
faq_807263874@rtfm.mit.edu>
faq_809883114@rtfm.mit.edu>
as
          chronic fatigue syndrome (CFS), also known as myalgic 
encephalo-
          myelitis (M.E.) and chronic fatigue and immune dysfunction
          syndrome (CFIDS).


Archive-name: medicine/chronic-fatigue-syndrome/cfs-faq
E-mail: send GET CFS FAQ to LISTSERV@SJUVM.STJOHNS.EDU
Web: http://metro.turnpike.net/C/cfs-news/faq.html

   In the future we may split this document into several parts, but for
   now this document is quite long (over 1500 lines) and you may wish to
   save it as a file or print it out.
   
   

                                 The CFS FAQ

                               C O N T E N T S

   Part 0: Administrivia
   0.00 Copyright
   0,01 Introduction
   0.02 Disclaimer
   
   
   Part 1: General
   1.01 What is CFS?
   1.02 What causes CFS?
   1.03 Is CFS a "real" disease?
   1.04 Who gets CFS?
   1.05 Shouldn't this illness have a better name?
   
   
   Part 2: Medical issues
   2.01 How do I find good medical care for CFS?
   2.02 What symptoms are used to diagnose CFS?
   2.021 CFS definition
   2.022 Clinical views
   2.03 What are the specific treatments available for CFS?
   2.031 Avoid stress
   2.032 Medications
   2.033 Role of exercise
   2.034 Dietary changes
   2.035 Secondary problems
   2.036 Article references
   2.04 What is the role of stress in CFS?
   2.05 What research is currently going on?
   2.06 How does CFS usually begin?
   2.07 How long can CFS last?
   2.08 Is CFS contagious?
   2.09 Is CFS genetic?
   2.10 Do people die from CFS?
   2.11 Is CFS related to depression?
   2.12 Is CFS related to AIDS?
   2.13 Does CFS increase the likelihood of cancer?
   2.14 How does CFS affect children?
   2.15 How does CFS relate to pregnancy?
   2.16 How does CFS relate to other similar illnesses such as
   fibromyalgia, multiple chemical sensitivities, Gulf War syndrome,
   neurally mediated hypotension, Lyme disease, candida, etc.)?
   2.17 How does CFS relate specifically to fibromyalgia?
   2.18 How does CFS relate to neurally mediated hypotension?
   2.19 How does CFS relate to the Epstein-Barr virus?
   
   
   Part 3: Life problems created by CFS
   3.01 How does one live with CFS?
   3.02 How do I find support groups?
   
   
   Part 4: Income security: Job and/or disability benefits
   4.01 How do I handle problems about my job?
   4.02 What problems do I face in seeking disability benefits?
   
   
   Part 5: CFS information resources
   5.01 What other FAQs are available?
   5.02 What books are available?
   5.03 What newsletters and magazines are available?
   5.04 What CFS resources are available on Internet and Usenet?
   5.05 What CFS resources are available on other electronic networks?
   5.06 What national organizations are there?
   
   
   Part 6: Important information
   6.01 What else is important for me to know about CFS?
   6.02 What is "May 12 / International Awareness Day"?
   
   
   Appendices
   A1. Where to get the current version of this FAQ
   A2. Articles on-line
   A3. Common abbreviations
   A4. Further information
   A5. Changes to this edition
   A6. Development of this FAQ
   A7. Credits

------------------------------


------------------------------


The CFS FAQ is copyright (c) 1995 by Roger Burns on behalf of the CFS 
Internet
Group.  Permission is granted to redistribute or quote this document for
non-commercial purposes provided that you include an attribution to the 
CFS
Internet group, the contact address of CFS-L-REQUEST@LIST.NIH.GOV, the 
FAQ's
version number and date, and at least two locations from which a current
version of this FAQ may be retrieved (see Appendix 1).  For any other 
use,
permission must be obtained in writing from Roger Burns
(CFS-L-REQUEST@LIST.NIH.GOV).

------------------------------


This document answers frequently asked questions (f.a.q.) about chronic
fatigue syndrome (CFS).

------------------------------


The information presented in this document was written and developed by
patients.  It represents an informal catalog of accumulated knowledge by
people who for the most part are not medical professionals.  As this 
file is
developed further, we hope to include references and citations which 
will
document the statements that are made here.  In any case, as useful as 
this
information may be it must not be considered to be medical advice, and 
must
not be used as a substitute for medical advice.  It is important that 
anyone
who has, or thinks they may have, CFS should consult with a licensed 
health
care practitioner who is familiar with the syndrome.

Back to the top
------------------------------


------------------------------


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.

------------------------------


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.

------------------------------


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 
that
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.

Physicians and scientists may find the following citations of interest:

Levine P; et al. "CFS: Current Concepts" (proceedings of the Oct. 1992 
CFS
medical conference), Vol. 18 Suppl. 1, January 1994, Clinical Infectious
Diseases.

Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic
abnormalities in chronic fatigue syndrome". J of Clinical
Microbiology 28:1403-1410 (June 90)  [Study showing that NK
cells (a kind of immune cell) malfunction in CFS patients; other
abnormalities]

Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness
characterized by fatigue, neurologic and immunologic disorders
and HHV-6 infection". Ann Int Med 116:103-112 (Jan 1992)  [Study
showing many CFS patients have HHV-6 infections]

Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired
Activation of the Hypothalamic-Pituitary-Adrenal Axis in
Patients with Chronic Fatigue Syndrome". J of Clinical
Endocrinology & Metabolism 73:1224-34 (Dec 1991)  [shows
chemical abnormalities in the brains of CFS patients]

Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte
Phenotype and Function in the Chronic Fatigue Syndrome". J of
Clinical Immunology 13:30-40  (Jan 93)  [Study showing T4 cell
(a type of immune cell) abnormalities in CFS patients]

Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo;
"Infection of natural killer cells by human herpesvirus 6".
Nature 362:458-462 (April 1 1993)  [HHV-6 -- previously found in
CFS patients -- now shown to kill NK cells (a type of immune
cell) -- a small but important advance in research]

Schwartz R, Komaroff A, Garada B, Gleit M, Doolittle T, Bates D, Vasile 
R,
Holman B.  "SPECT Imaging of the Brain: Comparison of Findings in 
Patients
with Chronic Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar
Depression"  AJR 1994:162:943-951.

Schwartz R, Garada B, Komaroff A, Tice H, Gleit M, Jolesz F, Holman B.
"Detection of Intercranial Abnormalities in Patients with Chronic 
Fatigue
Syndrome: Comparison of MR Imaging and SPECT"  AJR 1994:162:935-941.

Rowe, P; Bou-Holaigah, I; Kan, J; Calkins, H;. "Is Neurally Mediated
Hypotension an Unrecognized Cause of Chronic Fatigue?". Lancet 345:623-
624
(March 11, 1995).

------------------------------


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.

------------------------------


There have been many complaints since the name CFS was adopted in 1988 
by the
U.S. Centers for Disease Control that this name trivializes the illness 
and
reinforces the perception that it may not be a legitimate disease.  U.S.
policy currently is that there is much medical literature tied to the 
current
name, and that a change of name should wait at least until an accepted
biological marker is found.  There have been attempts to associate an 
eponym,
such as "Nightingale Syndrome", with the scientific name of the illness 
but
there has been no groundswell of support yet for any specific eponym or 
other
alternative name.  (Florence Nightingale had an undiagnosed, 
debilitating
disease for many decades.  See also question 6.02.)

Back to the top
------------------------------

Part 2:  Medical issues

------------------------------


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 (see question 5.06).  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.

If your own doctor is sympathetic but not knowledgeable, you might 
gather
together some medical articles which discuss CFS treatments and 
encourage your
doctor to study them.  (See the next question, part B.)  Read the essay 
on
"Dealing with Doctors When You Have CFS" by Camilla Cracchiolo, R.N. 
which can
be obtained by sending the command GET CFS HANDLEDR as an e-mail message 
to
the address LISTSERV@SJUVM.STJOHNS.EDU.

------------------------------


------------------------------


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 in question 1.01 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.

------------------------------


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 the next
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

Back to the top
------------------------------


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.

------------------------------


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 under question 2.04.)  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.

------------------------------


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.

------------------------------


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.

------------------------------


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.

------------------------------


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.

------------------------------


The following are citations of articles on CFS medical treatment that 
your
doctor may find useful.

Conservative approaches

"Management of a Patient with Chronic Fatigue Syndrome" by Nelson Gantz;
appears as Chapter 14 in the book "Chronic Fatigue Syndrome" edited by
David Dawson and Thomas Sabin, 1993, Little, Brown & Co.

"Treatment of the Chronic Fatigue Syndrome: A Review and Practical 
Guide",
Edith Blonde-Hill and Stephen D. Shafran, Drugs 46(4):639-651, October
1993.

"Psychotropic Treatment of Chronic Fatigue Syndrome and Related
Disorders", PJ Goodnick and R Sandoval; J Clin Psychiatry 54(1):13-20
January 1993

Moderate/aggressive approaches

[The following are available by mail order from the CFIDS Association of
America, Inc., PO Box 220398, Charlotte, NC 28222-0398 USA.  Several of
these are also available on Internet by e-mail retrieval; see 
instructions
below.]

"Chronic Fatigue Syndrome is a Real Disease", Charles Lapp; North 
Carolina
Family Physician, Winter 1992. $3.00

Series of articles in Sept. '92 "Diagnosis" edition of CFIDS Chronicle, 
by
Drs. Bell, Calabrese et al., Cheney and Lapp, Jay Goldstein, Hickie and
Wakefield, Klimas, and other useful letters and reports.  $8.00

Series of articles in Fall 1993 "Treatment" edition of CFIDS Chronicle, 
by
Drs. Cheney and Lapp, Dimitri Viza and Giancarlo Pizza, Perry Orens,
Edward Conley DO, Burke Cunha, James McCoy, Jay Goldstein and others.  
$10.00

Book: "The Doctor's Guide to Chronic Fatigue Syndrome", Dr. David Bell, 
1994.
$21.00.

Book: "Living With M.E.", Dr. Charles Shepherd, M.D., revised 1992.  
$15.00

There are a series of medical articles on the diagnosis and treatment of 
CFS
which are available on the SJUVM Listserv on the Internet.  See Appendix 
2 at
the end of this document.

Back to the top
------------------------------


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 (see question 2.06), 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.

See also question 2.11 which discusses depression, and the questions 
under
Part 3 of this document, "Life problems created by CFS".

------------------------------


There is a great deal of research going on, regarding the possible cause 
of
CFS, many of its symptom mechanisms, possible biological markers, 
treatments,
and epidemiology.

