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Version: 1.37 (last revised 1997/08/02)
This document is quite long (about 1600 lines) and you may wish to save it as a file or print it out. It will be easiest to refer to this document as a web page, at http://www.cfs-news.org/faq.htm. To read how to obtain the latest version of this document, and for e-mail readers who cannot receive it as one large file, see Section 0.03 below.
The CFS FAQ
Frequently Asked Questions
Part 0: Administrivia
C O N T E N T S
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
2.033 Role of exercise
2.034 Dietary changes
2.035 Secondary problems
2.036 Article references
2.04 What is the role of stress in CFS?
2.05 What research is currently going on?
2.06 How does CFS usually begin?
2.07 How long can CFS last?
2.08 Is CFS contagious?
2.09 Is CFS genetic?
2.10 Do people die from CFS?
2.11 Is CFS related to depression?
2.12 Is CFS related to AIDS?
2.13 Does CFS increase the likelihood of cancer?
2.14 How does CFS affect children?
2.15 How does CFS relate to pregnancy?
2.16 How does CFS relate to other similar illnesses such as fibromyalgia, multiple chemical sensitivities, Gulf War syndrome, neurally mediated hypotension, Lyme disease, candida, etc.)?
2.17 How does CFS relate specifically to fibromyalgia?
2.18 How does CFS relate to neurally mediated hypotension?
2.19 How does CFS relate to the Epstein-Barr virus?
Part 3: Life problems created by CFS
3.01 How does one live with CFS?
3.02 How do I find support groups?
Part 4: Income security: Job and/or disability benefits
4.01 How do I handle problems about my job?
4.02 What problems do I face in seeking disability benefits?
Part 5: CFS information resources
5.01 What other FAQs are available?
5.02 What books are available?
5.03 What newsletters and magazines are available?
5.04 What CFS resources are available on Internet and Usenet?
5.05 What CFS resources are available on other electronic networks?
5.06 What national organizations are there?
Part 6: Important information
6.01 What else is important for me to know about CFS?
6.02 What is "May 12 / International Awareness Day"?
A1. Articles on-line
A2. Common abbreviations
A3. Further information
A4. Changes to this edition
A5. Development of this FAQ
Subject: Part 0: Administrivia
Subject: 0.00 Copyright
The CFS FAQ is copyright (c) 1997 by Roger Burns on behalf of the CFS Internet Group. Permission is granted to redistribute or quote this document for non-commercial purposes provided that you include an attribution to the CFS Internet group, the contact address of CFS-L-REQUEST@listserv.icors.org, 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@listserv.icors.org).
Subject: 0.01 Introduction
This document answers frequently asked questions (f.a.q.) about chronic fatigue syndrome (CFS).
Subject: 0.02 Disclaimer
The information presented in this document was written and developed by patients. It represents an informal catalog of accumulated knowledge by people who for the most part are not medical professionals. As this file is developed further, we hope to include references and citations which will document the statements that are made here. In any case, as useful as this information may be it must not be considered to be medical advice, and must not be used as a substitute for medical advice. It is important that anyone who has, or thinks they may have, CFS should consult with a licensed health care practitioner who is familiar with the syndrome.
Subject: 0.03 Where to get the current version of this FAQ
Usenet: posted regularly to newsgroup alt.med.cfs, with the subject line FAQ: CFS FAQ E-mail: create an e-mail message whose text reads GET CFS FAQ and send to LISTSERV@listserv.icors.org. For those who cannot receive such a large file (about 75 Kbytes) as a single e-mail, then send a message that says GET CFS FAQ SPLIT=40K as e-mail to that same 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-faqBack to the top
Subject: Part 1: General
Subject: 1.01 What is CFS?
Chronic fatigue syndrome (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV).
The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.
The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.
Subject: 1.02 What causes CFS?
The cause of the illness is not yet known. Current theories are looking at the possibilities of neuroendocrine dysfunction, viruses, environmental toxins, genetic predisposition, or a combination of these. For a time it was thought that Epstein-Barr Virus (EBV), the cause of mononucleosis, might cause CFS but recent research has discounted this idea. The illness seems to prompt a chronic immune reaction in the body, however it is not clear that this is in response to any actual infection -- this may only be a dysfunction of the immune system itself.
A recent concept promulgated by Prof. Mark Demitrack is that CFS is a generalized condition which may have any of several causes (in the same way that the condition called high blood pressure is not caused by any one single factor). It *is* known that stressors, physical or emotional, seems to make CFS worse.
Some current research continues to investigate possible viral causes including HHV-6, other herpes viruses, enteroviruses, and retroviruses. Additionally, co-factors (such as genetic predisposition, stress, environment, gender, age, and prior illness) appear to play an important role in the development and course of the illness.
Many medical observers have noted that CFS seems often to be "triggered" by some stressful event, but in all likelihood the condition was latent beforehand. Some people will appear to get CFS following a viral infection, or a head injury, or surgery, excessive use of antibiotics, or some other traumatic event. Yet it's unlikely that these events on their own could be a primary cause.
Subject: 1.03 Is CFS a "real" disease?
At this early point, many practicing clinicians remain unconvinced that CFS is a genuine illness, although it is slowly increasing in acceptance. The reluctance is due in part to the facts that (1) no specific cause has yet been found, (2) there is no observable marker that doctors can use to specifically identify the illness, and (3) most doctors are not yet familiar with the peer-reviewed research which does tend to legitimize this disease.
Emerging illnesses such as CFS typically go through a period of many years before they are accepted by the medical community, and during that interim time patients who have these new, unproven illnesses are all too often dismissed as being "psychiatric cases". This has been the experience with CFS as well.
But many top-level researchers are showing that this is a distinct, organic illness. This includes research by Anthony Komaroff (Harvard), Jay Levy (UCSF), Nancy Klimas (U. Miami), Andrew Lloyd (U. New South Wales), Stephen Straus (NIH), and others.
Physicians and scientists may find the following citations of interest:
Levine P; et al. "CFS: Current Concepts" (proceedings of the Oct. 1992 CFS medical conference), Vol. 18 Suppl. 1, January 1994, Clinical Infectious Diseases.
Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic abnormalities in chronic fatigue syndrome". J of Clinical Microbiology 28:1403-1410 (June 90) [Study showing that NK cells (a kind of immune cell) malfunction in CFS patients; other abnormalities]
Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness characterized by fatigue, neurologic and immunologic disorders and HHV-6 infection". Ann Int Med 116:103-112 (Jan 1992) [Study showing many CFS patients have HHV-6 infections]
Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired Activation of the Hypothalamic-Pituitary-Adrenal Axis in Patients with Chronic Fatigue Syndrome". J of Clinical Endocrinology & Metabolism 73:1224-34 (Dec 1991) [shows chemical abnormalities in the brains of CFS patients]
Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte Phenotype and Function in the Chronic Fatigue Syndrome". J of Clinical Immunology 13:30-40 (Jan 93) [Study showing T4 cell (a type of immune cell) abnormalities in CFS patients]
Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo; "Infection of natural killer cells by human herpesvirus 6". Nature 362:458-462 (April 1 1993) [HHV-6 -- previously found in CFS patients -- now shown to kill NK cells (a type of immune cell) -- a small but important advance in research]
Schwartz R, Komaroff A, Garada B, Gleit M, Doolittle T, Bates D, Vasile R, Holman B. "SPECT Imaging of the Brain: Comparison of Findings in Patients with Chronic Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar Depression" AJR 1994:162:943-951.
Schwartz R, Garada B, Komaroff A, Tice H, Gleit M, Jolesz F, Holman B. "Detection of Intercranial Abnormalities in Patients with Chronic Fatigue Syndrome: Comparison of MR Imaging and SPECT" AJR 1994:162:935-941.
Rowe, P; Bou-Holaigah, I; Kan, J; Calkins, H;. "Is Neurally Mediated Hypotension an Unrecognized Cause of Chronic Fatigue?". Lancet 345:623-624 (March 11, 1995).
Bou-Holaigah, I; Rowe, P; Kan, J; Calkins, H. "The Relationship Between Neurally Mediated Hypotension and the Chronic Fatigue Syndrome". JAMA, Sept. 27, 1995 274:12:961-7.
Suhadolnik RJ, Peterson DL, O'Brien K, Cheney PR, et al. Biochemical Evidence for a Novel Low Molecular Weight 2-5A-Dependent RNase L in Chronic Fatigue Syndrome. Journal of Interferon and Cytokine Research, July 1997, 17:377-385.
Subject: 1.04 Who gets CFS?
Few studies address this question. Several show that 70 to 80 percent of CFS patients are women, although some researchers say that these are normal figures for any immune-related illness. Some studies indicate that CFS is less common among lower income people and minorities, but critics point out that the average CFS patient sees so very many doctors before they can get a diagnosis, that only those with great access to medical care get counted in such studies, thus giving a bias with regards to income and race.
Subject: 1.05 Shouldn't this illness have a better name?
There have been many complaints since the name CFS was adopted in 1988 by the U.S. Centers for Disease Control that this name trivializes the illness and reinforces the perception that it may not be a legitimate disease. U.S. policy currently is that there is much medical literature tied to the current name, and that a change of name should wait at least until an accepted biological marker is found. There is discussion going on now within the patient community about changing the name of the illness. For further information about this, see the web page at http://www.cfs-news.org/name.htm, or send an e-mail message which says GET CFS NAME to address LISTSERV@listserv.icors.org, or see the Winter 1997 CFIDS Chronicle published by the CFIDS Association of America (see question 5.06 below).
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Part 2: Medical issues
Subject: 2.01 How do I find good medical care for CFS?
It is very important to find a health practitioner who is familiar with this illness. The symptoms of CFS can be mimicked by other illnesses (autoimmune illnesses, cancer, hepatitis, diabetes, etc.), and if you in fact have another illness that is not properly diagnosed, you may be losing out on getting treatments that might be effective for you.
It is still an uphill struggle to find a doctor who is experienced in diagnosing and treating CFS. The best source of advice for identifying local doctors who may be familiar with CFS is your local support group. And the best way to identify local support groups is to contact one of your national organizations (see question 5.06). If there are no CFS- knowledgeable doctors in your area and you wish to find an out-of-town specialist, you may read about such specialists from time to time in the newsletter of your national organization.
If your own doctor is sympathetic but not knowledgeable, you might gather together some medical articles which discuss CFS treatments and encourage your doctor to study them. (See question 2.036 below.) Read the essay on "Dealing with Doctors When You Have CFS" by Camilla Cracchiolo, R.N. which can be obtained by sending the command GET CFS HANDLEDR as an e-mail message to the address LISTSERV@listserv.icors.org.
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.
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.
- 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."
Subject: 2.022 Clinical views
Several helpful guides to diagnosis have been written by researchers and experienced clinicians, including an article by Charles Lapp and books by Charles Shepherd and by David Bell. See the references under question 2.036 on treatments.
Drs. Buchwald and Komaroff did a study which surveyed the most common symptoms found in those meeting the 1988 CDC criteria. [Komaroff AL, Buchwald D. Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis 1991;13(Suppl 1):S8-11.] They found the following frequencies:Symptom/sign Frequency (%) fatigue 100 low-grade fever 60 - 95 myalgias 20 - 95 sleep disorder 15 - 90 impaired cognition 50 - 85 depression 70 - 85 headache 35 - 85 pharyngitis 50 - 75 anxiety 50 - 70 muscle weakness 40 - 70 Postexertional malaise 50 - 60 worsening of premenstrual 50 - 60 symptoms stiffness 50 - 60 visual blurring 50 - 60 nocturia 50 - 60 nausea 50 - 60 dizziness 30 - 50 arthralgias 40 - 50 tachychardia 40 - 50 dry eyes 30 - 40 dry mouth 30 - 40 diarrhea 30 - 40 anorexia 30 - 40 cough 30 - 40 digital swelling 30 - 40 night sweats 30 - 40 painful lymph nodes 30 - 40 rash 30 - 40Back to the top
Subject: 2.03 What are the specific treatments available for CFS?
