Path: senator-bedfellow.mit.edu!faqserv
From: cfs-news@cais.cais.com (Roger Burns)
Newsgroups: alt.med.cfs,alt.answers,news.answers
Subject: FAQ: CFS FAQ
Supersedes: <medicine/chronic-fatigue-syndrome/cfs-faq_888928386@rtfm.mit.edu>
Followup-To: alt.med.cfs
Date: 10 Mar 1998 13:06:28 GMT
Organization: none
Lines: 1741
Approved: news-answers-request@MIT.EDU
Expires: 31 Mar 1998 13:05:39 GMT
Message-ID: <medicine/chronic-fatigue-syndrome/cfs-faq_889535139@rtfm.mit.edu>
Reply-To: CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU
NNTP-Posting-Host: penguin-lust.mit.edu
Summary: This posting answers general questions about the illness known
         as chronic fatigue syndrome (CFS), also known as myalgic
         encephalomyelitis (M.E.) and chronic fatigue and immune
         dysfunction syndrome (CFIDS).
X-Last-Updated: 1998/01/28
Originator: faqserv@penguin-lust.MIT.EDU
Xref: senator-bedfellow.mit.edu alt.med.cfs:74869 alt.answers:32692 news.answers:125180

Archive-name: medicine/chronic-fatigue-syndrome/cfs-faq
E-mail: send GET CFS FAQ to LISTSERV@MAELSTROM.STJOHNS.EDU
Web: http://www.cais.net/cfs-news/faq.htm
Posting-Frequency: weekly
Version: 1.37 (last revised 1997/08/02)

     This document is quite long (about 1600 lines) and you may wish
     to save it as a file or print it out. It will be easiest to refer
     to this document as a web page, at
     http://www.cais.net/cfs-news/faq.htm. To read how to obtain the
     latest version of this document, and for e-mail readers who
     cannot receive it as one large file, see Section 0.03 below.

                                The CFS FAQ

                         Frequently Asked Questions

                              C O N T E N T S

     Part 0: Administrivia
     0.00 Copyright
     0.01 Introduction
     0.02 Disclaimer
     0.03 Where to get the current version of this FAQ

     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. Articles on-line
     A2. Common abbreviations
     A3. Further information
     A4. Changes to this edition
     A5. Development of this FAQ
     A6. Credits

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

     Subject: Part 0: Administrivia

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

     Subject: 0.00 Copyright

     The CFS FAQ is copyright (c) 1997 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@MAELSTROM.STJOHNS.EDU, the FAQ's version
     number and date, and at least two locations from which a current
     version of this FAQ may be retrieved (see Section 0.03). For any
     other use, permission must be obtained in writing from Roger
     Burns (CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU).

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

     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.

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

     Subject: 0.03 Where to get the current version of this FAQ

     Usenet:  posted regularly to newsgroup alt.med.cfs, with subject FAQ=
: CFS FAQ
     E-mail:  create an e-mail message whose text reads GET CFS FAQ and s=
end to
              LISTSERV@MAELSTROM.STJOHNS.EDU.  For those who cannot recei=
ve
              such a large file (about 75 Kbytes) as a single e-mail, the=
n send
              a message that says GET CFS FAQ SPLIT=3D40K as e-mail to th=
at same
              address.
     Web:     http://www.cais.net/cfs-news/faq.htm
     ftp:     rtfm.mit.edu at directory and filename
              /pub/usenet/news.answers/medicine/chronic-fatigue-syndrome/=
cfs-faq

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

     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.

     Suhadolnik RJ, Peterson DL, O'Brien K, Cheney PR, et al.
     Biochemical Evidence for a Novel Low Molecular Weight
     2-5A-Dependent RNase L in Chronic Fatigue Syndrome. Journal of
     Interferon and Cytokine Research, July 1997, 17:377-385.

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

     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 is discussion going on now within the
     patient community about changing the name of the illness. For
     further information about this, see the web page at
     http://www.cais.net/cfs-news/name.htm, or send an e-mail message
     which says GET CFS NAME to address
     LISTSERV@MAELSTROM.STJOHNS.EDU, or see the Winter 1997 CFIDS
     Chronicle published by the CFIDS Association of America (see
     question 5.06 below).

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

     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@MAELSTROM.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

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

     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 STJOHNS Listserv on
     the Internet. See Appendix 2 at the end of this document.

