home *** CD-ROM | disk | FTP | other *** search
Text File | 1995-04-11 | 63.7 KB | 1,483 lines |
- Archive-name: medicine/chronic-fatigue-syndrome/cfs-faq
- E-mail: send GET CFS FAQ to LISTSERV@SJUVM.STJOHNS.EDU
- Posting-Frequency: monthly
- Version: 1.1 (last revised 1995/03/11)
-
- In the future we may split this document into several parts, but for now this
- document is quite long (nearly 1500 lines) and you may wish to save it as a
- file or print it out.
-
- The CFS FAQ
-
- C O N T E N T S
- Part 0: Administrivia
- 0.00 Copyright
- 0,01 Introduction
- 0.02 Disclaimer
-
- Part 1: General
- 1.01 What is CFS?
- 1.02 What causes CFS?
- 1.03 Is CFS a "real" disease?
- 1.04 Who gets CFS?
- 1.05 Shouldn't this illness have a better name?
-
- Part 2: Medical issues
- 2.01 How do I find good medical care for CFS?
- 2.02 What symptoms are used to diagnose CFS?
- 2.021 CFS definition
- 2.022 Clinical views
- 2.03 What are the specific treatments available for CFS?
- 2.031 Avoid stress
- 2.032 Medications
- 2.033 Role of exercise
- 2.034 Dietary changes
- 2.035 Secondary problems
- 2.036 Article references
- 2.04 What is the role of stress in CFS?
- 2.05 What research is currently going on?
- 2.06 How does CFS usually begin?
- 2.07 How long can CFS last?
- 2.08 Is CFS contagious?
- 2.09 Is CFS genetic?
- 2.10 Do people die from CFS?
- 2.11 Is CFS related to depression?
- 2.12 Is CFS related to AIDS?
- 2.13 Does CFS increase the likelihood of cancer?
- 2.14 How does CFS affect children?
- 2.15 How does CFS relate to pregnancy?
- 2.16 How does CFS relate to other similar illnesses such as fibromyalgia,
- multiple chemical sensitivities, Gulf War syndrome, neurally mediated
- hypotension, Lyme disease, candida, etc.)?
-
- 2.17 How does CFS relate specifically to fibromyalgia?
- 2.18 How does CFS relate to neurally mediated hypotension?
-
- 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) 1995 by Roger Burns on behalf of the CFS Internet
- Group. Permission is granted to redistribute or quote this document for
- non-commercial purposes provided that you include an attribution to the CFS
- Internet group, the contact address of CFS-L-REQUEST@LIST.NIH.GOV, the FAQ's
- version number and date, and at least two locations from which a current
- version of this FAQ may be retrieved (see Appendix 1). For any other use,
- permission must be obtained in writing from Roger Burns
- <CFS-L-REQUEST@LIST.NIH.GOV>.
-
- ------------------------------
-
- 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: 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 that
- peer-reviewed research which does tend to legitimize this disease.
-
- Emerging illnesses such as CFS typically go through a period of many years
- before they are accepted by the medical community, and during that interim
- time patients who have these new, unproven illnesses are all too often
- dismissed as being "psychiatric cases". This has been the experience with CFS
- as well.
-
- But many top-level researchers are showing that this is a distinct, organic
- illness. This includes research by Anthony Komaroff (Harvard), Jay Levy
- (UCSF), Nancy Klimas (U. Miami), Andrew Lloyd (U. New South Wales), Stephen
- Straus (NIH), and others.
-
- Physicians and scientists may find the following citations of interest:
-
- Levine P; et al. "CFS: Current Concepts" (proceedings of the Oct. 1992 CFS
- medical conference), Vol. 18 Suppl. 1, January 1994, Clinical Infectious
- Diseases.
-
- Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic
- abnormalities in chronic fatigue syndrome". J of Clinical
- Microbiology 28:1403-1410 (June 90) [Study showing that NK
- cells (a kind of immune cell) malfunction in CFS patients; other
- abnormalities]
-
- Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness
- characterized by fatigue, neurologic and immunologic disorders
- and HHV-6 infection". Ann Int Med 116:103-112 (Jan 1992) [Study
- showing many CFS patients have HHV-6 infections]
-
- Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired
- Activation of the Hypothalamic-Pituitary-Adrenal Axis in
- Patients with Chronic Fatigue Syndrome". J of Clinical
- Endocrinology & Metabolism 73:1224-34 (Dec 1991) [shows
- chemical abnormalities in the brains of CFS patients]
-
- Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte
- Phenotype and Function in the Chronic Fatigue Syndrome". J of
- Clinical Immunology 13:30-40 (Jan 93) [Study showing T4 cell
- (a type of immune cell) abnormalities in CFS patients]
-
- Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo;
- "Infection of natural killer cells by human herpesvirus 6".
