physical or emotional, seems to make CFS worse.
Some current research continues to investigate possible
viral causes including HHV-6,
other herpes viruses, enteroviruses, and retroviruses.
Additionally, co-factors (such as
genetic predisposition, stress, environment, gender,
age, and prior illness) appear to play
an important role in the development and course
of the illness.
Many medical observers have noted that CFS seems
often to be "triggered" by some
stressful event, but in all likelihood the condition
was latent beforehand. Some people will
appear to get CFS following a viral infection, or
a head injury, or surgery, excessive use of
antibiotics, or some other traumatic event. Yet
it's unlikely that these events on their own
could be a primary cause.
Is CFS a "real" disease?
At this early point, many practicing clinicians remain
unconvinced that CFS is a genuine
illness, although it is slowly increasing in acceptance.
The reluctance is due in part to the
facts that (1) no specific cause has yet been found,
(2) there is no observable marker that
doctors can use to specifically identify the illness,
and (3) most doctors are not yet
familiar with the peer-reviewed research which does
tend to legitimize this disease.
Emerging illnesses such as CFS typically go through
a period of many years before they
are accepted by the medical community, and during
that interim time patients who have
these new, unproven illnesses are all too often
dismissed as being "psychiatric cases". This
has been the experience with CFS as well.
But many top-level researchers are showing that this
is a distinct, organic illness. This
includes research by Anthony Komaroff (Harvard),
Jay Levy (UCSF), Nancy Klimas (U.
Miami), Andrew Lloyd (U. New South Wales), Stephen
Straus (NIH), and others.
Who gets CFS?
Few studies address this question. Several show that
70 to 80 percent of CFS patients
are women, although some researchers say that these
are normal figures for any
immune-related illness. Some studies indicate that
CFS is less common among lower
income people and minorities, but critics point
out that the average CFS patient sees so
very many doctors before they can get a diagnosis,
that only those with great access to
medical care get counted in such studies, thus giving
a bias with regards to income and
race.
How do I find good medical care for CFS?
It is very important to find a health practitioner
who is familiar with this illness. The
symptoms of CFS can be mimicked by other illnesses
(autoimmune illnesses, cancer,
hepatitis, diabetes, etc.), and if you in fact have
another illness that is not properly
diagnosed, you may be losing out on getting treatments
that might be effective for you.
It is still an uphill struggle to find a doctor who
is experienced in diagnosing and treating
CFS. The best source of advice for identifying local
doctors who may be familiar with CFS
is your local support group. And the best way to
identify local support groups is to
contact one of your national organizations. If there
are no CFS-
knowledgeable doctors in your area and you wish
to find an out-of-town specialist, you may
read about such specialists from time to time in
the newsletter of your national
organization.
CFS definition
In addition to the official researchers' definition
discussed below, patients and
experienced clinicians have noticed symptom patterns
that seem prominent in CFS.
These are described above, and also include
the observations that
cognitive dysfunction often increases over time
(over several years), and that brain scans
often show that blood flow to the brain is decreased.
CFS is defined somewhat differently by various medical
groups in different countries. The
1994 research definition published by the U.S. Centers
for Disease Control and
Prevention recommends a step-wise approach for identifying
CFS cases. The first step is
to clinically evaluate the presence of chronic fatigue,
i.e. "self-reported persistent or
relapsing fatigue lasting 6 or more consecutive
months".
Conditions that explain chronic fatigue should exclude a diagnosis of CFS. These are:
- "any active medical condition
that may explain the presence of chronic fatigue
..." - any previous condition
which might explain fatigue and which has not
documentably come to an
end; - "any past or current diagnosis of a major
depressive disorder with
psychotic or melancholic features; bipolar affective
disorders; schizophrenia
of any subtype; delusional disorders of any subtype;
dementias of any subtype;
anorexia nervosa; or bulimia"; - substance abuse
within 2 years prior to
onset; - severe obesity.
The following should not exclude a diagnosis of chronic fatigue:
- conditions which cannot
be confirmed by lab tests, "including fibromyalgia,
anxiety disorders, somatoform
disorders, nonpsychotic or nonmelancholic
depression, neurasthenia,
and multiple chemical sensitivity disorder"; - any
condition which might produce
chronic fatigue but which is being sufficiently
treated; - any condition
which might produce chronic fatigue but whose
treatment has already been
completed; - any finding which on its own is not
sufficient to strongly suggest
one of the exclusionary conditions.