Many treatments are available. Most seem to be of limited usefulness, however different patients will respond differently and in some instances there is good response. An FAQ on treatments is being developed, and more detail about these issues will be discussed there. Please see the subsections immediately below for a discussion of treatments.
Subject: 2.031 Avoid stress
As odd as it may seem, typically the most beneficial program is for the patient to avoid stress and to get lots of rest. This is usually the most effective regimen, among others that might also be undertaken. Stress does not merely mean unpleasant experiences, but rather any biological stressors, physical or emotional, which prompt a protective reaction in the body and which may alter physiologic equilibrium ("homeostasis"). (Read the discussion about stress under question 2.04.) Failure to avoid stress often leads to short-term and long-term set-backs which may be serious. Many patients believe that if they had done more to avoid stress in the early phases of the illness, they would not have become nearly so disabled later on. The correlation between stress and the progress of this illness appears to be strong.
Subject: 2.032 Medications
Treatments tend to address the symptoms, since the underlying mechanism of the disease is not really understood. Medications which are helpful are often those which have immune-modulating characteristics. CFS patients are unusually sensitive to drugs and they usually must take doses that are 1/4 or less than standard doses. Some drugs will be a big help to some patients and little or no help to others. And drugs that seem to work for a while may stop being effective later.
According to studies presented at the October 1994 CFS medical conference, widely used treatments included: SSRIs ("selective serotonin re-uptake inhibitors" such as Zoloft, Paxil and Prozac) used to address fatigue, cognitive dysfunction and depression; low dose TCAs ("tricyclic anti-depressants" such as doxepin and amitriptyline) for sleep disorder, and muscle and joint pain; and NSAIDs ("non-steroidal anti-inflammatory drugs" such as ibuprofen and naproxen) for headache, and muscle and joint pain. Other treatments often prescribed are Klonopin, intra-muscular gamma globulin (IMgG), nutritional supplements (particularly anti-oxidants, B-vitamins generally and B-12 specifically), herbs, and acupuncture. Less often prescribed were chiropractic therapy, intra-muscular gamma globulin (IVgG), kutapressin, antivirals, interferon, and transfer factor.
Research from Johns Hopkins University in 1995 indicate that treatment for neurally mediated hypotension may be effective for the many CFS patients who may show positive for that condition.
Subject: 2.033 Role of exercise
CFS patients will need to avoid stressful activities, and each patient's toleration for stress will be different, and can change). It is nonetheless important for patients who can exercise to do so, up to their level of toleration. But this should be done with great care, since crossing the "invisible line" of exercise intolerance for this illness may prompt a serious relapse, and may negatively affect the longer-term future course of the illness.
Subject: 2.034 Dietary changes
CFS patients appear to be alcohol intolerant. Other food products often recommended against include caffeine, sugar and nutrasweet. Since in many patients it appears that the immune system is over-active, it may be more important than usual to take nutritional supplements to replenish burnt up reserves.
Many patients have or develop food sensitivities, and in these cases relief may be found by avoiding foods that prompt problems. Patients tend to gain weight and they don't have vigorous exercise available as a counterbalance, so diet needs to be monitored with this in mind.
Subject: 2.035 Secondary problems
There can be several related problems, such as yeast, that need to be watched out for. Also, CFS has so many symptoms that it's easy to ascribe all new anomalies to this disease. But CFS patients are not exempt from getting other illnesses also, therefore it is important to regularly monitor your health and to consult with your doctor about the changes as they progress.
Subject: 2.036 Article references
The following are citations of articles on CFS medical treatment that your doctor may find useful.
"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
[The following are available by mail order from the CFIDS Association of America, Inc., PO Box 220398, Charlotte, NC 28222-0398 USA. Several of these are also available on Internet by e-mail retrieval; see instructions below.]
"Chronic Fatigue Syndrome is a Real Disease", Charles Lapp; North Carolina Family Physician, Winter 1992. $3.00
Series of articles in Sept. '92 "Diagnosis" edition of CFIDS Chronicle, by Drs. Bell, Calabrese et al., Cheney and Lapp, Jay Goldstein, Hickie and Wakefield, Klimas, and other useful letters and reports. $8.00
Series of articles in Fall 1993 "Treatment" edition of CFIDS Chronicle, by Drs. Cheney and Lapp, Dimitri Viza and Giancarlo Pizza, Perry Orens, Edward Conley DO, Burke Cunha, James McCoy, Jay Goldstein and others. $10.00
Book: "The Doctor's Guide to Chronic Fatigue Syndrome", Dr. David Bell, 1994. $21.00.
Book: "Living With M.E.", Dr. Charles Shepherd, M.D., revised 1992. $15.00
There are a series of medical articles on the diagnosis and treatment of CFS which are available on the STJOHNS Listserv on the Internet. See Appendix 2 at the end of this document.
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Subject: 2.04 What is the role of stress and psychology in CFS?
Preliminary research suggests that CFS may involve a brain disorder -- specifically, HPA dysfunction (see question 2.16) -- which affects the stress response system in our bodies. CFS patients are standardly observed to be hypersensitive to stress. Stress does not merely mean unpleasant experiences, but rather any biological stressors, physical or emotional, which prompt a protective reaction in the body and which may alter the physiologic equilibrium known as "homeostasis". Stress in this physiological sense may be subtle and may not necessarily be noticed. Merely hearing loud sounds or seeing bright lights may be stressful in this context.
High-stress events sometimes seem to "trigger" the first appearance of the illness (see question 2.06), and they will usually worsen the symptoms if the illness has already developed. Because stress is often mistakenly thought of as a purely emotional phenomenon with no physical aspect, the correlation of CFS with stress makes some people imagine that CFS must a non-physical "psychological illness". Medical studies show that stress plays an important role in several immune-mediated illnesses, and in fact a new field of research called psychoneuroimmunology has been created to study just this phenomenon.
HPA and neurotransmitter dysfunction may make CFS patients excessively irritable, and may prompt panic attacks. These behaviors might be misinterpreted, thereby reinforcing a misconception that CFS is merely a psychological condition.
See also question 2.11 which discusses depression, and the questions under Part 3 of this document, "Life problems created by CFS".
Subject: 2.05 What research is currently going on?