Dr. Mark Demitrack (U. Michigan) and Dr. Stephen Straus (NIH) and others 
are
studying the dysfunction of the hypothalamic-pituitary-adrenal axis as 
being a
possible major explanation for CFS.  Dr. Peter Rowe (Johns Hopkins) is
studying the possible link between CFS and neurally mediated 
hypotension.  Dr.
Anthony Komaroff (Harvard) and Dr. Dharam Ablashi (Georgetown) are 
researching
the possible roles of HHV-6 and EBV (to decipher these abbreviations, 
see
Appendix 3).  Dr. W. John Martin (U. So. Calif.) is studying the 
"Stealth"
virus.  Dr. Michael Holmes (U. Otago) is researching another mysterious,
virus-like particle.  Drs. Nancy Klimas, Roberto Patarca (of U. Miami) 
and Jay
Levy (UCSF) are investigating immunological abnormalities.  Drs. Hugh 
Dunstan
and Timothy Roberts (U. Newcastle) are researching a possible biological
marker found in urine.  Drs. Paul Cheney, Charles Lapp (of Cheney 
Institute)
and Jay Goldstein (CFS Institute) are studying various treatments.  The 
CDC
team led by Drs. Keiji Fukuda and William Reeves are undertaking 
prevalence
studies in the USA.  These are just a few of the more prominent studies 
now
on-going.

------------------------------


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.

------------------------------


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.

------------------------------


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.

------------------------------


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.

Back to the top
------------------------------


Essentially, the answer is no.  Little about how CFS works in our bodies 
would
suggest that it could be fatal.  The slowing of metabolism and the 
weakening
of muscle function, possibly including heart function, might raise some
possibilities.  But as a general matter, by no means should CFS be 
considered
to be a terminal illness.

On another front, CFS in the more severe cases can be so disabling, and 
the
public and medical understanding of the disease can be so minimal, that 
many
people have seen their lives taken away through loss of job, loss of 
support
from family and friends, and loss of ability to take care of oneself.  
In the
face of these vast irrational and deeply painful changes, there are many 
CFS
patients who have taken their own lives.  And so in these cases, what 
was the
cause of death?

------------------------------


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.

See also question 2.04 above, regarding stress and psychology.  Also, 
the
differences between CFS and other conditions, including depression, is
discussed in the Calabrese article -- see Appendix 2.

------------------------------


Enough is known about the mechanisms of both diseases to say that they 
are not
the same.  The fact that they both seem to involve the immune system, 
and that
some not-fully-researched viruses might have some effect in both, have 
caused
a few people (notably Neenyah Ostrom, a writer for the New York Native) 
to
speculate that there is a common mechanism.  The facts that CFS has no
correlation to HIV nor shows any AIDS-like breakdown of the immune 
system
shows that these illnesses are not the same.  It is nonetheless true 
that the
broad family of immune-related illnesses are becoming increasingly 
important
in these times.

------------------------------


There have been no formal studies about this question to date.  
Clinicians
dealing with the illness have not noticed any higher incidence of cancer 
among
their CFS patients.  The issue is raised, however, because some research 
shows
that CFS patients have impaired natural killer (NK) cell activity, and 
it is

_
                                                                                                           

the NK cells which primarily protect against cancer.  So this is an 
issue that
bears watching.

------------------------------


One of the special aspects of CFS in children is that their self-image 
and
their sense of their own abilities do not develop in a normal fashion, 
because
they have little or no memory of their pre-CFS abilities.  This surely 
plays
an important and negative role in their personal development.

An information packet named "CFIDS In Children" is available for $5.50 
from
the CFIDS Association (see address under question 5.06).

------------------------------


If anything, in many cases the illness seems to be lessened for the 
mother
during pregnancy, and no problems have been noticed with the children.
Another aspect to consider is that the responsibilities of parenthood 
are many
and are stressful, and this should be considered when planning a family.

Back to the top
------------------------------

                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.

The similarities and differences between CFS and other conditions are
discussed in the article by Calabrese et al. -- see Appendix 2.

There are many network resources available that provide discussion and
information about these related conditions.  See the CFS Network Help 
file,
described under question 5.04.

------------------------------


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 --
see Appendix 2.

There is a patients discussion group for fibromyalgia on Internet and 
Usenet,
and there are information files available.  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@VMD.CSO.UIUC.EDU.  There is a
fibromyalgia patients' FAQ and a doctors' FAQ available by e-mail,
as well as a help file on handling fibromyalgia pain.  To obtain them, 
send
the commands

   GET FIBROM-L PT-FAQ
   GET FIBROM-L MD-FAQ
   GET FM-PAIN HANDOUT

as an e-mail message to the address LISTSERV@VMD.CSO.UIUC.EDU.

------------------------------


This is a new area of study.  Researchers at Johns Hopkins University 
have
discovered what appears to be a link between CFS and a well established
cardiac condition called neurally mediated hypotension.  The fact that 
this
known cardiac condition has diagnostic tests and treatments that are
already accepted by medical science has important implications for CFS
research and medical care.  The journal citation for this study is 
listed at
the end of question 1.03 above.  To obtain a special edition of the CFS-
NEWS
electronic newsletter which describes this research, send the command 
GET
CFS-NEWS 045 as an e-mail message to the address 
LISTSERV%ALBNYDH2@ALBANY.EDU.