After the above criteria are met, the following core
criteria for CFS are applied: "A case of
the chronic fatigue syndrome is defined by the presence
of the following:
1) clinically evaluated,
unexplained persistent or relapsing chronic fatigue that is of
new or definite onset (has
not been lifelong); is not the result of ongoing exertion; is
not substantially alleviated
by rest; and results in substantial reduction in previous
levels of occupational,
educational, social or personal activities; and
2) the concurrent occurrence
of four or more of the following symptoms, all of which
must have persisted or recurred
during 6 or more consecutive months of illness and
must not have predated the
fatigue:
-
self-reported impairment in short term memory or concentration severe
enough to cause substantial reduction in previous levels of occupational,
educational, social or personal activities;
- sore throat;
- tender cervical or axillary lymph nodes;
- muscle pain;
- multi-joint pain without joint swelling or redness;
- headaches of a new type, pattern or severity;
- unrefreshing sleep;
- and post exertional malaise lasting more than 24 hours."
The journal citation for the CDC definition article
is: Keiji Fukuda, Stephen Straus, Ian
Hickie, Michael Sharpe, James Dobbins, Anthony Komaroff,
and the International CFS
Study Group. "The
Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition
and Study".
Ann Intern Med. 1994;121:953-959.
Clinical views
Several helpful guides to diagnosis have been written
by researchers and experienced
clinicians, including an article by Charles Lapp
and books by Charles Shepherd and by
David Bell. See the references under question
on treatments.
Drs. Buchwald and Komaroff did a study which surveyed
the most common symptoms
found in those meeting the 1988 CDC criteria. [Komaroff
AL, Buchwald D. Symptoms and
signs of chronic fatigue syndrome. Rev Infect Dis
1991;13(Suppl 1):S8-11.] They found the
following frequencies:
Symptom/sign Frequency (%)
fatigue
100
low-grade fever
60 - 95
myalgias
20 - 95
sleep disorder
15 - 90
impaired cognition
50 - 85
depression
70 - 85
headache
35 - 85
pharyngitis
50 - 75
anxiety
50 - 70
muscle weakness
40 - 70
Postexertional malaise
50 - 60
worsening of premenstrual
50 - 60
symptoms
stiffness
50 - 60
visual blurring
50 - 60
nocturia
50 - 60
nausea
50 - 60
dizziness
30 - 50
arthralgias
40 - 50
tachychardia
40 - 50
dry eyes
30 - 40
dry mouth
30 - 40
diarrhea
30 - 40
anorexia
30 - 40
cough
30 - 40
digital swelling
30 - 40
night sweats
30 - 40
painful lymph nodes
30 - 40
rash
30 - 40
What are the specific treatments available for CFS?
Many treatments are available. Most seem to be of
limited usefulness, however different
patients will respond differently and in some instances
there is good response. An FAQ on
treatments is being developed, and more detail about
these issues will be discussed
there. Please see the subsections immediately below
for a discussion of treatments.
Avoid stress
As odd as it may seem, typically the most beneficial
program is for the patient to avoid
stress and to get lots of rest. This is usually
the most effective regimen, among others
that might also be undertaken. Stress does not merely
mean unpleasant experiences, but
rather any biological stressors, physical or emotional,
which prompt a protective reaction
in the body and which may alter physiologic equilibrium
("homeostasis"). (Read the
discussion about stress) Failure to avoid stress
often leads to
short-term and long-term set-backs which may be
serious. Many patients believe that if
they had done more to avoid stress in the early
phases of the illness, they would not have
become nearly so disabled later on. The correlation
between stress and the progress of
this illness appears to be strong.
Medications
Treatments tend to address the symptoms, since the
underlying mechanism of the
disease is not really understood. Medications which
are helpful are often those which have
immune-modulating characteristics. CFS patients
are unusually sensitive to drugs and
they usually must take doses that are 1/4 or less
than standard doses. Some drugs will
be a big help to some patients and little or no
help to others. And drugs that seem to
work for a while may stop being effective later.
According to studies presented at the October 1994
CFS medical conference, widely
used treatments included: SSRIs ("selective serotonin
re-uptake inhibitors" such as Zoloft,
Paxil and Prozac) used to address fatigue, cognitive
dysfunction and depression; low dose
TCAs ("tricyclic anti-depressants" such as doxepin
and amitriptyline) for sleep disorder,
and muscle and joint pain; and NSAIDs ("non-steroidal
anti-inflammatory drugs" such as
ibuprofen and naproxen) for headache, and muscle
and joint pain. Other treatments often
prescribed are Klonopin, intra-muscular gamma globulin
(IMgG), nutritional supplements
(particularly anti-oxidants, B-vitamins generally
and B-12 specifically), herbs, and
acupuncture. Less often prescribed were chiropractic
therapy, intra-muscular gamma
globulin (IVgG), kutapressin, antivirals, interferon,
and transfer factor.
Research from Johns Hopkins University in 1995 indicate
that treatment for neurally
mediated hypotension may be effective for the many
CFS patients who may show positive
for that condition.
Role of exercise
CFS patients will need to avoid stressful activities,
and each patient's toleration for stress
will be different, and can change). It is nonetheless
important for patients who can
exercise to do so, up to their level of toleration.