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

     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. Prof. Robert Suhadolnik (Temple U.,
     Philadelphia) is exploring a possible bio-marker for CFS found in
     patients' blood. Drs. Hugh Dunstan and Timothy Roberts (U.
     Newcastle, Australia) are researching a possible biological
     marker found in urine. 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). Drs. Andrew
     Lloyd, Ian Hickie, Denis Wakefield and Andrew Wilson (Sydney,
     Australia) aremaking broad investigations into many aspect of
     CFS. 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. Paul Cheney, Charles Lapp and
     Jay Goldstein are studying various treatments. Drs. Simon
     Wessely, Michael Sharpe and other British psychiatrists are
     exploring the value of cognitive behavior therapy for CFS. 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.

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

     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). See also the Children and CFS web site at
     http://www.bluecrab.org/health/sickids/sickids.htm.

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

     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.

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

     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 1.

     There is a patients discussion group for fibromyalgia on Internet
     and Usenet, and there are web pages and information files
     available. To find fibromyalgia information on the web, you can
     begin by exploring the links at
     http://www.cais.net/cfs-news/fibro.htm. The discussion group is
     available on Usenet as newsgroup alt.med.fibromyalgia. It can be
     followed as a mailing list by sending the command SUB FIBROM-L
     YourFirstName YourLastName as an e-mail message to the address
     LISTSERV@MITVMA.MIT.EDU. There are fibromyalgia FAQs for
     patients, for doctors, and a help file about pain, all available
     by e-mail. To obtain them, create an e-mail message which says

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

     and send to address LISTSERV@MITVMA.MIT.EDU.

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

     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.

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

     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.

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

     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. See the CFS
     Social Security web page. You can get those same files by e-mail
     from the STJOHNS Listserv, specifically files named CFIDS941
     RYAN, CFS SOCSEC1, CFS SOCSEC2, CFS SOCSEC5 and CFS SOCSEC6. See
     Appendix 1 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.

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

     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@MAELSTROM.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.]

     "From Fatigued to Fantastic: A Manual for Moving Beyond Chronic
     Fatigue and Fibromyalgia" by Jacob Teitelbaum, MD; 1995; 190 pp.;
     $22.95 includes shipping; make checks payable to Jacob Teitelbaum
     MD, send to him by postal mail at 139 Old Solomon Island Road,
     Annapolis, Maryland 21401 USA, or phone 1-800-333-5287 or fax
     1-410-224-4926, for volume discounts phone 1-410-224-2222.

     "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 $35 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.

     Journal of Chronic Fatigue_Syndrome. This is a quarterly medical
     journal. One year for individuals is $36, for institutions $60,
     libraries $150. 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. Other contact info: tel. (USA) 1-800-HAWORTH;
     elsewhere 1-607-772-5857; fax 1-607-771-0012; e-mail:
     customer@haworth.com

     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@MAELSTROM.STJOHNS.EDU 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@MAELSTROM.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@MAELSTROM.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.

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

     Subject: 5.06 What national organizations are there?

       =3D=3D=3D USA =3D=3D=3D

 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
   e-mail:  cfids@cfids.org, dues $35/yr
 RESCIND, 9812 Falls Road, Suite 114-270, Potomac, MD 20854
   fax: (after 6pm ET) 1-301-983-5644, e-mail RESCINDinc@aol.com.
 Medical Professionals With CFIDS, c/o Gail Dahlen, 50 Cecil Ave.,
   Indianapolis, IN 46219, e-mail LClovis428@aol.com
 National CFS & Fibromyalgia Association,  P.O. Box 18426
   Kansas City, MO 64133, tel. 1-816-313-2000, dues $15/yr
 Fibromyalgia Network, 5700 Stockdale Hwy, Suite 100 Bakersfield, CA 9330=
9
   info: 1-805-631-1950 from 10am-2pm Pacific, dues $15 USA, $17 Canada
 National Gulf War Resource Center, 3100 Main St. Suite 207, Kansas City,=
 MO
   64111, tel 1-816-960-0991, fax 1-816-960-0993, e-mail ngwrc@gulfweb.or=
g
 MCS Referral and Resources, 508 Westgate Road, Baltimore, MD 21229-2343
   tel. 1-410-362-6400, fax: 1-410-448-3317, e-mail: donnaya@rtk.net
 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 8021=
6
   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

       =3D=3D=3D CANADA =3D=3D=3D

 M.E. Association, 246 Queen Street, Suite 400, Ottawa, Ontario K1P 5E4
   tel. 1-613-563-1565, fax: 1-613-567-0614, e-mail info@mecan.ca  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.

