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Subject: FAQ: CFS FAQ

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All FAQs in Directory: medicine/chronic-fatigue-syndrome
All FAQs posted in: alt.med.cfs
Source: Usenet Version

Archive-name: medicine/chronic-fatigue-syndrome/cfs-faq E-mail: send GET CFS FAQ to LISTSERV@MAELSTROM.STJOHNS.EDU Web: http://www.cfs-news.org/faq.htm Posting-Frequency: weekly Version: 1.37 (last revised 1997/08/02)
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, a= t http://www.cfs-news.org/faq.htm. To read how to obtain the latest version o= f this document, and for e-mail readers who cannot receive it as one large file, s= ee Section 0.03 below.=20 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, m= ultiple chemical sensitivities, Gulf War syndrome, neurally mediated hypotension, L= yme 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 Inter= net 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 fat= igue syndrome (CFS). ------------------------------ Subject: 0.02 Disclaimer The information presented in this document was written and developed by pat= ients. It represents an informal catalog of accumulated knowledge by people who for t= he most part are not medical professionals. As this file is developed further, we h= ope to include references and citations which will document the statements that are made h= ere. 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 impo= rtant 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 F= AQ E-mail: create an e-mail message whose text reads GET CFS FAQ and send to LISTSERV@MAELSTROM.STJOHNS.EDU. For those who cannot receive=20 such a large file (about 75 Kbytes) as a single e-mail, then send=20 a message that says GET CFS FAQ SPLIT=3D40K as e-mail to that same=20 address. Web:http://www.cfs-news.org/faq.htm ftp:rtfm.mit.edu at directory and filename /pub/usenet/news.answers/medicine/chronic-fatigue-syndrome/cfs-faq Back to the top ------------------------------ Subject: Part 1: General ------------------------------ Subject: 1.01 What is CFS? Chronic fatigue syndrome (CFS) is an emerging illness characterized by debi= litating fatigue (experienced as exhaustion and extremely poor stamina), neurologica= l 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 usua= lly 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, howev= er they will typically be different among different patients. These include: fatigu= e following stressful activities; headaches; sore throat; sleep disorder; abnormal temp= erature; 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 s= ymptoms will tend to wax and wane over time. This variation, in addition to the fact tha= t 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 E= pstein-Barr Virus (EBV), the cause of mononucleosis, might cause CFS but recent researc= h 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 infect= ion -- this may only be a dysfunction of the immune system itself. A recent concept promulgated by Prof. Mark Demitrack is that CFS is a gener= alized condition which may have any of several causes (in the same way that the co= ndition 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 includ= ing HHV-6, other herpes viruses, enteroviruses, and retroviruses. Additionally, co-fac= tors (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 su= rgery, excessive use of antibiotics, or some other traumatic event. Yet it's unlik= ely 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 observ= able marker that doctors can use to specifically identify the illness, and (3) most doc= tors 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 pa= tients who have these new, unproven illnesses are all too often dismissed as being "ps= ychiatric 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 Kli= mas (U. Miami), Andrew Lloyd (U. New South Wales), Stephen Straus (NIH), and ot= hers. 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 ch= ronic 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 ab= normalities] 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 infectio= ns] Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired Activation of= the Hypothalamic-Pituitary-Adrenal Axis in Patients with Chronic Fatigue Syndro= me". 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 Fu= nction 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 natur= al 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 i= mmune 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 Chr= onic 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. "Det= ection of Intercranial Abnormalities in Patients with Chronic Fatigue Syndrome: Co= mparison of MR Imaging and SPECT" AJR 1994:162:935-941. Rowe, P; Bou-Holaigah, I; Kan, J; Calkins, H;. "Is Neurally Mediated Hypote= nsion 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 Neu= rally Mediated Hypotension and the Chronic Fatigue Syndrome". JAMA, Sept. 27, 199= 5 274:12:961-7. Suhadolnik RJ, Peterson DL, O'Brien K, Cheney PR, et al. Biochemical Eviden= ce for a Novel Low Molecular Weight 2-5A-Dependent RNase L in Chronic Fatigue Syndrome. Journal of Interferon and Cytokine Research, July 1997, 17:377-38= 5.