Neurally mediated hypotension, which is also known a vasodepressor 
syncope,
involves mis-regulated blood flow and blood pressure which can lead to
recurrent fainting.  The Hopkins study seems to indicate that many more 
people
who do not have recurrent fainting may nonetheless have this condition, 
*and*
many in this wider group have chronic fatigue generally and CFS in 
particular.
The patients in the Hopkins study who have gotten benefit from the 
treatment
have been enthusiastic about the results, although the Hopkins 
researchers
themselves are much more conservative in their claims at this early 
point in
their research. Although the results from this treatment are very 
encouraging,
not all patients in the study respond positively to the therapy.


------------------------------



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.

Back to the top
------------------------------


------------------------------


- Know that it's not you.  It takes a lot to adjust to your new, 
lessened
capabilities, and the adjustment is made more difficult by the 
expectations of
you and those around you who have been long accustomed to dealing with 
your
"normal, healthy self".

- Patients often find an equilibrium point at which they can function.  
As in
combating any chronic illness, a positive hopeful attitude is essential.

- Be prepared for a possible lack of acceptance from some from whom you 
might
expect support.  This may be a shock, but when you cannot regularly "go
bowling" with the gang, or you increasingly depend on being accommodated 
at
home or on the job, and when you have a condition that your doctor may 
not
certify or that other people have already heard of as "that yuppie 
disease",
then your emotional world will become quite different.

- Find new sources of support.  It will be important to create a new
family-and-friends support structure.  This can be done through CFS 
support
groups, electronic networking, pen pals, and other means.

-   You will need to take the time to create a new self image for 
yourself, to
know that your new physical limitations do not limit you as a person, as 
a
soul, no matter what other people are thinking.  And take some advice 
from
those who have traveled this difficult road before you -- consider 
reading
from books like those below:

  "The Alchemy of Illness" by Kat Duff, 1993, Pantheon Book, New York. 
$19

  "Recovering from Chronic Fatigue Syndrome: A Guide to Self-
Empowerment"
  by William Collinge, 1993, The Body Press/Perigee, New York. $13.95

  "Living With Chronic Fatigue Syndrome" by Timothy Kenny, 1994, 
Thunder's
  Mouth Press, New York.  $12.95

------------------------------


To find local support groups, ask your national support organizations.  
See
the list under question 5.06.

To find electronic support groups, see the references under questions 
5.04 and
5.05 below.

Back to the top
------------------------------


------------------------------


 - If your work is, or will likely be, affected by your illness, educate 
your
boss about your condition.  Do this soon.  You may need their support 
later
when more problems may arise, and it will be easier to educate them 
while you
are still relatively productive and "credible".

 - Understand that you might have to make some severe changes: a change 
of
job, or perhaps an involuntary loss of your job and a shift to 
disability
benefits.

 - Beware of the trap of losing important disability benefits if you 
switch to
part time work.  Many CFS patients whose health was spiraling downwards 
had
switched to part-time work to preserve their place with their employer.
Later, when their health deteriorated even more and they needed to seek
disability benefits, they found out too late that those benefits for a
part-time employee did not include a livable income, whereas if they had 
gone
straight from full-time to disability, the disability payments were much 
more
livable.  Be careful.

------------------------------


This section will describe some resources for USA disability benefits.
Contact the national organizations under question 5.06 for other 
countries.

Some on-line files have some helpful information.  At the SJUVM Listserv 
you
can get filename CFIDS941 RYAN.  At the Albany Listserv get the files 
named
CFS SOCSEC1, CFS SOCSEC2, CFS SS-PROC and CFS SS-BOOK.  See Appendix 2 
below
for instructions on how to obtain these files via e-mail.

A "Disability Packet" is available for $5.00 from the CFIDS Association 
(see
question 5.06 for the address).  They also offer the "Disability 
Workbook for
Social Security Applicants" by Douglas Smith, Atty. for $15.00.

Back to the top
------------------------------


------------------------------


There are CFS FAQs about resources on Internet/Usenet, on BBSs and 
commercial
networks, and others.  A treatments FAQ will be developed, and other
specialized FAQs may also be developed.

All of these are described in the CFS Index to FAQs.  See the posting on 
this
subject on the alt.med.cfs newsgroup, or alternatively send the command 
GET
CFS INDEX as an e-mail message to the address 
LISTSERV@SJUVM.STJOHNS.EDU.

------------------------------


Note the support-oriented books listed under question 3.01 above, and 
the
medical articles shown under questions 1.03, 2.02 and 2.03.  Here are 
other
good resources:

"A Doctor's Guide to CFS", by Dr. David Bell, 1994.  275 pp.  $21 from 
the
CFIDS Association (see below).

"Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new edition 
for
1992, by Dr. Charles Shepherd, MD.  380 pp. North America: $15 from the 
CFIDS
Assoc.  Britain: send #8.00 to Reed Consumer Books, Dept. SP, First 
Floor,
FREEPOST, Michelin House, 81 Fulham Road, London SW3 6YZ.  Accept
Access/American Express/Barleycard/ Diners Club/Visa. Australia: $12 
plus $4
postage, send to ME/CFS Society Victoria Inc., 23 Livingstone Close, 
Burwood,
Victoria, 3125 Australia.

"Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome"
by Katrina Berne, Ph.D.; 1992; 320 pages; $14 from the CFIDS Assoc.

"Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay Goldstein, 
M.D.
259 pages. 27 color plates. $49.00.  Available from the CFIDS Assoc.