       =3D=3D=3D UK =3D=3D=3D

 M.E. 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 pound=
s
   tel. 01749 670779, fax 01749 672561, e-mail: info@afme.org.uk
 Association of Youth with M.E (AYME), 5 Medland, Woughton Park, Milton
   Keynes MK6 3BH, tel/fax: 01908 691635, e-mail: ayme@btinternet.com,
   free membership to under 25's in the UK, bi-monthly newsletter and fre=
e
   pen-pal service

       =3D=3D=3D AUSTRALIA =3D=3D=3D

 ME/CFS Society of New South Wales, PO Box 449, Crows Nest, NSW 2065
   tel. 61-2-439-6026  fax: 906-7892  e-mail: mesoc@zip.com.au  dues $25
 ME/CFS Society of Victoria, 23 Livingstone Close, Burwood, Victoria 3125
   tel. 61-3-888-8798, e-mail cfs_society@3dis.com.au
 ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South
   Australia 5001.  tel. 61-8-373-2110
 ME/CFS Syndrome Society of Queensland, PO Box 938, Fortitude Valley,
   Qld 4006, tel. 61-7-3832-9744  e-mail: qporter@gil.com.au
 ACT ME/CFS Society, PO Box 717, Mawson, ACT 2607, tel. 61-6-290-1984,
   fax 286-4475
 CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth
   Western Australia 6060. tel. 61-09-483-6667

       =3D=3D=3D NEW ZEALAND =3D=3D=3D

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

       =3D=3D=3D NETHERLANDS =3D=3D=3D

 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, Fax: 31 020-6188=
578
   Tel: 31 (0)20-6895162 (maandag, woensdag, vrijdag 10-12 uur)

       =3D=3D=3D BELGIUM =3D=3D=3D

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

       =3D=3D=3D DENMARK =3D=3D=3D

 Danish ME/CFS Association, ME/CFS Foreningen, Raadhustorvet 1
    2.sal DK-3520 Farum.  Tel: 45 4495 9700   Mon, Wed, Thu 10:00-14:00
    and Thursday also 16:00-18:00.  FAX: 45 4495 9774

       =3D=3D=3D NORWAY =3D=3D=3D

 Norges M.E. Forening, Eikveien 96A, 1345 Osteras, tel. & fax: 47-2-24987=
9
  dues 45 krona

       =3D=3D=3D SWEDEN =3D=3D=3D

 Riksf=F6reningen f=F6r ME-patienter (Swedish Assn of ME patients), Box 1=
326
  251 13 HELSINGBORG.  tel: 46 42-18-22-67.  Quarterly newsletter.
  annual dues: 150 kronor

       =3D=3D=3D GERMANY =3D=3D=3D

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

       =3D=3D=3D ITALY =3D=3D=3D

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

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

     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: RESCINDinc@aol.com.

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

     Subject: Appendices

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

     Subject: A1. Articles on-line

     There are a series of medical articles regarding the diagnosis
     and treatment of CFS which are available from the STJOHNS
     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 STJOHNS LISTSERV at St. John's University. To use the STJOHNS
     file server, send commands (described as follows) by e-mail to
     LISTSERV@MAELSTROM.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@MITVMA.MIT.EDU.

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

     Subject: A2. 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.

     CBT - cognitive behavior therapy

     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@MITVMA.MIT.EDU or newsgroup alt.med.fibromyalgia.

     GWS -- (a.k.a. PGS) =3D 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 ( =3D
     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 from 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@MAELSTROM.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)

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

     Subject: A3. 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@MAELSTROM.STJOHNS.EDU.

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

     Subject: A4. Changes to this edition

     Information about Suhadolnik's research on a bio-marker has been
     added to Section 1.03, and Section 2.05 now includes references
     to Suhadolnik, the Sydney, Australia research team, and CBT work
     being done by Wessely, Sharpe, et al. "CBT has been added to the
     abbreviations in Appendix 2.

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

     Subject: A5. 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@MAELSTROM.STJOHNS.EDU.

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

     Subject: A6. Credits

     The initial draft was written by Roger Burns. Some phrases were
     borrowed from "Understanding CFIDS" by the CFIDS Association of
     America. 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.


     =3D=3D=3D=3D=3D=3D=3D=3D From: CFS-L@MAELSTROM.STJOHNS.EDU =3D=3D=3D=
=3D=3D=3D=3D=3D