=20 ------------------------------ Subject: 1.04 Who gets CFS? Few studies address this question. Several show that 70 to 80 percent of CF= S 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 pa= tient sees so very many doctors before they can get a diagnosis, that only those with gre= at access to medical care get counted in such studies, thus giving a bias with regards t= o 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 t= he 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 i= s 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 fu= rther information about this, see the web page at http://www.cfs-news.org/name.ht= m, 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). Back to the top ------------------------------ Part 2: Medical issues ------------------------------ Subject: 2.01 How do I find good medical care for CFS? It is very important to find a health practitioner who is familiar with thi= s illness. The symptoms of CFS can be mimicked by other illnesses (autoimmune illnesses, c= ancer, 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 effect= ive for you. It is still an uphill struggle to find a doctor who is experienced in diagn= osing and treating CFS. The best source of advice for identifying local doctors who may be fam= iliar 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 spec= ialist, 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 t= ogether some medical articles which discuss CFS treatments and encourage your docto= r to study them. (See question 2.036 below.) Read the essay on "Dealing with Doc= tors When You Have CFS" by Camilla Cracchiolo, R.N. which can be obtained by sen= ding 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, patien= ts and experienced clinicians have noticed symptom patterns that seem prominent in= CFS. These are described in question 1.01 above, and also include the observatio= ns that cognitive dysfunction often increases over time (over several years), and t= hat 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 Cont= rol and Prevention recommends a step-wise approach for identifying CFS cases. The f= irst step is to clinically evaluate the presence of chronic fatigue, i.e. "self-repor= ted persistent or relapsing fatigue lasting 6 or more consecutive months". Conditions that explain chronic fatigue should exclude a diagnosis of CFS. = These are:=20 - "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= =2E The following should not exclude a diagnosis of chronic fatigue:=20 - 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.=20 After the above criteria are met, the following core criteria for CFS are a= pplied: "A case of the chronic fatigue syndrome is defined by the presence of the foll= owing: 1) clinically evaluated, unexplained persistent or relapsing chronic fatigu= e that is of new or definite onset (has not been lifelong); is not the result of ongo= ing exertion; is not substantially alleviated by rest; and results in substanti= al reduction in previous levels of occupational, educational, social or personal activit= ies; 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 o= f 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, Steph= en Straus, Ian Hickie, Michael Sharpe, James Dobbins, Anthony Komaroff, and the Internatio= nal 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 ex= perienced clinicians, including an article by Charles Lapp and books by Charles Sheph= erd 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 sympt= oms found in those meeting the 1988 CDC criteria. [Komaroff AL, Buchwald D. Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis 1991;13(Supp= l 1):S8-11.] They found the following frequencies: Symptom/sign Frequency (%) fatigue100 low-grade fever60 - 95 myalgias 20 - 95 sleep disorder 15 - 90 impaired cognition 50 - 85 depression70 - 85 headache 35 - 85 pharyngitis 50 - 75 anxiety 50 - 70 muscle weakness40 - 70 Postexertional malaise 50 - 60 worsening of premenstrual50 - 60 symptoms stiffness 50 - 60 visual blurring50 - 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 cough30 - 40 digital swelling 30 - 40 night sweats 30 - 40 painful lymph nodes 30 - 40 rash 30 - 40 Back to the top ------------------------------ Subject: 2.03 What are the specific treatments available for CFS? Many treatments are available. Most seem to be of limited usefulness, howev= er 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 discuss= ion of treatments. ------------------------------ Subject: 2.031 Avoid stress As odd as it may seem, typically the most beneficial program is for the pat= ient 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 exper= iences, but rather any biological stressors, physical or emotional, which prompt a = protective reaction in the body and which may alter physiologic equilibrium ("homeosta= sis"). (Read the discussion about stress under question 2.04.) Failure to avoid st= ress often leads to short-term and long-term set-backs which may be serious. Many pati= ents believe that if they had done more to avoid stress in the early phases of t= he 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 t= hose which have immune-modulating characteristics. CFS patients are unusually sensitiv= e 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 dr= ugs 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 an= d 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) fo= r 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 acup= uncture. Less often prescribed were chiropractic therapy, intra-muscular gamma globu= lin (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 sho= w positive for that condition. ------------------------------ Subject: 2.033 Role of exercise CFS patients will need to avoid stressful activities, and each patient's to= leration 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 rec= ommended against include caffeine, sugar and nutrasweet. Since in many patients it a= ppears that the immune system is over-active, it may be more important than usual to ta= ke 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 th= ey don't have vigorous exercise available as a counterbalance, so diet needs