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Version: 1.27 (last revised 1996/01/08)


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                                  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
   
   
   ------------------------------
   
   Subject: Part 0: Administrivia
   
   ------------------------------
   
   Subject: 0.00 Copyright
   
   The CFS FAQ is copyright (c) 1996 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).
   
   ------------------------------
   
   Subject: 0.01 Introduction
   
   This document answers frequently asked questions (f.a.q.) about
   chronic fatigue syndrome (CFS).
   
   ------------------------------
   
   Subject: 0.02 Disclaimer
   
   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
   ------------------------------
   
   Subject: Part 1: General
   
   ------------------------------
   
   Subject: 1.01 What is CFS?
   
   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.
   
   ------------------------------
   
   Subject: 1.02 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.
   
   ------------------------------
   
   Subject: 1.03 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.
   
   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).
   
   Bou-Holaigah, I; Rowe, P; Kan, J; Calkins, H. "The Relationship
   Between Neurally Mediated Hypotension and the Chronic Fatigue
   Syndrome". JAMA, Sept. 27, 1995 274:12:961-7.
   
   ------------------------------
   
   Subject: 1.04 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.
   
   ------------------------------
   
   Subject: 1.05 Shouldn't this illness have a better name?
   
   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
   
   ------------------------------
   
   Subject: 2.01 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 (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 question 2.036 below.) 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.
   
   ------------------------------
   
   Subject: 2.02 What symptoms are used to diagnose CFS?
   
   ------------------------------
   
   Subject: 2.021 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 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.
   
   ------------------------------
   
   Subject: 2.022 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 2.036 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
   ------------------------------
   
   Subject: 2.03 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.
   
   ------------------------------
   
   Subject: 2.031 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 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.
   
   ------------------------------
   
   Subject: 2.032 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.
   
   ------------------------------
   
   Subject: 2.033 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.
   
   ------------------------------
   
   Subject: 2.034 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.
   
   ------------------------------
   
   Subject: 2.035 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.
   
   ------------------------------
   
   Subject: 2.036 Article references
   
   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
   ------------------------------
   
   Subject: 2.04 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 (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".
   
   ------------------------------
   
   Subject: 2.05 What research is currently going on?
   
   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 and Jay
   Goldstein 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.
   
   ------------------------------
   
   Subject: 2.06 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.
   
   ------------------------------
   
   Subject: 2.07 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.
   
   ------------------------------
   
   Subject: 2.08 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.
   
   ------------------------------
   
   Subject: 2.09 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.
   
   Back to the top
   ------------------------------
   
   Subject: 2.10 Do people die from CFS?
   
   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?
   
   ------------------------------
   
   Subject: 2.11 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.
   
   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
   about how to get this article's text by e-mail.)
   
   ------------------------------
   
   Subject: 2.12 Is CFS related to AIDS?
   
   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.
   
   ------------------------------
   
   Subject: 2.13 Does CFS increase the likelihood of cancer? 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.
   
   ------------------------------
   
   Subject: 2.14 How does CFS affect children?
   
   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).
   
   ------------------------------
   
   Subject: 2.15 How does CFS relate to pregnancy?
   
   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
   ------------------------------
   
   Subject: 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.)?
   
   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.
   
   ------------------------------
   
   Subject: 2.17 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 -- see Appendix 2.
   
   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://metro.turnpike.net/C/cfs-news/fibro.html. 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 are
   fibromyalgia FAQs for patients, for doctors, and a help file about
   pain, all available by e-mail. 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.
   
   ------------------------------
   
   Subject: 2.18 How does CFS relate to neurally mediated hypotension?
   
   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
   (NHM). 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
   citations for these studies are listed at the end of question 1.03
   above. To obtain a special edition of the CFS-NEWS electronic
   newsletter (edition #45) which describes this research, send the
   command GET CFS-NEWS 045 as an e-mail message to the address
   LISTSERV@HEALTH.STATE.NY.US .
   
   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.
   
   ------------------------------
   
   Subject: 2.19 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.
   
   Back to the top
   ------------------------------
   
   Subject: Part 3: Life problems created by CFS
   
   ------------------------------
   
   Subject: 3.01 How does one live with CFS?
   
   - 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
     
   ------------------------------
   
   Subject: 3.02 How do I find support groups?
   
   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
   ------------------------------
   
   Subject: Part 4: Income security: Job and/or disability benefits
   
   ------------------------------
   
   Subject: 4.01 How do I handle problems about my job?
   
   - 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.
   
   ------------------------------
   
   Subject: 4.02 What problems do I face in seeking disability benefits?
   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
   ------------------------------
   
   Subject: Part 5: CFS information resources
   ------------------------------
   
   Subject: 5.01 What other FAQs are available?
   
   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.
   
   ------------------------------
   
   Subject: 5.02 What books are available?
   