[The books above can be purchased from the CFIDS Association of America, 
Inc.,
P.O. 220398, Charlotte, NC 28222-0398, USA.]

"Chronic Fatigue Syndrome: A Pamphlet for Physicians", publication # 92-
484,
by the staff of NIH; May 1992; 15 pages; free of charge.  For copies, 
contact
Office of Communications, N.I.A.I.D., Building 31 Room 7A32, 9000 
Rockville
Pike, Bethesda, MD 20892, tel. 1-202-496-5717.  [Note: the text of this
pamphlet is available as an electronic file, on the Albany Listserv as
filename CFS NIH-DOC and on various BBSs as CFS-NIH.DOC; see the CFS 
Network
Help file described in question 5.04.]

"The Clinical and Scientific Basis of Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome" edited by Dr. Byron Hyde MD, 75 articles by 80
researchers; 1992; 750 pp.; $140.00 Canadian or US, which includes 
postage and
handling,  Canadian orders are not subject to GST; $85 for patients, or
contact Foundation for commission policy; VISA, MasterCard or American
Express, include signature, card number and expiration date; order via
telephone 1-613-728-9643 or fax 1-613-729-0825.   Make checks or bank 
drafts
payable to Nightingale Research Foundation, 383 Danforth Avenue, Ottawa,
Ontario K2A 0E1, CANADA.

"Solving the Puzzle of Chronic Fatigue Syndrome" by Michael Rosenbaum, 
M.D.
and Murray Susser, M.D.  Life Sciences Press, P.O. Box 1174, Tacoma, WA 
98401,
USA.

------------------------------



The most widely read CFS journal in the world is the CFIDS Chronicle,
available for $30 yearly from the CFIDS Association of America, Inc., 
P.O.
220398, Charlotte, NC 28222-0398, USA.

Each national organization also has its own publication (see question 
5.05)
most of which are very informative.

The new medical periodical _Journal_of_Chronic_Fatigue_Syndrome_ is now
available.  One year for individuals is $36, for institutions $60, 
libraries
$75.  In Canada add 30% plus 7% GST.  Other non-USA add 40%.  Send to 
Haworth
Press Inc., 10 Alice St., Binghamton, NY 13904-7981, USA.

There is also the Update (quarterly) from the Massachusetts CFIDS 
Assoc., 808
Main St., Waltham, MA 02154, USA. $20/year.

------------------------------


There is a patients discussion group, available at CFS-L@LIST.NIH.GOV or 
as
newsgroup alt.med.cfs.  There is also the CFS-NEWS electronic 
newsletter, the
CFS Newswire service, Catharsis magazine, and many helpful articles and 
other
documents available on-line through e-mail.  An Internet discussion 
group for
health professionals is being developed.

All of these are described in the CFS Network Help FAQ.  This FAQ will 
be
posted regularly to the alt.med.cfs newsgroup.  It is also available via
e-mail by sending the command GET CFS NET-HELP as a message to the 
address
LISTSERV@SJUVM.STJOHNS.EDU.

For advice on how to access Internet and Usenet, see the CFS/ME 
Electronic
Resources guide described in the next question.

------------------------------

                networks?

There are CFS discussion groups and information files available on 
various
BBSs, Free-Nets, and on the major commercial networks such as GEnie, 
Prodigy,
Compuserve and America Online.  To get advice on where to find these
resources, and on how to get generally plugged in to the world of CFS 
computer
networking, you should get the free pamphlet "CFS/ME Electronic 
Resources"
which is available in print and on-line.

For a printed copy, please send a stamped, self-addressed legal-sized 
envelope
to the following address in the USA:

  CFS/ME Computer Networking Project
  P.O. Box 11347
  Washington, DC 20008-0547

Canadians should send to:

  CFS/ME Computer Networking Project
  3332 McCarthy Road
  P.O. Box 37045
  Ottawa, Ontario K1V 0W0

From outside of the USA or Canada, please send to either address and 
include
an International Reply Coupon to cover return postage.  Printing the 
guide
does cost some money, and the Project asks that donations of any size be 
sent
in so that this work may continue.

An electronic copy of this guide will be posted regularly to the 
newsgroup
alt.med.cfs with the subject "FAQ: CFS Electronic Resources".  To get a 
copy
via e-mail, send the command GET CFS-NET TXT to the address
LISTSERV@SJUVM.STJOHNS.EDU.  The guide is also available for download 
from the
Project ENABLE BBS in West Virginia, tel. 1-304-759-0727, file area 23,
filename CFS-NET.TXT.

Back to the top
------------------------------


       === USA ===

 CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398
   tel. 800-442-3437 or 1-704-362-2343, fax 1-704-365-9755. dues $30/yr
 CFIDS Foundation, 965 Mission St., Suite 425, San Francisco, CA 94103
   info: 1-415-882-9986 from 1pm-3pm Pacific, fax: 1-415-882-9758
   publication "CFIDS Treatment News" 2/yr for any donation (tax ded.)
 RESCIND, 9812 Falls Road, Suite 114-270, Potomac, MD 20854
   fax: (after 6pm ET) 1-301-983-5644.  Internet: MAY12@American.edu
 National CFS & Fibromyalgia Association, 3521 Broadway / Suite 222
   Kansas City, MO 64111, tel. 1-816-931-4777, dues $15/yr
 Fibromyalgia Network, 5700 Stockdale Hwy, Suite 100 Bakersfield, CA 
93309
   info: 1-805-631-1950 from 10am-2pm Pacific, dues $15 USA, $17 Canada
 Human Ecology Action League, P.O. Box 49126, Atlanta, GA 30359
   tel. 1-404-248-1898, publishes The Human Ecologist (quarterly)
 National Center for Environmental Health Strategies, 1100 Rural Avenue
   Voorhees, NJ 08043, tel. 1-609-429-5358, dues $15
 American Academy of Environmental Medicine, PO Box 16106 Denver, CO 
80216
   tel. 1-303-622-9755
 Chemical Injury Information Network, PO Box 301, White Sulphur Springs, 
MT
   59645, contact: Cynthia Wilson, tel. 1-406-547-2255
 National Foundation of Chemical Hypersensitivities and Allergies, PO 
Box
   222, Ophelia, VA 22530, tel. 1-804-453-7538