to be m= onitored with this in mind. ------------------------------ Subject: 2.035 Secondary problems There can be several related problems, such as yeast, that need to be watch= ed 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 doct= or 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; ap= pears 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 Am= erica, Inc., PO Box 220398, Charlotte, NC 28222-0398 USA. Several of these are als= o 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, Kli= mas, 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 Conl= ey DO, Burke Cunha, James McCoy, Jay Goldstein and others. $10.00 Book: "The Doctor's Guide to Chronic Fatigue Syndrome", Dr. David Bell, 199= 4. $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 CF= S which are available on the STJOHNS Listserv on the Internet. See Appendix 2 at the en= d of this document. Back to the top ------------------------------ Subject: 2.04 What is the role of stress and psychology in CFS? Preliminary research suggests that CFS may involve a brain disorder -- spec= ifically, HPA dysfunction (see question 2.16) -- which affects the stress response sy= stem in our bodies. CFS patients are standardly observed to be hypersensitive to stress= =2E Stress does not merely mean unpleasant experiences, but rather any biological stre= ssors, physical or emotional, which prompt a protective reaction in the body and w= hich may alter the physiologic equilibrium known as "homeostasis". Stress in this ph= ysiological 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 ha= s already developed. Because stress is often mistakenly thought of as a purely emotio= nal phenomenon with no physical aspect, the correlation of CFS with stress make= s some people imagine that CFS must a non-physical "psychological illness". Medica= l studies show that stress plays an important role in several immune-mediated illness= es, 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 irri= table, and may prompt panic attacks. These behaviors might be misinterpreted, ther= eby 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 epi= demiology. Dr. Mark Demitrack (U. Michigan) and Dr. Stephen Straus (NIH) and others ar= e studying the dysfunction of the hypothalamic-pituitary-adrenal axis as bein= g 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 bi= ological marker found in urine. Dr. Peter Rowe (Johns Hopkins) is studying the possi= ble link between CFS and neurally mediated hypotension. Dr. Anthony Komaroff (Harvar= d) and Dr. Dharam Ablashi (Georgetown) are researching the possible roles of H= HV-6 and EBV (to decipher these abbreviations, see Appendix 3). Drs. Andrew Lloy= d, Ian Hickie, Denis Wakefield and Andrew Wilson (Sydney, Australia) aremaking bro= ad 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 m= ysterious, virus-like particle. Drs. Nancy Klimas, Roberto Patarca (of U. Miami) and J= ay Levy (UCSF) are investigating immunological abnormalities. Drs. Paul Cheney, Cha= rles 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 a= re 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 on= e had come down with the flu. Except that this "flu" doesn't seem to completely go awa= y. 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 ar= e 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 e= nvironment, 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 t= wo. More often, those who recover are more likely to do so from 3 to 6 years after onset. O= thers may recover after a decade or more. Yet for some, the illness seems to simply p= ersist. CFS often occurs in cycles. It can be frustrating to obtain some relief, bu= t 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 n= ot 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 inst= ances intimate family members do not pass on the disease, remains one of the myst= eries 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, an= d immune-related illnesses often have a genetic component. The evidence on th= is point is not clear. And the fact that there seem to be cluster outbreaks of this ill= ness seems to argue against genetics as being the sole factor. Back to the top ------------------------------ Subject: 2.10 Do people die from CFS? Essentially, the answer is no. Little about how CFS works in our bodies wou= ld suggest that it could be fatal. The slowing of metabolism and the weakening of musc= le 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 peopl= e have seen their lives taken away through loss of job, loss of support from famil= y and friends, and loss of ability to take care of oneself. In the face of these vast irra= tional and deeply painful changes, there are many CFS patients who have taken their own lives= =2E 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, so= matoform disorders, etc. One hundred years ago, polio was dismissed in just that fas= hion. 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 n= ot depression. Other noted differences are that CFS patients tend to overestim= ate 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 in= centive 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 s= ymptoms. See also question 2.04 above, regarding stress and psychology. Also, the di= fferences 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 s= ome 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 tha= t 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 illnes= ses are becoming increasingly important in these times. ------------------------------ Subject: 2.13 Does CFS increase the likelihood of cancer? There have been n= o formal studies about this question to date. Clinicians dealing with the illness ha= ve not noticed any higher incidence of cancer among their CFS patients. The issue is raise= d, 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 l= ittle or no memory of their pre-CFS abilities. This surely plays an important and negat= ive 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.