There is a great deal of research going on, regarding the possible cause of CFS, many of its symptom mechanisms, possible biological markers, treatments, and epidemiology.
Dr. Mark Demitrack (U. Michigan) and Dr. Stephen Straus (NIH) and others are studying the dysfunction of the hypothalamic-pituitary-adrenal axis as being a possible major explanation for CFS. Prof. Robert Suhadolnik (Temple U., Philadelphia) is exploring a possible bio-marker for CFS found in patients' blood. Drs. Hugh Dunstan and Timothy Roberts (U. Newcastle, Australia) are researching a possible biological marker found in urine. Dr. Peter Rowe (Johns Hopkins) is studying the possible link between CFS and neurally mediated hypotension. Dr. Anthony Komaroff (Harvard) and Dr. Dharam Ablashi (Georgetown) are researching the possible roles of HHV-6 and EBV (to decipher these abbreviations, see Appendix 3). Drs. Andrew Lloyd, Ian Hickie, Denis Wakefield and Andrew Wilson (Sydney, Australia) aremaking broad investigations into many aspect of CFS. Dr. W. John Martin (U. So. Calif.) is studying the "Stealth" virus. Dr. Michael Holmes (U. Otago) is researching another mysterious, virus-like particle. Drs. Nancy Klimas, Roberto Patarca (of U. Miami) and Jay Levy (UCSF) are investigating immunological abnormalities. Drs. Paul Cheney, Charles Lapp and Jay Goldstein are studying various treatments. Drs. Simon Wessely, Michael Sharpe and other British psychiatrists are exploring the value of cognitive behavior therapy for CFS. The CDC team led by Drs. Keiji Fukuda and William Reeves are undertaking prevalence studies in the USA. These are just a few of the more prominent studies now on-going.
Subject: 2.06 How does CFS usually begin?
For a slight majority of patients, the illness begins suddenly as though one had come down with the flu. Except that this "flu" doesn't seem to completely go away. For many other patients, the onset appears gradually over a long period of time.
In many cases, a high-stress event seems to "trigger" the illness. There are many cases in which CFS appears to have begun with a severe head injury, for example. But since such events seem to have no apparent logical connection to the illness that follows, many have speculated that the CFS was latent in people beforehand in these cases, and that the stress of trauma merely triggered the stress-hypersensitivity aspect of the illness. Some have further speculated that other stressful factors in our environment, be they microbes or pollution, may also prompt this illness to bloom.
Subject: 2.07 How long can CFS last?
The illness varies greatly in its duration. A few recover after a year or two. More often, those who recover are more likely to do so from 3 to 6 years after onset. Others may recover after a decade or more. Yet for some, the illness seems to simply persist.
CFS often occurs in cycles. It can be frustrating to obtain some relief, but then not know whether you have recovered or if you are merely between cycles.
Subject: 2.08 Is CFS contagious?
Since the cause of the illness is not known, the question of contagion is not known. Many studies suggest that there is no correlation between CFS and casual or intimate contact. On the other hand, there are infrequent but occasional reports of cluster outbreaks of CFS. How that can happen, while at the same time in other instances intimate family members do not pass on the disease, remains one of the mysteries of this illness.
Subject: 2.09 Is CFS genetic?
Several studies suggest that there may be a genetic component to CFS. This is not surprising since CFS seems to involve immune dysfunction to some degree, and immune-related illnesses often have a genetic component. The evidence on this point is not clear. And the fact that there seem to be cluster outbreaks of this illness seems to argue against genetics as being the sole factor.
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Subject: 2.10 Do people die from CFS?
Essentially, the answer is no. Little about how CFS works in our bodies would suggest that it could be fatal. The slowing of metabolism and the weakening of muscle function, possibly including heart function, might raise some possibilities. But as a general matter, by no means should CFS be considered to be a terminal illness.
On another front, CFS in the more severe cases can be so disabling, and the public and medical understanding of the disease can be so minimal, that many people have seen their lives taken away through loss of job, loss of support from family and friends, and loss of ability to take care of oneself. In the face of these vast irrational and deeply painful changes, there are many CFS patients who have taken their own lives. And so in these cases, what was the cause of death?
Subject: 2.11 Is CFS related to depression?
Many emerging illnesses, before they have gained acceptance by the medical community, have initially been discounted as being hysteria, depression, somatoform disorders, etc. One hundred years ago, polio was dismissed in just that fashion. When CFS gained notice in recent times, many of its symptoms were correlated to depression, and many un-read physicians today still believe that's what CFS is. Much recent research, notably the finding by Demitrack that cortisol levels are low in CFS patients whereas in depressed people they are high, indicates that CFS is not depression. Other noted differences are that CFS patients tend to overestimate their abilities, retain a strong interest in life, and respond poorly to exercise, whereas the opposite are typically observed in people who are depressed.
A politico-economic aspect of this issue is that health insurers have an incentive to classify patients as having temporary illnesses that can be treated cheaply and in a short time. Depression is considered to be a short-term, treatable illness.
Another issue is that CFS patients can get "secondary depression" if their lives have been disrupted because their illness has interfered with their job or their social or family life. This indirect consequence of the illness may be taken by some medical professionals as indicating a cause rather than an effect of the observed symptoms.
See also question 2.04 above, regarding stress and psychology. Also, the differences between CFS and other conditions, including depression, is discussed in the Calabrese article. (See Appendix 2 about how to get this article's text by e-mail.)
Subject: 2.12 Is CFS related to AIDS?
Enough is known about the mechanisms of both diseases to say that they are not the same. The fact that they both seem to involve the immune system, and that some not-fully-researched viruses might have some effect in both, have caused a few people (notably Neenyah Ostrom, a writer for the New York Native) to speculate that there is a common mechanism. The facts that CFS has no correlation to HIV nor shows any AIDS-like breakdown of the immune system shows that these illnesses are not the same. It is nonetheless true that the broad family of immune-related illnesses are becoming increasingly important in these times.
Subject: 2.13 Does CFS increase the likelihood of cancer? There have been no formal studies about this question to date. Clinicians dealing with the illness have not noticed any higher incidence of cancer among their CFS patients. The issue is raised, however, because some research shows that CFS patients have impaired natural killer (NK) cell activity, and it is the NK cells which primarily protect against cancer. So this is an issue that bears watching.