       === CANADA ===

 M.E. Association, 246 Queen Street, Suite 400, Ottawa, Ontario K1P 5E4

_
                                                                                                             

   tel. 1-613-563-1565, fax: 1-613-567-0614.  Dues $35
 Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario
   K2A 0E1, tel. 1-613-728-9643, fax: 1-613-729-0825.  Dues $35
 National  ME/FM Action Network, 3836 Carling Ave., Hwy 17B, Nepean, ON
   K2H 7V2.  Dues $20.

       === UK ===

 Myalgic Encephalomyelitis Association, Box  8, Stanford-le-Hope, Essex
   SS17 8EX, tel. 44-0375-642466  advice line, 1-4pm: 44-0375-361013
   fax: 44-0375-360256.  Dues 12 pounds
 Action for M.E., P.O Box 1302, Wells, Somerset BA5 2WE, dues 12.50 
pounds

       === AUSTRALIA ===

 ME/CFS Society of New South Wales, PO Box 449, Crows Nest, NSW 2065
   tel. 61-2-439-6026  fax: 906-7892.  dues $25
 ME/CFS Society of Victoria, 23 Livingstone Close, Burwood, Victoria 
3125
   tel. 61-3-888-8991
 ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South
   Australia 5001.  tel. 61-8-373-2110
 ME Syndrome Society of Queensland, PO Box 12. Oxenford, Queensland 4210
   tel. 61-75-73-2772
 CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth
   Western Australia 6060. tel. 61-09-483-6667

       === NEW ZEALAND ===

 A.N.Z.M.E. Society, PO Box 35-429, Browns Bay, Auckland 10

       === NETHERLANDS ===

ME Fonds c/o Hanneke Los, Pres. Kennedylaan 745, 1079 MR Amsterdam
 Tel: 31 020 6445566  Fax: 31 020 6445440  Email: mef@xs4all.nl
ME Lobby c/o Marc Fluks, de Bosch Kemperpad 136, 1054 PM Amsterdam
 Tel: 31 020 6189095 Email: melobby@dds.nl
ME Stichting, Robert Scottsstraat 4, 1056 AX Amsterdam

       === BELGIUM ===

Ms. Alice Vertomme, Dorp 7, 3221 Nieuw Rode, Tel: 32 16 570983

       === DENMARK ===

 Danish ME/CFS Association, co/ A Midsem, Maglehoj 86, DK-3520 Farum

       === NORWAY ===

 Norges M.E. Forening, Eikveien 96A, 1345 Osteras, tel. & fax: 47-2-
249879
  dues 45 krona

       === GERMANY ===

 Selbsthilfegruppe CFS-Syndrom - Immundysfunktion, c/o Birke Steinitz
   An St. Swidbert 52, D-40489 Duesseldorf. tel: 49-211-404376

       === ITALY ===

 C.F.S. Associazione Italia, Segreteria: Via Moimacco 20, 33100, Udine

Back to the top
------------------------------


------------------------------


Medical research and acceptance of the illness will develop only if our
national support organizations which promote them are strong.  Be sure 
to
support your national groups by, at the least, contributing annual dues.  
And
when your national group calls for letters and phone calls to be sent to
public officials and media, please get your family and friends to assist 
you
in responding to those requests.  We may be able to make greater 
achievements
if we act in unison.

In the USA, the largest source of research money comes from government
allocations.  Therefore, contacting your Congressman about the 
importance of
CFS/CFIDS research is very important.

------------------------------


May 12 has been chosen by many national groups as International 
Awareness Day
for chronic fatigue syndrome.  May 12 is the birthday of Florence 
Nightingale,
who had an undiagnosed, debilitating disease for many decades.  Despite 
her
constraints, Nightingale was able to found the International Red Cross.

The concept of May 12 as International Awareness Day was developed by 
Tom
Hennessy.  He has now founded the RESCIND organization (Repeal Existing
Stereotypes about Chronic Immunologic and Neurological Disorders) which
promotes solutions for CFS, fibromyalgia, multiple chemical 
sensitivities, and
Gulf War Syndrome.  RESCIND can be contacted at 9812 Falls Road, Suite
114-270, Potomac, MD 20854, USA, fax: (after 6pm ET) 1-301-983-5644, 
Internet:
MAY12@American.edu.