=20 ------------------------------ 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 asp= ect to consider is that the responsibilities of parenthood are many and are stress= ful, and this should be considered when planning a family. Back to the top ------------------------------ Subject: 2.16 How does CFS relate to other similar illnesses such as fibrom= yalgia, multiple chemical sensitivities, Gulf War syndrome, neurally mediated hypot= ension, Lyme disease, candida, etc.)? There are several conditions whose symptoms and patterns are so similar tha= t many believe there must be a common mechanism involved. Some research has sugges= ted that dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis may be im= plicated 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 con= ditions, it would be little surprise since the neuroendocrine mechanisms of the HPA axi= s 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 discu= ssed in the article by Calabrese et al. -- see Appendix 2. There are many network resources available that provide discussion and info= rmation about these related conditions. See the CFS Network Help file, described un= der 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 prev= ious question above. However, CFS researcher Dr. Paul Cheney notes that CFS pati= ents have a strong intolerance for exercise, while for fibromyalgia patients, ex= ercise is recommended as being therapeutic. An article by Dr. Muhammed Yunus discusse= s a comparison between these two conditions -- see Appendix 1. There is a patients discussion group for fibromyalgia on Internet and Usene= t, and there are web pages and information files available. To find fibromyalgia informa= tion on the web, you can begin by exploring the links at http://www.cfs-news.org/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 YourFirstNam= e 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 the= m, 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 d= iscovered what appears to be a link between CFS and a well established cardiac condit= ion called neurally mediated hypotension (NHM). The fact that this known cardiac condi= tion has diagnostic tests and treatments that are already accepted by medical scienc= e has important implications for CFS research and medical care. The journal citat= ions for these studies are listed at the end of question 1.03 above. To obtain a spe= cial edition of the CFS-NEWS electronic newsletter (edition #45) which describes this resea= rch, 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 recu= rrent 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 H= opkins study who have gotten benefit from the treatment have been enthusiastic about the= results, although the Hopkins researchers themselves are much more conservative in t= heir claims at this early point in their research. Although the results from thi= s treatment are very encouraging, not all patients in the study respond positively to the t= herapy. ------------------------------ 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-publ= icized 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 s= eemed 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.=20 Back to the top ------------------------------ Subject: Part 3: Life problems created by CFS ------------------------------ Subject: 3.01 How does one live with CFS? - Know that it's not you. It takes a lot to adjust to your new, lessened ca= pabilities, 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 i= n combating any chronic illness, a positive hopeful attitude is essential. - Be prepared for a possible lack of acceptance from some from whom you mig= ht expect support. This may be a shock, but when you cannot regularly "go bowl= ing" with the gang, or you increasingly depend on being accommodated at home or on th= e job, and when you have a condition that your doctor may not certify or that othe= r people have already heard of as "that yuppie disease", then your emotional world w= ill 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, t= o know that your new physical limitations do not limit you as a person, as a soul, no m= atter what other people are thinking. And take some advice from those who have travele= d this difficult road before you -- consider reading from books like those below: "The Alchemy of Illness" by Kat Duff, 1993, Pantheon Book, New York. $19 "Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment" by William Collinge, 1993, The Body Press/Perigee, New York. $13.95 "Living With Chronic Fatigue Syndrome" by Timothy Kenny, 1994, Thunder's Mouth Press, New York. $12.95 ------------------------------ Subject: 3.02 How do I find support groups? To find local support groups, ask your national support organizations. See = the list under question 5.06. To find electronic support groups, see the references under questions 5.04 = and 5.05 below. Back to the top ------------------------------ Subject: Part 4: Income security: Job and/or disability benefits ------------------------------ Subject: 4.01 How do I handle problems about my job? - If your work is, or will likely be, affected by your illness, educate you= r boss about your condition. Do this soon. You may need their support later when more pr= oblems may arise, and it will be easier to educate them while you are still relati= vely productive and "credible". - Understand