Subject: 2.14 How does CFS affect children?
One of the special aspects of CFS in children is that their self-image and their sense of their own abilities do not develop in a normal fashion, because they have little or no memory of their pre-CFS abilities. This surely plays an important and negative role in their personal development.
An information packet named "CFIDS In Children" is available for $5.50 from the CFIDS Association (see address under question 5.06). See also the Children and CFS web site at http://www.bluecrab.org/health/sickids/sickids.htm.
Subject: 2.15 How does CFS relate to pregnancy?
If anything, in many cases the illness seems to be lessened for the mother during pregnancy, and no problems have been noticed with the children. Another aspect to consider is that the responsibilities of parenthood are many and are stressful, and this should be considered when planning a family.
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Subject: 2.16 How does CFS relate to other similar illnesses such as fibromyalgia, multiple chemical sensitivities, Gulf War syndrome, neurally mediated hypotension, Lyme disease, candida, etc.)?
There are several conditions whose symptoms and patterns are so similar that many believe there must be a common mechanism involved. Some research has suggested that dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis may be implicated in several or all of these conditions. This axis controls stress response and many other bodily functions. If HPA dysfunction is truly involved in many of these conditions, it would be little surprise since the neuroendocrine mechanisms of the HPA axis are both complex and delicate, and thus minor variations in such a dysfunction might well produce the variants we are seeing in these similar illnesses.
The similarities and differences between CFS and other conditions are discussed in the article by Calabrese et al. -- see Appendix 2.
There are many network resources available that provide discussion and information about these related conditions. See the CFS Network Help file, described under question 5.04.
Subject: 2.17 How does CFS relate specifically to fibromyalgia?
Many people believe these may be the same illness, as discussed in the previous question above. However, CFS researcher Dr. Paul Cheney notes that CFS patients have a strong intolerance for exercise, while for fibromyalgia patients, exercise is recommended as being therapeutic. An article by Dr. Muhammed Yunus discusses a comparison between these two conditions -- see Appendix 1.
There is a patients discussion group for fibromyalgia on Internet and Usenet, and there are web pages and information files available. To find fibromyalgia information on the web, you can begin by exploring the links at http://www.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 YourFirstName YourLastName as an e-mail message to the address LISTSERV@MITVMA.MIT.EDU. There are fibromyalgia FAQs for patients, for doctors, and a help file about pain, all available by e-mail. To obtain them, create an e-mail message which says
GET FIBROM-L PT-FAQand send to address LISTSERV@MITVMA.MIT.EDU.
GET FIBROM-L MD-FAQ
GET FM-PAIN HANDOUT
Subject: 2.18 How does CFS relate to neurally mediated hypotension?
This is a new area of study. Researchers at Johns Hopkins University have discovered what appears to be a link between CFS and a well established cardiac condition called neurally mediated hypotension (NHM). The fact that this known cardiac condition has diagnostic tests and treatments that are already accepted by medical science has important implications for CFS research and medical care. The journal citations for these studies are listed at the end of question 1.03 above. To obtain a special edition of the CFS-NEWS electronic newsletter (edition #45) which describes this research, send the command GET CFS-NEWS 045 as an e-mail message to the address LISTSERV@HEALTH.STATE.NY.US .
Neurally mediated hypotension, which is also known a vasodepressor syncope, involves mis-regulated blood flow and blood pressure which can lead to recurrent fainting. The Hopkins study seems to indicate that many more people who do not have recurrent fainting may nonetheless have this condition, *and* many in this wider group have chronic fatigue generally and CFS in particular. The patients in the Hopkins study who have gotten benefit from the treatment have been enthusiastic about the results, although the Hopkins researchers themselves are much more conservative in their claims at this early point in their research. Although the results from this treatment are very encouraging, not all patients in the study respond positively to the therapy.
Subject: 2.19 How does CFS relate to the Epstein-Barr virus?
The Epstein-Barr virus (EBV) is the cause of mononucleosis, and a well-publicized study in 1985 suggested that there may be a strong correlation to CFS. But many doctors have not read the later research that has minimized what at first seemed to be a strong link. The original apparent correlation was described in:
Straus SE, Tosato G, Armstrong G, Lawley T, et al. Persisting illness and fatigue in adults with evidence of Epstein-Barr infection. Ann Intern Med 1985; 102:7-16.Later studies showed that many CFS patients have had no exposure to EBV at all. This clarification has been shown in:
Buchwald D, Sullivan JL, Komaroff AL. Frequency of "chronic active Epstein-Barr" virus infection in a general medical practise. JAMA 1987; 257:2303-7.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.
Holmes GP, Kaplan JE, Stewart JA, et al. A cluster of patients with a chronic mononucleosis-like syndrome. JAMA 1987; 257:2297-302.
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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.
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Subject: Part 4: Income security: Job and/or disability benefits
Subject: 4.01 How do I handle problems about my job?
- If your work is, or will likely be, affected by your illness, educate your boss about your condition. Do this soon. You may need their support later when more problems may arise, and it will be easier to educate them while you are still relatively productive and "credible".
- Understand that you might have to make some severe changes: a change of job, or perhaps an involuntary loss of your job and a shift to disability benefits.
- Beware of the trap of losing important disability benefits if you switch to part time work. Many CFS patients whose health was spiraling downwards had switched to part-time work to preserve their place with their employer. Later, when their health deteriorated even more and they needed to seek disability benefits, they found out too late that those benefits for a part-time employee did not include a livable income, whereas if they had gone straight from full-time to disability, the disability payments were much more livable. Be careful.
Subject: 4.02 What problems do I face in seeking disability benefits? This section will describe some resources for USA disability benefits. Contact the national organizations under question 5.06 for other countries.
Some on-line files have some helpful information. See the CFS Social Security web page. You can get those same files by e-mail from the STJOHNS Listserv, specifically files named CFIDS941 RYAN, CFS SOCSEC1, CFS SOCSEC2, CFS SOCSEC5 and CFS SOCSEC6. See Appendix 1 below for instructions on how to obtain these files via e-mail.