- Nature 362:458-462 (April 1 1993) [HHV-6 -- previously found in
- CFS patients -- now shown to kill NK cells (a type of immune
- cell) -- a small but important advance in research]
-
- Schwartz R, Komaroff A, Garada B, Gleit M, Doolittle T, Bates D, Vasile R,
- Holman B. "SPECT Imaging of the Brain: Comparison of Findings in Patients
- with Chronic Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar
- Depression" AJR 1994:162:943-951.
-
- Schwartz R, Garada B, Komaroff A, Tice H, Gleit M, Jolesz F, Holman B.
- "Detection of Intercranial Abnormalities in Patients with Chronic Fatigue
- Syndrome: Comparison of MR Imaging and SPECT" AJR 1994:162:935-941.
-
- Rowe, P; Bou-Holaigah, I; Kan, J; Calkins, H;. "Is Neurally Mediated
- Hypotension an Unrecognized Cause of Chronic Fatigue?". Lancet 345:623-624
- (March 11, 1995).
-
- ------------------------------
-
- 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.)
-
- ------------------------------
-
- 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 the next question, part B.) Read the essay on
- "Dealing with Doctors When You Have CFS" by Camilla Cracchiolo, R.N. which can
- be obtained by sending the command GET CFS HANDLEDR as an e-mail message to
- the address LISTSERV@SJUVM.STJOHNS.EDU.
-
- ------------------------------
-
- 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 the next
- question on treatments.
-
- ------------------------------
-
- 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.
-
- ------------------------------
-
- 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.
-
- ------------------------------
-
- 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.
-
- ------------------------------
-
- 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 (of Cheney Institute)
- and Jay Goldstein (CFS Institute) are studying various treatments. The CDC
- team led by Drs. Keiji Fukuda and William Reeves are undertaking prevalence
- studies in the USA. These are just a few of the more prominent studies now
- on-going.
-
- ------------------------------
-
- 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.
-
- ------------------------------
-
- 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.
-
- ------------------------------
-
- 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.
-
- 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.
-
- There is a patients discussion group for fibromyalgia on Internet and Usenet,
- and there are information files available. The discussion group is available
- on Usenet as newsgroup alt.med.fibromyalgia. It can be followed as a mailing
- list by sending the command SUB FIBROM-L YourFirstName YourLastName as an
- e-mail message to the address LISTSERV@VMD.CSO.UIUC.EDU. You can use the GET
- command to obtain several information files from that address also. Send GET
- FIBROM-L FILELIST to that Listserv to see the list of available files, and
- then use GET again to obtain individual files of interest. (See Appendix 2
- for a more detailed explanation of how to get files.)
-
- ------------------------------
-
- 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. The fact that this
- known cardiac condition has diagnostic tests and treatments that are
- already accepted by medical science has important implications for CFS
- research and medical care. The journal citation for this study is listed at
- the end of question 1.03 above. To obtain a special edition of the CFS-NEWS
- electronic newsletter which describes this research, send the command GET
- CFS-NEWS 045 as an e-mail message to the address LISTSERV%ALBNYDH2@ALBANY.EDU.
-
- Neurally mediated hypotension, which is also known a vasodepressor syncope,
- involves mis-regulated blood flow and blood pressure which can lead to
- recurrent fainting. The Hopkins study seems to indicate that many more people
- who do not have recurrent fainting may nonetheless have this condition, *and*
- many in this wider group have chronic fatigue generally and CFS in particular.
- The patients in the Hopkins study who have gotten benefit from the treatment
- have been enthusiastic about
- the results, although the Hopkins researchers themselves are much more
- conservative in their claims at this early point in their research. Although
- the results from this treatment are very encouraging,
- not all patients in the study respond positively to the therapy.
-
- ------------------------------
-
- 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. 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.
-
- ------------------------------
-
- 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 2.03. Here are other
- good resources:
-
- "A Doctor's Guide to CFS", by Dr. David Bell, 1994. 275 pp. $21 from the
- CFIDS Association (see below).