   Note the support-oriented books listed under question 3.01 above, and
   the medical articles shown under questions 1.03, 2.02 and 2.036. 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.
   
   ------------------------------
   
   Subject: 5.03 What newsletters and magazines are available?
   
   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
   5.06) which as a rule 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.
   
   ------------------------------
   
   Subject: 5.04 What CFS resources are available on Internet and Usenet?
   
   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. It is 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.
   
   ------------------------------
   
   Subject: 5.05 What CFS resources are available on other electronic
   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
   ------------------------------
   
   Subject: 5.06 What national organizations are there?
   

       === 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
 National CFS & Fibromyalgia Association,  P.O. Box 18426
   Kansas City, MO 64133, tel. 1-816-313-2000, dues $15/yr
 RESCIND, 9812 Falls Road, Suite 114-270, Potomac, MD 20854
   fax: (after 6pm ET) 1-301-983-5644.  Internet: MAY12@American.edu
 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
   ------------------------------
   
   Subject: Part 6: Important information
   
   ------------------------------
   
   Subject: 6.01 What else is important for me to know about CFS?
   
   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.
   
   ------------------------------
   
   Subject: 6.02 What is "May 12 / International Awareness Day"?
   
   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
   ------------------------------
   
   Subject: Appendices
   
   ------------------------------
   
   Subject: A1. Where to get the current version of this FAQ
   

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
         /pub/usenet/news.answers/medicine/chronic-fatigue-syndrome/cfs-faq
gopher:  sjuvm.stjohns.edu, CFS menu, CFS-FILE, filename CFS FAQ

   ------------------------------
   
   Subject: A2. Articles on-line
   
   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. On the web version of this document,
   the filenames below are hotlinked to the full text of each article.
   
   CFSLAPP1 TXT    "Chronic fatigue syndrome is a real disease"
          Charles Lapp. North Carolina Family Physician, Winter 1992.
          
   CFIDS923 BELL    "CFS: Recent Advances in Diagnosis and Treatment"
          by D Bell
          
   CFIDS923 CALABRE#    "Chronic Fatigue Syndrome"
          by L Calabrese, T Danoa, E Camaro, W Wilke; (reprinted from
          American Family Physician)
          
   CFIDS923 CHENEY#   "Diagnosis of CFS: An Assertive Approach"
          by P Cheney, W C Lapp
          
   CFIDS923 GOLDSTEI    "Diagnosis of CFS as Limbic Encephalopathy"
          by J Goldstein
          
   CFIDS923 HICKIE#    "Diagnosing CFS: Principles and Pitfalls for the
          Patient, Physician and Researcher"
          by I Hickie, D Wakefield
          
   CFIDS923 KLIMAS    "Diagnosing CFIDS: An Immunologist's Approach"
          by N Klimas
          
   CFIDS923 JONES#    "Clinical comments"
          by J Jones, A Komaroff, B Natelson, D Peterson
          
   CFIDS923 YUNUS    "CFS and Fibromyalgia Syndrome: Similarities and
          Differences"
          by M Yunus
          
   CFIDS923 SANDMAN#    "Protocol for Cognitive Assessment of CFIDS"
          by C Sandman, S Moore
          
         - - - - - - - - - -
   
   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@HEALTH.STATE.NY.US 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
   ------------------------------
   
   Subject: A3. Common abbreviations
   
   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
   
   DD -- (slang) the "damned disease", i.e. CFS
   
   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
   
   NMH -- neurally mediated hypotension, a blood pressure ailment linked
   to CFS by research in 1995
   
   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;
   
   TTT -- tilt table test; used to diagnose neurally mediated hypotension
   (NMH), a condition that has been linked to CFS
   
  COMPUTER AND OTHER COMMON ABBREVIATIONS
  
   
   
   bbiaf -- be back in a few (an IRC term)
   
   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 transfer protocol; the Internet utility which
   enables the World Wide Web to link multiple resources together
   
   IAIYH -- "It's all in your head"
   
   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
   ------------------------------
   
   Subject: A4. Further information
   
   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.
   
   ------------------------------
   
   Subject: A5. Changes to this edition
   
   References to the Sept. '95 JAMA article on neurally mediated
   hypotension have been added to sections 1.03, 2.032 and 2.18. The web
   version of this FAQ has had more hotlinks added.
   
   ------------------------------
   
   Subject: A6. Development of this FAQ
   
   This is a document whose development is in progress. Please make
   comments to help improve it. Post suggestions to the FAQ: topic of the
   CFS-L mailing list or the alt.med.cfs newsgroup, or send privately to
   the group's moderator at address CFS-L-REQUEST@LIST.NIH.GOV.
   
   ------------------------------
   
   Subject: A7. Credits
   
   The initial draft was written by Roger Burns. Some phrases were
   borrowed from "Understanding 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
   ================= From: CFS-L@LIST.NIH.GOV ========================