A "Disability Packet" is available for $5.00 from the CFIDS Association (see question 5.06 for the address). They also offer the "Disability Workbook for Social Security Applicants" by Douglas Smith, Atty. for $15.00.
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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@listserv.icors.org.
Subject: 5.02 What books are available?
Note the support-oriented books listed under question 3.01 above, and the medical articles shown under questions 1.03, 2.02 and 2.036. Here are other good resources:
"A Doctor's Guide to CFS", by Dr. David Bell, 1994. 275 pp. $21 from the CFIDS Association (see below).
"Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new edition for 1992, by Dr. Charles Shepherd, MD. 380 pp. North America: $15 from the CFIDS Assoc. Britain: send #8.00 to Reed Consumer Books, Dept. SP, First Floor, FREEPOST, Michelin House, 81 Fulham Road, London SW3 6YZ. Accept Access/American Express/Barleycard/ Diners Club/Visa. Australia: $12 plus $4 postage, send to ME/CFS Society Victoria Inc., 23 Livingstone Close, Burwood, Victoria, 3125 Australia.
"Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome" by Katrina Berne, Ph.D.; 1992; 320 pages; $14 from the CFIDS Assoc.
"Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay Goldstein, M.D. 259 pages. 27 color plates. $49.00. Available from the CFIDS Assoc.
[The books above can be purchased from the CFIDS Association of America, Inc., P.O. 220398, Charlotte, NC 28222-0398, USA.]
"Chronic Fatigue Syndrome: A Pamphlet for Physicians", publication # 92-484, by the staff of NIH; May 1992; 15 pages; free of charge. For copies, contact Office of Communications, N.I.A.I.D., Building 31 Room 7A32, 9000 Rockville Pike, Bethesda, MD 20892, tel. 1-202-496-5717. [Note: the text of this pamphlet is available as an electronic file, on the Albany Listserv as filename CFS NIH-DOC and on various BBSs as CFS-NIH.DOC; see the CFS Network Help file described in question 5.04.]
"From Fatigued to Fantastic: A Manual for Moving Beyond Chronic Fatigue and Fibromyalgia" by Jacob Teitelbaum, MD; 1995; 190 pp.; $22.95 includes shipping; make checks payable to Jacob Teitelbaum MD, send to him by postal mail at 139 Old Solomon Island Road, Annapolis, Maryland 21401 USA, or phone 1-800-333-5287 or fax 1-410-224-4926, for volume discounts phone 1-410-224-2222.
"The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" edited by Dr. Byron Hyde MD, 75 articles by 80 researchers; 1992; 750 pp.; $140.00 Canadian or US, which includes postage and handling, Canadian orders are not subject to GST; $85 for patients, or contact Foundation for commission policy; VISA, MasterCard or American Express, include signature, card number and expiration date; order via telephone 1-613-728-9643 or fax 1-613-729-0825. Make checks or bank drafts payable to Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario K2A 0E1, CANADA.
"Solving the Puzzle of Chronic Fatigue Syndrome" by Michael Rosenbaum, M.D. and Murray Susser, M.D. Life Sciences Press, P.O. Box 1174, Tacoma, WA 98401, USA.
Subject: 5.03 What newsletters and magazines are available?
The most widely read CFS journal in the world is the CFIDS Chronicle, available for $35 yearly from the CFIDS Association of America, Inc., P.O. 220398, Charlotte, NC 28222-0398, USA.
Each national organization also has its own publication (see question 5.06) which as a rule are very informative.
Journal of Chronic Fatigue_Syndrome. This is a quarterly medical journal. One year for individuals is $36, for institutions $60, libraries $150. In Canada add 30% plus 7% GST. Other non-USA add 40%. Send to Haworth Press Inc., 10 Alice St., Binghamton, NY 13904-7981, USA. Other contact info: tel. (USA) 1-800-HAWORTH; elsewhere 1-607-772-5857; fax 1-607-771-0012; e-mail: email@example.com
There is also the Update (quarterly) from the Massachusetts CFIDS Assoc., 808 Main St., Waltham, MA 02154, USA. $20/year.
Subject: 5.04 What CFS resources are available on Internet and Usenet?
There is a patients discussion group, available at CFS-L@listserv.icors.org or as newsgroup alt.med.cfs. There is also the CFS-NEWS electronic newsletter, the CFS Newswire service, Catharsis magazine, and many helpful articles and other documents available on-line through e-mail. An Internet discussion group for health professionals is being developed.
All of these are described in the CFS Network Help FAQ. It is posted regularly to the alt.med.cfs newsgroup. It is also available via e-mail by sending the command GET CFS NET-HELP as a message to the address LISTSERV@listserv.icors.org.
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 ProjectCanadians should send to:
P.O. Box 11347
Washington, DC 20008-0547
CFS/ME Computer Networking ProjectFrom 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.
3332 McCarthy Road
P.O. Box 37045
Ottawa, Ontario K1V 0W0
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@listserv.icors.org. 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.