that you might have to make some severe changes: a change of j= ob, 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 t= o part-time work to preserve their place with their employer. Later, when the= ir health deteriorated even more and they needed to seek disability benefits, they fo= und 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 disabil= ity 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 o= rganizations under question 5.06 for other countries. Some on-line files have some helpful information. See the CFS Social Securi= ty web page. You can get those same files by e-mail from the STJOHNS Listserv, spe= cifically files named CFIDS941 RYAN, CFS SOCSEC1, CFS SOCSEC2, CFS SOCSEC5 and CFS SOCSEC6. See Appendix 1 below for instructions on how to obtain the= se files via e-mail. A "Disability Packet" is available for $5.00 from the CFIDS Association (se= e question 5.06 for the address). They also offer the "Disability Workbook for Social = Security Applicants" by Douglas Smith, Atty. for $15.00. Back to the top ------------------------------ Subject: Part 5: CFS information resources ------------------------------ Subject: 5.01 What other FAQs are available? There are CFS FAQs about resources on Internet/Usenet , on BBSs and commerc= ial networks, and others. A treatments FAQ will be developed, and other special= ized FAQs may also be developed. All of these are described in the CFS Index to FAQs. See the posting on thi= s subject on the alt.med.cfs newsgroup, or alternatively send the command GET CFS IND= EX 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 m= edical articles shown under questions 1.03, 2.02 and 2.036. Here are other good re= sources: "A Doctor's Guide to CFS", by Dr. David Bell, 1994. 275 pp. $21 from the CF= IDS Association (see below). "Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new edition fo= r 1992, by Dr. Charles Shepherd, MD. 380 pp. North America: $15 from the CFIDS Asso= c. 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, In= c., 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 Offic= e 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 i= s 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 shipp= ing; make checks payable to Jacob Teitelbaum MD, send to him by postal mail at 1= 39 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 F= atigue 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 commiss= ion 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 Danfo= rth 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, avail= able for $35 yearly from the CFIDS Association of America, Inc., P.O. 220398, Charlo= tte, 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. O= ne 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., 8= 08 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 t= hrough e-mail. An Internet discussion group for health professionals is being deve= loped. All of these are described in the CFS Network Help FAQ. It is posted regula= rly to the alt.med.cfs newsgroup. It is also available via e-mail by sending the comma= nd 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 resourc= es, 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 availab= le in print and on-line. For a printed copy, please send a stamped, self-addressed legal-sized envel= ope 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=20outside of the USA or Canada, please send to either address and incl= ude 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 t= his 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. Back to the top ------------------------------ 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 93309 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, M= O=20 64111, tel 1-816-960-0991, fax 1-816-960-0993, e-mail ngwrc@gulfweb.org 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 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 =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,=20 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 tel. 01749 670779, fax 01749 672561, e-mail: info@afme.org.uk Association of Youth with M.E (AYME), 5 Medland, Woughton Park, Milton=20 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 free= =20 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,=20 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,=20 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: 31 020-618857= 8=20 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 =20 =3D=3D=3D NORWAY =3D=3D=3D Norges M.E. Forening, Eikveien 96A, 1345 Osteras, tel. & fax: 47-2-249879 dues 45 krona =3D=3D=3D SWEDEN =3D=3D=3D Riksf=F6reningen f=F6r ME-patienter (Swedish Assn of ME patients), Box 132= 6 251 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 Back to the top ------------------------------ Subject: Part 6: Important information ------------------------------ Subject: 6.01 What else is important for me to know about CFS? Medical research and acceptance of the illness will develop only if our nat= ional support organizations which promote them are strong. Be sure to support your nation= al groups by, at the least, contributing annual dues. And when your national group ca= lls for letters and phone calls to be sent to public officials and media, please get your f= amily and friends to assist you in responding to those requests. We may be able to ma= ke greater achievements if we act in unison. In the USA, the largest source of research money comes from government allo= cations. 