But this should be done with great care,
since crossing the "invisible line" of exercise
intolerance for this illness may prompt a
serious relapse, and may negatively affect the longer-term
future course of the illness.
Dietary changes
CFS patients appear to be alcohol intolerant. Other
food products often recommended
against include caffeine, sugar and nutrasweet.
Since in many patients it appears that the
immune system is over-active, it may be more important
than usual to take nutritional
supplements to replenish burnt up reserves.
Many patients have or develop food sensitivities,
and in these cases relief may be found by
avoiding foods that prompt problems. Patients tend
to gain weight and they don't have
vigorous exercise available as a counterbalance,
so diet needs to be monitored with this in
mind.
Secondary problems
There can be several related problems, such as yeast,
that need to be watched out for.
Also, CFS has so many symptoms that it's easy to
ascribe all new anomalies to this
disease. But CFS patients are not exempt from getting
other illnesses also, therefore it is
important to regularly monitor your health and to
consult with your doctor about the
changes as they progress.
What is the role of stress and psychology in CFS?
Preliminary research suggests that CFS may involve
a brain disorder -- specifically, HPA
dysfunction (see question 2.16) -- which affects
the stress response system in our bodies.
CFS patients are standardly observed to be hypersensitive
to stress. Stress does not
merely mean unpleasant experiences, but rather any
biological stressors, physical or
emotional, which prompt a protective reaction in
the body and which may alter the
physiologic equilibrium known as "homeostasis".
Stress in this physiological sense may be
subtle and may not necessarily be noticed. Merely
hearing loud sounds or seeing bright
lights may be stressful in this context.
High-stress events sometimes seem to "trigger" the
first appearance of the illness, and they will
usually worsen the symptoms if the illness has already
developed. Because stress is often mistakenly thought
of as a purely emotional
phenomenon with no physical aspect, the correlation
of CFS with stress makes some
people imagine that CFS must a non-physical "psychological
illness". Medical studies show
that stress plays an important role in several immune-mediated
illnesses, and in fact a
new field of research called psychoneuroimmunology
has been created to study just this
phenomenon.
HPA and neurotransmitter dysfunction may make CFS
patients excessively irritable, and
may prompt panic attacks. These behaviors might
be misinterpreted, thereby reinforcing
a misconception that CFS is merely a psychological
condition.
How does CFS usually begin?
For a slight majority of patients, the illness begins
suddenly as though one had come down
with the flu. Except that this "flu" doesn't seem
to completely go away. For many other
patients, the onset appears gradually over a long
period of time.
In many cases, a high-stress event seems to "trigger"
the illness. There are many cases in
which CFS appears to have begun with a severe head
injury, for example. But since such
events seem to have no apparent logical connection
to the illness that follows, many have
speculated that the CFS was latent in people beforehand
in these cases, and that the
stress of trauma merely triggered the stress-hypersensitivity
aspect of the illness. Some
have further speculated that other stressful factors
in our environment, be they microbes
or pollution, may also prompt this illness to bloom.
How long can CFS last?
The illness varies greatly in its duration. A few
recover after a year or two. More often,
those who recover are more likely to do so from
3 to 6 years after onset. Others may
recover after a decade or more. Yet for some, the
illness seems to simply persist.
CFS often occurs in cycles. It can be frustrating
to obtain some relief, but then not know
whether you have recovered or if you are merely
between cycles.
Is CFS contagious?
Since the cause of the illness is not known, the
question of contagion is not known. Many
studies suggest that there is no correlation between
CFS and casual or intimate contact.
On the other hand, there are infrequent but occasional
reports of cluster outbreaks of
CFS. How that can happen, while at the same time
in other instances intimate family
members do not pass on the disease, remains one
of the mysteries of this illness.
Is CFS genetic?
Several studies suggest that there may be a genetic
component to CFS. This is not
surprising since CFS seems to involve immune dysfunction
to some degree, and
immune-related illnesses often have a genetic component.
The evidence on this point is
not clear. And the fact that there seem to be cluster
outbreaks of this illness seems to
argue against genetics as being the sole factor.
Is CFS related to depression?
Many emerging illnesses, before they have gained
acceptance by the medical community,
have initially been discounted as being hysteria,
depression, somatoform disorders, etc.
One hundred years ago, polio was dismissed in just
that fashion. When CFS gained notice
in recent times, many of its symptoms were correlated
to depression, and many un-read
physicians today still believe that's what CFS is.
Much recent research, notably the finding
by Demitrack that cortisol levels are low in CFS
patients whereas in depressed people
they are high, indicates that CFS is not depression.
Other noted differences are that CFS
patients tend to overestimate their abilities, retain
a strong interest in life, and respond
poorly to exercise, whereas the opposite are typically
observed in people who are
depressed.