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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 e-mail: firstname.lastname@example.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, MO 64111, tel 1-816-960-0991, fax 1-816-960-0993, e-mail email@example.com MCS Referral and Resources, 508 Westgate Road, Baltimore, MD 21229-2343 tel. 1-410-362-6400, fax: 1-410-448-3317, e-mail: firstname.lastname@example.org 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, e-mail email@example.com 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 === M.E. Association, Box 8, Stanford-le-Hope, Essex SS17 8EX, tel. 44-0375-642466 advice line, 1-4pm: 44-0375-361013 fax: 44-0375-360256. Dues 12 pounds Action for M.E., P.O Box 1302, Wells, Somerset BA5 2WE, dues 12.50 pounds tel. 01749 670779, fax 01749 672561, e-mail: firstname.lastname@example.org Association of Youth with M.E (AYME), 5 Medland, Woughton Park, Milton Keynes MK6 3BH, tel/fax: 01908 691635, e-mail: email@example.com, free membership to under 25's in the UK, bi-monthly newsletter and free pen-pal service === IRELAND === Irish M.E./C.F.S. Support Group, P.O. Box 3075, Dublin 2 Tel/Fax: 353-01-2350965) E-mail: firstname.lastname@example.org Membership: 5 pounds per year (reduced or free membership is available for those in financial difficulties) === AUSTRALIA === ME/CFS Society of New South Wales, PO Box 449, Crows Nest, NSW 2065 tel. 61-2-439-6026 fax: 906-7892 e-mail: email@example.com dues $25 ME/CFS Society of Victoria, 23 Livingstone Close, Burwood, Victoria 3125 tel. 61-3-888-8798, e-mail firstname.lastname@example.org ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South Australia 5001. tel. 61-8-373-2110 ME/CFS Syndrome Society of Queensland, PO Box 938, Fortitude Valley, Qld 4006, tel. 61-7-3832-9744 e-mail: email@example.com ACT ME/CFS Society, PO Box 717, Mawson, ACT 2607, tel. 61-6-290-1984, fax 286-4475 CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth Western Australia 6060. tel. 61-09-483-6667 === NEW ZEALAND === ANZMES, P O Box 36-307, Northcote, Auckland Email: firstname.lastname@example.org Tel: +64 (09) 269 6374 Fax: +64 (07) 349 0795 (please call first) === NETHERLANDS === ME Fonds c/o Hanneke Los, Pres. Kennedylaan 745, 1079 MR Amsterdam Tel: 31 020 6445566 Fax: 31 020 6445440 Email: email@example.com ME Lobby c/o Marc Fluks, de Bosch Kemperpad 136, 1054 PM Amsterdam Tel: 31 020 6189095 Email: firstname.lastname@example.org ME Stichting, Robert Scottsstraat 4, 1056 AX Amsterdam, Fax: 31 020-6188578 Tel: 31 (0)20-6895162 (maandag, woensdag, vrijdag 10-12 uur) === BELGIUM === Ms. Alice Vertomme, Dorp 7, 3221 Nieuw Rode, Tel: 32 16 570983 === DENMARK === 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 === NORWAY === Norges M.E. Forening, Eikveien 96A, 1345 Osteras, tel. & fax: 47-2-249879 dues 45 krona === SWEDEN === Riksföreningen för ME-patienter (Swedish Assn of ME patients), Box 1326 251 13 HELSINGBORG. tel: 46 42-18-22-67. Quarterly newsletter. annual dues: 150 kronor === GERMANY === Foerderverein fuer CFS/CFIDS/ME-Erkrankte Fatigatio e. V., Postfach 410261, D-53024 Bonn tel: 49 228 66-02-33 fax: 49-228-66 06 87 email: Fatigatio@t-online.de === ITALY === C.F.S. Associazione Italia, Segreteria: Via Moimacco 20, 33100, Udine
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Subject: Part 6: Important information
Subject: 6.01 What else is important for me to know about CFS?
Medical research and acceptance of the illness will develop only if our national support organizations which promote them are strong. Be sure to support your national groups by, at the least, contributing annual dues. And when your national group calls for letters and phone calls to be sent to public officials and media, please get your family and friends to assist you in responding to those requests. We may be able to make greater achievements if we act in unison.
In the USA, the largest source of research money comes from government allocations. Therefore, contacting your Congressman about the importance of CFS/CFIDS research is very important.
Subject: 6.02 What is "May 12 / International Awareness Day"?
May 12 has been chosen by many national groups as International Awareness Day for chronic fatigue syndrome. May 12 is the birthday of Florence Nightingale, who had an undiagnosed, debilitating disease for many decades. Despite her constraints, Nightingale was able to found the International Red Cross.
The concept of May 12 as International Awareness Day was developed by Tom Hennessy. He has now founded the RESCIND organization (Repeal Existing Stereotypes about Chronic Immunologic and Neurological Disorders) which promotes solutions for CFS, fibromyalgia, multiple chemical sensitivities, and Gulf War Syndrome. RESCIND can be contacted at 9812 Falls Road, Suite 114-270, Potomac, MD 20854, USA, fax: (after 6pm ET) 1-301-983-5644, Internet: RESCINDinc@aol.com.
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Subject: A1. Articles on-line
There are a series of medical articles regarding the diagnosis and treatment of CFS which are available from the STJOHNS Listserv on the Internet. Below are shown article titles and authors, with their filenames. Instructions on how to retrieve the files are described after this listing of articles. On the web version of this document, the filenames below are hotlinked to the full text of each article.
- - - - - - - - - -
- CFSLAPP1 TXT "Chronic fatigue syndrome is a real disease"
- Charles Lapp. North Carolina Family Physician, Winter 1992.
- CFIDS923 BELL "CFS: Recent Advances in Diagnosis and Treatment"
- by D Bell
- CFIDS923 CALABRE# "Chronic Fatigue Syndrome"
- by L Calabrese, T Danoa, E Camaro, W Wilke; (reprinted from American Family Physician)
- CFIDS923 CHENEY# "Diagnosis of CFS: An Assertive Approach"
- by P Cheney, W C Lapp
- CFIDS923 GOLDSTEI "Diagnosis of CFS as Limbic Encephalopathy"
- by J Goldstein
- CFIDS923 HICKIE# "Diagnosing CFS: Principles and Pitfalls for the Patient, Physician and Researcher"
- by I Hickie, D Wakefield
- CFIDS923 KLIMAS "Diagnosing CFIDS: An Immunologist's Approach"
- by N Klimas
- CFIDS923 JONES# "Clinical comments"
- by J Jones, A Komaroff, B Natelson, D Peterson
- CFIDS923 YUNUS "CFS and Fibromyalgia Syndrome: Similarities and Differences"
- by M Yunus
- CFIDS923 SANDMAN# "Protocol for Cognitive Assessment of CFIDS"
- by C Sandman, S Moore
The above articles and other files of interest are available from the STJOHNS LISTSERV at St. John's University. To use the STJOHNS file server, send commands (described as follows) by e-mail to LISTSERV@listserv.icors.org. To get a list of current files available, send the command GET CFS-FILE FILELIST to the LISTSERV address above. To retrieve specific files, note the filenames on the FILELIST and then send the command GET
to the LISTSERV address (each file has a two-part name). There are other Listservs which also have files of interest. Send the command GET CFS-D FILELIST to the address LISTSERV@HEALTH.STATE.NY.US to obtain a list of files available at that facility. For information on fibromyalgia, send GET FIBROM-L FILELIST to LISTSERV@MITVMA.MIT.EDU.