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 D= ay for chronic fatigue syndrome. May 12 is the birthday of Florence Nightingale, w= ho 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 pro= motes 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. Back to the top ------------------------------ Subject: Appendices ------------------------------ Subject: A1. Articles on-line There are a series of medical articles regarding the diagnosis and treatmen= t of CFS which are available from the STJOHNS Listserv on the Internet. Below are sh= own article titles and authors, with their filenames. Instructions on how to re= trieve the files are described after this listing of articles. On the web version of this do= cument, the filenames below are hotlinked to the full text of each article. CFSLAPP1 TXT "Chronic fatigue syndrome is a real disease"=20 Charles Lapp. North Carolina Family Physician, Winter 1992. CFIDS923 BELL "CFS: Recent Advances in Diagnosis and Treatment"=20 by D Bell CFIDS923 CALABRE# "Chronic Fatigue Syndrome"=20 by L Calabrese, T Danoa, E Camaro, W Wilke; (reprinted from American Family Physician) CFIDS923 CHENEY# "Diagnosis of CFS: An Assertive Approach"=20 by P Cheney, W C Lapp CFIDS923 GOLDSTEI "Diagnosis of CFS as Limbic Encephalopathy"=20 by J Goldstein CFIDS923 HICKIE# "Diagnosing CFS: Principles and Pitfalls for the Patien= t, Physician and Researcher"=20 by I Hickie, D Wakefield CFIDS923 KLIMAS "Diagnosing CFIDS: An Immunologist's Approach"=20 by N Klimas CFIDS923 JONES# "Clinical comments"=20 by J Jones, A Komaroff, B Natelson, D Peterson CFIDS923 YUNUS "CFS and Fibromyalgia Syndrome: Similarities and Differences"=20 by M Yunus CFIDS923 SANDMAN# "Protocol for Cognitive Assessment of CFIDS"=20 by C Sandman, S Moore - - - - - - - - - - The above articles and other files of interest are available from the STJOH= NS LISTSERV at St. John's University. To use the STJOHNS file server, send com= mands (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 FIL= ELIST to the LISTSERV address above. To retrieve specific files, note the filenam= es on the FILELIST and then send the command GET to the LISTSERV address (each file h= as a two-part name). There are other Listservs which also have files of intere= st. Send the command GET CFS-D FILELIST to the address LISTSERV@HEALTH.STATE.NY.US to obtain a list of files available at that fac= ility. For information on fibromyalgia, send GET FIBROM-L FILELIST to LISTSERV@MITVMA.MIT.EDU. Back to the top ------------------------------ Subject: A2. Common abbreviations Below are shown common medical abbreviations that CFS people often come acr= oss. 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 of= ten 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 h= elpful 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 appro= vals, 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 res= pond 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 oth= er 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, exh= ibit 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, incl= uding CFS. HMO -- health maintenance organization (USA); a pre-paid plan which provide= s comprehensive medical services HPA -- hypothalamic-pituitary-adrenal; this axis controls stress response a= nd many other bodily functions; damage to this has been implicated as a possible ca= use of CFS. IVIG -- intravenous gamma globulin; a treatment that some find helpful MAOI -- monoamine oxidase inhibitors; a class of drugs that some find helpf= ul; several risks MCS -- multiple chemical sensitivities, also known as EI ( =3D environmenta= l illness). Very similar to CFS except that in MCS, chemical & fume exposures are a cle= ar trigger that worsen symptoms. Often discussed on the "immune" discussion gr= oup (to subscribe, contact immune-request@weber.ucsd.edu ME -- myalgic encephalomyelitis; the name for CFS used most commonly outsid= e 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 CF= S by research in 1995 NSAID -- non-steroidal anti-inflammatory drugs; examples: naproxen, ibuprof= en; used for pain PCR -- polymerase chain reaction; a DNA technique used for identifying viru= ses 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 emot= ions 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 retireme= nt 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; oft= en 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 ask= ed questions FTP -- file transfer protocol; a nifty Internet utility for storing/ retrie= ving 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. Fo= r 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 specifi= cl locations for ftp, http, etc. resources w.r.t. -- with respect to :-) -- a "smilie", meaning "meant in jest"; (look at it sideways to see the= smilie face) Back to the top ------------------------------ Subject: A3. Further information This FAQ is not comprehensive, and there are (or will be) separate FAQs tha= t describe treatments, electronic resources, and other specialized topics. Th= ese 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 S= ection 1.03, and Section 2.05 now includes references to Suhadolnik, the Sydney, A= ustralia 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 t= o 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 addres= s CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU. ------------------------------ Subject: A6. Credits The initial draft was written by Roger Burns. Some phrases were borrowed fr= om "Understanding CFIDS" by the CFIDS Association of America. Contributors inc= lude 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 e= ditor, Roger Burns -- but read the disclaimer in subject 0.02 above. Back to the top =3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D From: CFS-L@MAELSTROM.STJOHNS.EDU =3D=3D= =3D=3D=3D=3D=3D=3D=3D=3D=3D=20