Back to the top
------------------------------


------------------------------


Usenet:  posted regularly to newsgroup alt.med.cfs, with subject FAQ: 
CFS FAQ
E-mail:  send the command GET CFS FAQ as a message to
         LISTSERV@SJUVM.STJOHNS.EDU.  You can get automatic updates of 
this
         FAQ by sending the commmand AFD ADD CFS FAQ CFS-FILE as an e-
mail
         message to LISTSERV@SJUVM.STJOHNS.EDU.
Web:     http://metro.turnpike.net/C/cfs-news/faq.html
ftp:     rtfm.mit.edu at directory and filename
faq
gopher:  sjuvm.stjohns.edu, CFS menu, CFS-FILE, filename CFS FAQ

------------------------------


There are a series of medical articles regarding the diagnosis and 
treatment
of CFS which are available from the SJUVM Listserv on the Internet.  
Below are
shown article titles and authors, with their filenames.  Instructions on 
how
to retrieve the files are described after this listing of articles.

 FILENAME               Title of article
 --------           ---------------------------------------------

CFSLAPP1 TXT   |    Chronic fatigue syndrome is a real disease.
                        Lapp, CW.  North Carolina Family Physician,
                        Winter 1992.


   Contents:  The CFIDS Chronicle Physicians Forum / CFIDS: The
              Diagnosis of a Distinct Illness.  September 1992.

                 Section I:  Descriptive Articles
CFIDS923 BELL      |    CFS: Recent Advances in Diagnosis and Treatment.
                        Bell DS.
CFIDS923 CALABRE#  |    Chronic Fatigue Syndrome. Calabrese L, Danoa T,
                        Camara E, Wilke W.
CFIDS923 CHENEY#   |    The Diagnosis of CFS: An Assertive Approach.
                        Cheney PR, Lapp CW.
CFIDS923 GOLDSTEI  |    The Diagnosis of CFS as a Limbic Encephalopathy.
                        Goldstein JA.
CFIDS923 HICKIE#   |    Diagnosing CFS: Principles and Pitfalls for the
Patient,
                        Physician, and Researcher.  Hickie I, Wakefield 
D.
CFIDS923 KLIMAS    |    Diagnosing CFIDS: An Immunologist's Approach.
                        Klimas NG.

CFIDS923 JONES#    | Section II:  Clinical Comments;
                        by Jones JF, Komaroff AL, Natelson BH, Peterson 
DL.

                 Section III: Research Articles
CFIDS923 CDC       |    CFS Research at the Centers for Disease Control.
                        CDC CFS Research Group.
CFIDS923 YUNUS     |    CFS and Fibromyalgia Syndrome: Similarities and
                        Differences; Yunus MB
CFIDS923 SANDMAN#  |    Protocol for Cognitive Assessment of CFIDS.
                        Sandman CA, Moore S.
CFIDS923 IGER      |    The MMPI-2 CFS Profile.  Iger LM.
CFIDS923 HERST     |    2'-5' Oligo-Adenylate Synthetase and RNase-L:
                        Key Enzymes in the Antiviral Defense
                        Mechanism.  Herst CV.

              - - - - - - - - - -

The above articles and other files of interest are available from the
SJUVM LISTSERV at St. John's University.  To use the SJUVM file server,
send commands (described as follows) by e-mail to 
LISTSERV@SJUVM.STJOHNS.EDU.

To get a list of current files available, send the command GET CFS-FILE
FILELIST to the LISTSERV address above.  To retrieve specific files, 
note
the filenames on the FILELIST and then send the command GET
 to the LISTSERV address (each file has a two-part name).

There are other Listservs which also have files of interest.  Send the 
command
GET CFS-D FILELIST to the address LISTSERV%ALBNYDH2@ALBANY.EDU to obtain 
a
list of files available at that facility.  For information on 
fibromyalgia,
send GET FIBROM-L FILELIST to LISTSERV@VMD.CSO.UIUC.EDU.

Back to the top
------------------------------


Below are shown common medical abbreviations that CFS people often come
across.  Following these are a list of abbreviations often found in 
computer
network discussions.

           Medical abbreviations

BEAM  - A kind of brain scan

CBC  - complete blood count

CD4, CD8 etc.  -- immune cells

CDC  -- Centers for Disease Control and Prevention (USA agency),
        responsible for estimating prevalence rates and making
        epidemiological studies

CEBV  -- chronic Epstein-Barr syndrome.  CFS was once thought to be 
this.

CFS  -- chronic fatigue syndrome

CFIDS  -- chronic fatigue and immune dysfunction syndrome, a name for 
CFS
          often used in the USA.

CNS  -- central nervous system

COQ10  -- co-enzyme Q10, a naturally occuring substance which some 
patients
          find helpful; available without prescription

DHEA  -- dehydroepiandrosterone, a steroid hormone that some patients
         find helpful although this medication has risks

DHHS  -- Dept. of Health and Human Services (USA agency)

EBV  -- Epstein-Barr Virus.  See question 2.19 above.

EI -- See MCS

EPD  -- enzyme potentiated desensitization; a treatment

FDA  -- Food and Drug Adminstration; a USA agency which regulates drug
        approvals, nutritional supplements, and food quality and 
labeling

FMS -- fibromyalgia syndrome; quite similar to CFS, many believe it is 
the
       same illness, although CFS researcher Dr. Paul Cheney says that 
FMS
       patients respond well to programs of graduated exercise, while 
CFS
       will suffer a relapse if they follow the same regimen.  There's a
       separate network discussion group for this,
       FIBROM-L@VMD.CSO.UIUC.EDU or newsgroup alt.med.fibromyalgia.