-
- "Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new edition for
- 1992, by Dr. Charles Shepherd, MD. 380 pp. North America: $15 from the CFIDS
- Assoc. Britain: send #8.00 to Reed Consumer Books, Dept. SP, First Floor,
- FREEPOST, Michelin House, 81 Fulham Road, London SW3 6YZ. Accept
- Access/American Express/Barleycard/ Diners Club/Visa. Australia: $12 plus $4
- postage, send to ME/CFS Society Victoria Inc., 23 Livingstone Close, Burwood,
- Victoria, 3125 Australia.
-
- "Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome"
- by Katrina Berne, Ph.D.; 1992; 320 pages; $14 from the CFIDS Assoc.
-
- "Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay Goldstein, M.D.
- 259 pages. 27 color plates. $49.00. Available from the CFIDS Assoc.
-
- [The books above can be purchased from the CFIDS Association of America, Inc.,
- P.O. 220398, Charlotte, NC 28222-0398, USA.]
-
- "Chronic Fatigue Syndrome: A Pamphlet for Physicians", publication # 92-484,
- by the staff of NIH; May 1992; 15 pages; free of charge. For copies, contact
- Office of Communications, N.I.A.I.D., Building 31 Room 7A32, 9000 Rockville
- Pike, Bethesda, MD 20892, tel. 1-202-496-5717. [Note: the text of this
- pamphlet is available as an electronic file, on the Albany Listserv as
- filename CFS NIH-DOC and on various BBSs as CFS-NIH.DOC; see the CFS Network
- Help file described in question 5.04.]
-
- "The Clinical and Scientific Basis of Myalgic Encephalomyelitis /
- Chronic Fatigue Syndrome" edited by Dr. Byron Hyde MD, 75 articles by 80
- researchers; 1992; 750 pp.; $140.00 Canadian or US, which includes postage and
- handling, Canadian orders are not subject to GST; $85 for patients, or
- contact Foundation for commission policy; VISA, MasterCard or American
- Express, include signature, card number and expiration date; order via
- telephone 1-613-728-9643 or fax 1-613-729-0825. Make checks or bank drafts
- payable to Nightingale Research Foundation, 383 Danforth Avenue, Ottawa,
- Ontario K2A 0E1, CANADA.
-
- "Solving the Puzzle of Chronic Fatigue Syndrome" by Michael Rosenbaum, M.D.
- and Murray Susser, M.D. Life Sciences Press, P.O. Box 1174, Tacoma, WA 98401,
- USA.
-
- ------------------------------
-
- 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 5.05)
- most of which are very informative.
-
- The new medical periodical _Journal_of_Chronic_Fatigue_Syndrome_ is now
- available. One year for individuals is $36, for institutions $60, libraries
- $75. In Canada add 30% plus 7% GST. Other non-USA add 40%. Send to Haworth
- Press Inc., 10 Alice St., Binghamton, NY 13904-7981, USA.
-
- There is also the Update (quarterly) from the Massachusetts CFIDS Assoc., 808
- Main St., Waltham, MA 02154, USA. $20/year.
-
- ------------------------------
-
- 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. This FAQ will be
- posted regularly to the alt.med.cfs newsgroup. It is also available via
- e-mail by sending the command GET CFS NET-HELP as a message to the address
- LISTSERV@SJUVM.STJOHNS.EDU.
-
- For advice on how to access Internet and Usenet, see the CFS/ME Electronic
- Resources guide described in the next question.
-
- ------------------------------
-
- 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.
-
- ------------------------------
-
- 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
- CFIDS Foundation, 965 Mission St., Suite 425, San Francisco, CA 94103
- info: 1-415-882-9986 from 1pm-3pm Pacific, fax: 1-415-882-9758
- publication "CFIDS Treatment News" 2/yr for any donation (tax ded.)