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Subject: A2. Common abbreviations
Below are shown common medical abbreviations that CFS people often come across. Following these are a list of abbreviations often found in computer network discussions.
BEAM - A kind of brain scan
CBC - complete blood count
CD4, CD8 etc. -- immune cells
CDC -- Centers for Disease Control and Prevention (USA agency), responsible for estimating prevalence rates and making epidemiological studies
CEBV -- chronic Epstein-Barr syndrome. CFS was once thought to be this.
CBT - cognitive behavior therapy
CFS -- chronic fatigue syndrome
CFIDS -- chronic fatigue and immune dysfunction syndrome, a name for CFS often used in the USA.
CNS -- central nervous system
COQ10 -- co-enzyme Q10, a naturally occuring substance which some patients find helpful; available without prescription
DD -- (slang) the "damned disease", i.e. CFS
DHEA -- dehydroepiandrosterone, a steroid hormone that some patients find helpful although this medication has risks
DHHS -- Dept. of Health and Human Services (USA agency)
EBV -- Epstein-Barr Virus. See question 2.19 above.
EI -- See MCS
EPD -- enzyme potentiated desensitization; a treatment
FDA -- Food and Drug Adminstration; a USA agency which regulates drug approvals, nutritional supplements, and food quality and labeling
FMS -- fibromyalgia syndrome; quite similar to CFS, many believe it is the same illness, although CFS researcher Dr. Paul Cheney says that FMS patients respond well to programs of graduated exercise, while CFS will suffer a relapse if they follow the same regimen. There's a separate network discussion group for this, FIBROM-L@MITVMA.MIT.EDU or newsgroup alt.med.fibromyalgia.
GWS -- (a.k.a. PGS) = 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 email@example.com
ME -- myalgic encephalomyelitis; the name for CFS used most commonly outside of the USA.
MRI -- magnetic resonance imaging; a kind of brain scan
NIH -- National Institutes of Health (USA agency); largest medical research institution in the world
NK -- natural killer cell, a type of immune cell
NMH -- neurally mediated hypotension, a blood pressure ailment linked to CFS by research in 1995
NSAID -- non-steroidal anti-inflammatory drugs; examples: naproxen, ibuprofen; used for pain
PCR -- polymerase chain reaction; a DNA technique used for identifying viruses and other life forms
PET -- a kind of brain scan
PHS -- Public Health Service (USA agency); under the DHHS, the PHS includes NIH, CDC, and SSA
PNI -- psychoneuroimmunology; new field that studies relations between emotions and the immune system
PWC -- person with CFS
PGS -- Persian Gulf Syndrome; see GWS.
PVFS -- post-viral fatigue syndrome; term used in Britain, associated with CFS/ME
SoPWC -- spouse of PWC; significant other of a PWC
SPECT -- a kind of brain scan
SSA -- Social Security Adminstration (USA agency), responsible for retirement and disability benefits
SSDI -- disability benefit program from the SSA (USA)
SSRI -- selective serotonin re-uptake inhibitors; examples: Zoloft, Paxil, Prozac; often used to address fatigue, cognitive dysfunction and depression
T4, T8 etc. -- kinds of immune cells
TCA -- tricyclic anti-depressants; examples: doxepin and amitriptyline; often used for sleep disorder, and muscle and joint pain;
TTT -- tilt table test; used to diagnose neurally mediated hypotension (NMH), a condition that has been linked to CFS
Computer and other common abbreviations
bbiaf -- be back in a few (an IRC term)
brb -- be right back (an IRC term)
btw -- by the way
FAQ - frequently asked question; or, a document that answers frequently asked questions
FTP -- file transfer protocol; a nifty Internet utility for storing/ retrieving files
FWIW -- for whatever it's worth
HTTP -- hypertext transfer protocol; the Internet utility which enables the World Wide Web to link multiple resources together
IAIYH -- "It's all in your head"
IMHO -- in my humble opinion
IRC -- Internet Relay Chat. Live conferences take place on this service. For info, send GET CFS IRC as e-mail to LISTSERV@listserv.icors.org.
LOL -- lots of laughter
OIC -- Oh, I see!
ROTFL -- roll-on-the-floor laughing
TTYL -- talk to you later
URL -- universal resource locator; an Internet term that identifies specificl locations for ftp, http, etc. resources
w.r.t. -- with respect to
:-) -- a "smilie", meaning "meant in jest"; (look at it sideways to see the smilie face)
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Subject: A3. Further information
This FAQ is not comprehensive, and there are (or will be) separate FAQs that describe treatments, electronic resources, and other specialized topics. These related FAQs can likely be found near to where you have found this one. Or consult the CFS Index of FAQs which can be obtained in several ways, including sending the command GET CFS INDEX as an e-mail message to address LISTSERV@listserv.icors.org.
Subject: A4. Changes to this edition
Information about Suhadolnik's research on a bio-marker has been added to Section 1.03, and Section 2.05 now includes references to Suhadolnik, the Sydney, Australia research team, and CBT work being done by Wessely, Sharpe, et al. "CBT has been added to the abbreviations in Appendix 2.
Subject: A5. Development of this FAQ
This is a document whose development is in progress. Please make comments to help improve it. Post suggestions to the FAQ: topic of the CFS-L mailing list or the alt.med.cfs newsgroup, or send privately to the group's moderator at address CFS-L-REQUEST@listserv.icors.org.
Subject: A6. Credits
The initial draft was written by Roger Burns. Some phrases were borrowed from "Understanding CFIDS" by the CFIDS Association of America. Contributors include Darryl Anderson, Sara Brenner, Susan Chapin, Camilla Cracchiolo, Jim Dalton, Nancy Evans, Elizabeth Heyman, Jan Horton, Ruth Hyman, Marjorie Panditji, Dorothy Roberts, Sandy Shaw, Al Shinn and Malcolm Watts. All errors belong to the editor, Roger Burns -- but read the disclaimer in subject 0.02 above.
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