GWS  -- (a.k.a. PGS) = Gulf War Syndrome -- condition noted by USA and
        other militaty veterans who fought in the 1991 Persian Gulf war.
        This hasn't been studied enough to clarify that it's one 
syndrome.
        Many of the patients, though, exhibit symtpoms indistinguishable
        from MCS, and MCS treatments have been very successful with 
these
        patients (as reported at NIH's workshop on this topic, April 
'94).

HHV6  -- human herpes virus 6; might be involved in several conditions,
         including CFS.

HMO  -- health maintenance organization (USA); a pre-paid plan which
        provides comprehensive medical services

HPA  -- hypothalamic-pituitary-adrenal; this axis controls stress 
response
        and many other bodily functions; damage to this has been 
implicated
        as a possible cause of CFS.

IVIG  -- intravenous gamma globulin; a treatment that some find helpful

MAOI  -- monoamine oxidase inhibitors; a class of drugs that some find
         helpful; several risks

MCS  -- multiple chemical sensitivities, also known as EI ( = 
environmental
        illness).  Very similar to CFS except that in MCS, chemical & 
fume
        exposures are a clear trigger that worsen symptoms.  Often
        discussed on the "immune" discussion group (to subscribe, 
contact
        immune-request@weber.ucsd.edu

ME  -- myalgic encephalomyelitis; the name for CFS used most commonly
       outside of the USA.

MRI  -- magnetic resonance imaging; a kind of brain scan

NIH  -- National Institutes of Health (USA agency); largest medical
        research institution in the world

NK  -- natural killer cell, a type of immune cell

NSAID  -- non-steroidal anti-inflammatory drugs; examples: naproxen,
          ibuprofen; used for pain

PCR  -- polymerase chain reaction; a DNA technique used for identifying
        viruses and other life forms

PET  -- a kind of brain scan

PHS  -- Public Health Service (USA agency); under the DHHS, the PHS
        includes NIH, CDC, and SSA

PNI  -- psychoneuroimmunology; new field that studies relations between
        emotions and the immune system

PWC  -- person with CFS

PGS  -- Persian Gulf Syndrome; see GWS.

PVFS  -- post-viral fatigue syndrome; term used in Britain, associated 
with
         CFS/ME

SoPWC  -- spouse of PWC; significant other of a PWC

SPECT  -- a kind of brain scan

SSA  -- Social Security Adminstration (USA agency), responsible for
        retirement and disability benefits

SSDI  -- disability benefit program form the SSA (USA)

SSRI  -- selective serotonin re-uptake inhibitors; examples: Zoloft, 
Paxil,
         Prozac; often used to address fatigue, cognitive dysfunction 
and
         depression

T4, T8 etc.  -- kinds of immune cells

TCA  -- tricyclic anti-depressants; examples: doxepin and amitriptyline;
        often used for sleep disorder, and muscle and joint pain;


           Computer Land abbreviations

brb  -- be right back (an IRC term)

btw  -- by the way

FAQ  - frequently asked question; or, a document that answers frequently
       asked questions

FTP  -- file transfer protocol; a nifty Internet utility for storing/
        retrieving files

FWIW  -- for whatever it's worth

HTTP  -- hypertext protocol; a nifty Internet utility which can link
         multiple resources

IMHO  -- in my humble opinion

IRC  -- Internet Relay Chat.  Live conferences take place on this 
service.
        For info, send GET CFS IRC as e-mail to 
LISTSERV@SJUVM.STJOHNS.EDU.

LOL  -- lots of laughter

OIC  -- Oh, I see!

ROTFL  -- roll-on-the-floor laughing

TTYL  -- talk to you later

URL  -- universal resource locator; an Internet term that identifies
        specificl locations for ftp, http, etc. resources

w.r.t.  -- with respect to

:-)  -- a "smilie", meaning "meant in jest"; (look at it sideways to see
        the smilie face)

Back to the top
------------------------------


This FAQ is not comprehensive, and there are (or will be) separate FAQs 
that
describe treatments, electronic resources, and other specialized topics.
These related FAQs can likely be found near to where you have found this 
one.
Or consult the CFS Index of FAQs which can be obtained in several ways,
including sending the command GET CFS INDEX as an e-mail message to 
address
LISTSERV@SJUVM.STJOHNS.EDU.

------------------------------


A new question on EBV has been added (question 2.19).  Some new
abbreviations have been added to Appendix 3 above.

------------------------------


This is a document whose development is in progress.  It is being 
developed by
the CFS Internet Group (that is, the participants of the Internet 
mailing list
CFS-L and the Usenet newsgroup alt.med.cfs).  For further information 
about
the group and this project, send electronic mail to
CFS-L-REQUEST@LIST.NIH.GOV.  To participate in developing this document, 
post
messages to the FAQ: topic of the CFS-L mailing list or the alt.med.cfs
newsgroup (see question 5.04).

------------------------------


The initial draft was written by Roger Burns.  Some phrases were 
borrowed from
"A Guide to CFIDS" by the CFIDS Association.  Contributors include 
Darryl
Anderson, Sara Brenner, Susan Chapin, Camilla Cracchiolo, Jim Dalton, 
Nancy
Evans, Elizabeth Heyman, Jan Horton, Ruth Hyman, Marjorie Panditji, 
Dorothy
Roberts, Sandy Shaw, Al Shinn and Malcolm Watts.  All errors belong to 
the
editor, Roger Burns -- but read the disclaimer in subject 0.02 above.

Back to the top




                                                       