- RESCIND, 9812 Falls Road, Suite 114-270, Potomac, MD 20854
- fax: (after 6pm ET) 1-301-983-5644. Internet: MAY12@American.edu
- National CFS & Fibromyalgia Association, 3521 Broadway / Suite 222
- Kansas City, MO 64111, tel. 1-816-931-4777, dues $15/yr
- Fibromyalgia Network, 5700 Stockdale Hwy, Suite 100 Bakersfield, CA 93309
- info: 1-805-631-1950 from 10am-2pm Pacific, dues $15 USA, $17 Canada
- Human Ecology Action League, P.O. Box 49126, Atlanta, GA 30359
- tel. 1-404-248-1898, publishes The Human Ecologist (quarterly)
- National Center for Environmental Health Strategies, 1100 Rural Avenue
- Voorhees, NJ 08043, tel. 1-609-429-5358, dues $15
- American Academy of Environmental Medicine, PO Box 16106 Denver, CO 80216
- tel. 1-303-622-9755
- Chemical Injury Information Network, PO Box 301, White Sulphur Springs, MT
- 59645, contact: Cynthia Wilson, tel. 1-406-547-2255
- National Foundation of Chemical Hypersensitivities and Allergies, PO Box
- 222, Ophelia, VA 22530, tel. 1-804-453-7538
-
- === CANADA ===
-
- M.E. Association, 246 Queen Street, Suite 400, Ottawa, Ontario K1P 5E4
- tel. 1-613-563-1565, fax: 1-613-567-0614. Dues $35
- Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario
- K2A 0E1, tel. 1-613-728-9643, fax: 1-613-729-0825. Dues $35
- National ME/FM Action Network, 3836 Carling Ave., Hwy 17B, Nepean, ON
- K2H 7V2. Dues $20.
-
- === UK ===
-
- Myalgic Encephalomyelitis Association, Box 8, Stanford-le-Hope, Essex
- SS17 8EX, tel. 44-0375-642466 advice line, 1-4pm: 44-0375-361013
- fax: 44-0375-360256. Dues 12 pounds
- Action for M.E., P.O Box 1302, Wells, Somerset BA5 2WE, dues 12.50 pounds
-
- === AUSTRALIA ===
-
- ME/CFS Society of New South Wales, PO Box 449, Crows Nest, NSW 2065
- tel. 61-2-439-6026 fax: 906-7892. dues $25
- ME/CFS Society of Victoria, 23 Livingstone Close, Burwood, Victoria 3125
- tel. 61-3-888-8991
- ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South
- Australia 5001. tel. 61-8-373-2110
- ME Syndrome Society of Queensland, PO Box 12. Oxenford, Queensland 4210
- tel. 61-75-73-2772
- CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth
- Western Australia 6060. tel. 61-09-483-6667
-
- === NEW ZEALAND ===
-
- A.N.Z.M.E. Society, PO Box 35-429, Browns Bay, Auckland 10
-
- === NETHERLANDS ===
-
- M.E. Stichting, Postbus 57436, 1040 BH Amsterdam. Dues 30 guilders/yr.
-
- === BELGIUM ===
-
- AFZ M.E., Predikherenstraat 2, B-3000, Leuven
-
- === 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
-
- ------------------------------
-
- 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.
-
- ------------------------------
-
- Subject: Appendices
-
- ------------------------------
-
- Subject: A1. Where to get the current version of this FAQ
-
- This document is posted regularly to newsgroup alt.med.cfs. It can be
- obtained via Internet e-mail by sending the command GET CFS FAQ as a message
- to LISTSERV@SJUVM.STJOHNS.EDU. You can get automatic updates of this file by
- sending the commmand AFD ADD CFS FAQ CFS-FILE as an e-mail message to
- LISTSERV@SJUVM.STJOHNS.EDU. You can ftp from rtfm.mit.edu, directory and
- filename /pub/usenet/news.answers/medicine/chronic-fatigue-syndrome/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.
-
- FILENAME Title of article
- -------- ---------------------------------------------
-
- CFSLAPP1 TXT | Chronic fatigue syndrome is a real disease.
- Lapp, CW. North Carolina Family Physician,
- Winter 1992.
-
-
- Contents: The CFIDS Chronicle Physicians Forum / CFIDS: The
- Diagnosis of a Distinct Illness. September 1992.
-
- Section I: Descriptive Articles
- CFIDS923 BELL | CFS: Recent Advances in Diagnosis and Treatment.
- Bell DS.
- CFIDS923 CALABRE# | Chronic Fatigue Syndrome. Calabrese L, Danoa T,
- Camara E, Wilke W.
- CFIDS923 CHENEY# | The Diagnosis of CFS: An Assertive Approach.
- Cheney PR, Lapp CW.
- CFIDS923 GOLDSTEI | The Diagnosis of CFS as a Limbic Encephalopathy.
- Goldstein JA.