A politico-economic aspect of this issue is that
health insurers have an incentive to
classify patients as having temporary illnesses
that can be treated cheaply and in a short
time. Depression is considered to be a short-term,
treatable illness.
Another issue is that CFS patients can get "secondary
depression" if their lives have been
disrupted because their illness has interfered with
their job or their social or family life.
This indirect consequence of the illness may be
taken by some medical professionals as
indicating a cause rather than an effect of the
observed symptoms.
How does CFS relate to other similar illnesses
such as fibromyalgia, multiple chemical sensitivities,
Gulf War syndrome, neurally mediated
hypotension, Lyme disease, candida, etc.)?
There are several conditions whose symptoms and patterns
are so similar that many
believe there must be a common mechanism involved.
Some research has suggested that
dysfunction of the hypothalamic-pituitary-adrenal
(HPA) axis may be implicated in several
or all of these conditions. This axis controls stress
response and many other bodily
functions. If HPA dysfunction is truly involved
in many of these conditions, it would be little
surprise since the neuroendocrine mechanisms of
the HPA axis are both complex and
delicate, and thus minor variations in such a dysfunction
might well produce the variants
we are seeing in these similar illnesses.
How does CFS relate specifically to fibromyalgia?
Many people believe these may be the same illness,
as discussed in the previous question
above. However, CFS researcher Dr. Paul Cheney notes
that CFS patients have a strong
intolerance for exercise, while for fibromyalgia
patients, exercise is recommended as
being therapeutic. An article by Dr. Muhammed Yunus
discusses a comparison between
these two conditions.
There is a patients discussion group for fibromyalgia
on Internet and Usenet, and there
are web pages and information files available. To
find fibromyalgia information on the web,
you can begin by exploring the links at http://www.cais.net/cfs-news/fibro.htm.
The
discussion group is available on Usenet as newsgroup
alt.med.fibromyalgia. It can be
followed as a mailing list by sending the command
SUB FIBROM-L YourFirstName
YourLastName as an e-mail message to the address
LISTSERV@MITVMA.MIT.EDU.
There are fibromyalgia FAQs for patients,
for doctors, and a
help file about pain,
all
available by e-mail. To obtain them, create an e-mail
message which says
GET FIBROM-L
PT-FAQ
GET FIBROM-L
MD-FAQ
GET FM-PAIN
HANDOUT
and send to address LISTSERV@MITVMA.MIT.EDU.
How does CFS relate to the Epstein-Barr virus?
The Epstein-Barr virus (EBV) is the cause of mononucleosis,
and a well-publicized study in
1985 suggested that there may be a strong correlation
to CFS. But many doctors have
not read the later research that has minimized what
at first seemed to be a strong link.
The original apparent correlation was described
in:
Straus SE, Tosato G, Armstrong
G, Lawley T, et al. Persisting illness and fatigue
in adults with evidence
of Epstein-Barr infection. Ann Intern Med 1985;
102:7-16.
Later studies showed that many CFS patients have
had no exposure to EBV at all. This
clarification has been shown in:
Buchwald D, Sullivan JL,
Komaroff AL. Frequency of "chronic active
Epstein-Barr" virus infection
in a general medical practise. JAMA 1987;
257:2303-7.
Holmes GP, Kaplan JE, Stewart
JA, et al. A cluster of patients with a chronic
mononucleosis-like syndrome.
JAMA 1987; 257:2297-302.
EBV, and other viruses, may ultimately be found to
play some role in CFS in many
patients. But based on the studies cited above,
it would not be appropriate to rule a
diagnosis of CFS based solely on a negative test
for EBV.
Where to get Help in New Zealand
A.N.Z.M.E. Society, PO Box 35-429, Browns Bay, Auckland
10
for international resourses see the CFS
FAQs
Where to get the current version of this FAQ
Usenet: posted regularly to newsgroup alt.med.cfs,
with subject FAQ: CFS FAQ
E-mail: create an e-mail message whose text
reads GET CFS FAQ and send to
LISTSERV@MAELSTROM.STJOHNS.EDU. For those who cannot receive
such a large file (about 75 Kbytes) as a single e-mail, then send
a message that says GET CFS FAQ SPLIT=40K as e-mail to that same
address.
Web: http://www.cais.net/cfs-news/faq.htm
ftp: rtfm.mit.edu at directory
and filename
/pub/usenet/news.answers/medicine/chronic-fatigue-syndrome/cfs-faq
Other usefull links:
CFIDS Association of America, Inc
http://www.cais.com/cfs-news/dr-bob.htm
http://www.bluecrab.org/health/sickids/sickids.htm
CFS Network
Help file,
http://www.theriver.com/Public/cfids/clinks~1.htm
http://infd21286.infd.cwru.edu/cfs.htm