- CFIDS923 HICKIE# | Diagnosing CFS: Principles and Pitfalls for the
- Patient,
- Physician, and Researcher. Hickie I, Wakefield D.
- CFIDS923 KLIMAS | Diagnosing CFIDS: An Immunologist's Approach.
- Klimas NG.
-
- CFIDS923 JONES# | Section II: Clinical Comments;
- by Jones JF, Komaroff AL, Natelson BH, Peterson DL.
-
- Section III: Research Articles
- CFIDS923 CDC | CFS Research at the Centers for Disease Control.
- CDC CFS Research Group.
- CFIDS923 YUNUS | CFS and Fibromyalgia Syndrome: Similarities and
- Differences; Yunus MB
- CFIDS923 SANDMAN# | Protocol for Cognitive Assessment of CFIDS.
- Sandman CA, Moore S.
- CFIDS923 IGER | The MMPI-2 CFS Profile. Iger LM.
- CFIDS923 HERST | 2'-5' Oligo-Adenylate Synthetase and RNase-L:
- Key Enzymes in the Antiviral Defense
- Mechanism. Herst CV.
-
- - - - - - - - - - -
-
- The above articles and other files of interest are available from the
- SJUVM LISTSERV at St. John's University. To use the SJUVM file server,
- send commands (described as follows) by e-mail to LISTSERV@SJUVM.STJOHNS.EDU.
-
- To get a list of current files available, send the command GET CFS-FILE
- FILELIST to the LISTSERV address above. To retrieve specific files, note
- the filenames on the FILELIST and then send the command GET <filename1>
- <filename2> to the LISTSERV address (each file has a two-part name).
-
- There are other Listservs which also have files of interest. Send the command
- GET CFS-D FILELIST to the address LISTSERV%ALBNYDH2@ALBANY.EDU to obtain a
- list of files available at that facility. For information on fibromyalgia,
- send GET FIBROM-L FILELIST to LISTSERV@VMD.CSO.UIUC.EDU.
-
- ------------------------------
-
- 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
- epidemilogical studies
-
- CEBV -- chronic Epstein-Barr syndrome. CFS was once thought to be this.
-
- CFS -- chronic fatigue syndrome
-
- CFIDS -- chronic fatigue and immune dysfunction syndrome, a name for CFS
- often used in the USA.
-
- CNS -- central nervous system
-
- COQ10 -- co-enzyme Q10, a naturally occuring substance which some patients
- find helpful; available without prescription
-
- DHEA -- dehydroepiandrosterone, a steroid hormone that some patients
- find helpful although this medication has risks
-
- DHHS -- Dept. of Helath and Human Services (USA agency)
-
- EBV -- Epstein-Barr Virus, the cause of infectious mononucleosis and
- linked to Burkitt's Lymphoma and nasopharyngeal cancer; for a time
- it was thought that EBV might be the cause of CFS, but later
- research showed there was no correlation. This latter news is
- still catching up to people, and some physicians still refer to CFS
- as CEBV (i.e, chronic EBV).
-
- EI -- See MCS
-
- EPD -- enzyme potentiated desensitization; a treatment
-
- FDA -- Food and Drug Adminstration; a USA agency which regulates drug
- approvals, nutritional supplements, and food quality and labeling
-
- FMS -- fibromyalgia syndrome; quite similar to CFS, many believe it is the
- same illness, although CFS researcher Dr. Paul Cheney says that FMS
- patients respond well to programs of graduated exercise, while CFS
- will suffer a relapse if they follow the same regimen. There's a
- separate network discussion group for this,
- FIBROM-L@VMD.CSO.UIUC.EDU or newsgroup alt.med.fibromyalgia.
-
- GWS -- (a.k.a. PGS) = Gulf War Syndrome -- condition noted by USA and
- other militaty veterans who fought in the 1991 Persian Gulf war.
- This hasn't been studied enough to clarify that it's one syndrome.
- Many of the patients, though, exhibit symtpoms indistinguishable
- from MCS, and MCS treatments have been very successful with these
- patients (as reported at NIH's workshop on this topic, April '94).
-
- HHV6 -- human herpes virus 6; might be involved in several conditions,
- including CFS.
-
- HMO -- health maintenance organization (USA); a pre-paid plan which
- provides comprehensive medical services
-
- HPA -- hypothalamic-pituitary-adrenal; this axis controls stress response
- and many other bodily functions; damage to this has been implicated
- as a possible cause of CFS.
-
- IVIG -- intravenous gamma globulin; a treatment that some find helpful
-
- MAOI -- monoamine oxidase inhibitors; a class of drugs that some find
- helpful; several risks
-
- MCS -- multiple chemical sensitivities, also known as EI ( = environmental
- illness). Very similar to CFS except that in MCS, chemical & fume
- exposures are a clear trigger that worsen symptoms. Often
- discussed on the "immune" discussion group (to subscribe, contact
- immune-request@weber.ucsd.edu
-
- ME -- myalgic encephalomyelitis; the name for CFS used most commonly
- outside of the USA.
-
- MRI -- magnetic resonance imaging; a kind of brain scan
-
- NIH -- National Institutes of Health (USA agency); largest medical
- research institution in the world
-
- NK -- natural killer cell, a type of immune cell
-
- NSAID -- non-steroidal anti-inflammatory drugs; examples: naproxen,
- ibuprofen; used for pain
-
- PCR -- polymerase chain reaction; a DNA technique used for identifying
- viruses and other life forms
-
- PET -- a kind of brain scan
-
- PHS -- Public Health Service (USA agency); under the DHHS, the PHS
- includes NIH, CDC, and SSA
-
- PNI -- psychoneuroimmunology; new field that studies relations between
- emotions and the immune system
-
- PWC -- person with CFS
-
- PGS -- Persian Gulf Syndrome; see GWS.
-
- PVFS -- post-viral fatigue syndrome; term used in Britain, associated with
- CFS/ME
-
- SoPWC -- spouse of PWC; significant other of a PWC
-
- SPECT -- a kind of brain scan
-
- SSA -- Social Security Adminstration (USA agency), responsible for
- retirement and disability benefits
-
- SSDI -- disability benefit program form the SSA (USA)
-
- SSRI -- selective serotonin re-uptake inhibitors; examples: Zoloft, Paxil,
- Prozac; often used to address fatigue, cognitive dysfunction and
- depression
-
- T4, T8 etc. -- kinds of immune cells
-
- TCA -- tricyclic anti-depressants; examples: doxepin and amitriptyline;
- often used for sleep disorder, and muscle and joint pain;
-
-
- Computer Land abbreviations
-
- btw -- by the way
-
- FAQ - frequently asked question; or, a document that answers frequently
- asked questions
-
- FTP -- file transfer protocol; a nifty Internet utility for storing/
- retrieving files
-
- FWIW -- for whatever it's worth
-
- HTTP -- hypertext protocol; a nifty Internet utility which can link
- multiple resources
-
- IMHO -- in my humble opinion
-
- LOL -- lots of laughter
-
- ROTFL -- roll-on-the-floor laughing
-
- 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: 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
-
- The document has been converted to minimal digest format. The old sections
- 0.03, 0.04 and 0.05 have become appendices 4, 6 and 7. Entire new sections
- are 2.17, 2.18, and this appendix (A5). Section 2.04 concerning stress has
- been expanded to include the topic of psychology. Text changes occurred in
- the following sections:
-
- 0.02
- 1.01
- 1.02
- 1.03
- 1.05
- 2.01
- 2.03 A, B, C, D, F
- 2.04
- 2.05
- 2.07
- 2.11
- 2.13
- 2.16
- 4.01
- 4.02
- 5.02
- Appendices 1, 2, 3, 4, 5 and 7.
-
- ------------------------------
-
- Subject: A6. Development of this FAQ
-
- This is a document whose development is in progress. It is being developed by
- the CFS Internet Group (that is, the participants of the Internet mailing list
- CFS-L and the Usenet newsgroup alt.med.cfs). For further information about
- the group and this project, send electronic mail to
- CFS-L-REQUEST@LIST.NIH.GOV. To participate in developing this document, post
- messages to the FAQ: topic of the CFS-L mailing list or the alt.med.cfs
- newsgroup (see question 5.04).
-
- ------------------------------
-
- Subject: A7. Credits
-
- The initial draft was written by Roger Burns. Some phrases were borrowed from
- "A Guide to CFIDS" by the CFIDS Association. Contributors include Darryl
- Anderson, Sara Brenner, Susan Chapin, Camilla Cracchiolo, Jim Dalton, Nancy
- Evans, Elizabeth Heyman, 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.
-
-
- ================= From: CFS-L@LIST.NIH.GOV ========================
-
-
-