Chronic Fatigue Syndrome (CFS) 
The resources listed in this guide are compiled by the Consumer Health Information Service, 3rd floor, Toronto Reference Library. Complementary materials may also be found at the North York Central Library and local branches of the Toronto Public Library.
Definition :Chronic Fatigue Syndrome [CFS]: “Clinically evaluated, unexplained, persistent, or relapsing chronic fatigue (> 6 months duration) 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.
Four or more of the following symptoms are concurrently present for >6 months: impaired memory or concentration; sore throat; tender cervical or axillary lymph nodes; muscle pain; multijoint pain; new headaches; unrefreshing sleep; or postexertion malaise.
This syndrome is exclusionary of: any active condition that could explain the chronic fatigue; any previously diagnosed medical condition whose resolution has not been documented beyond reasonable clinical doubt and whose continued activity may explain the chronic fatiguing illness; psychotic major derpression, bipolar affective disorder, schizophrenia, delusional disorders, dementias, anorexia nervosa, bulimia nervosa; alcohol or other substance abuse within 2 years prior to the onset of the chronic fatigue and at any time afterward.” [Center for Disease Control revision of the Chronic Fatigue Syndrome Definition, 1994]Chronic Fatigue: Also known as idiopathic [of unknown cause] chronic fatigue, it relates to “clinically evaluated, unexplained chronic fatigue (> 6 months duration) that fails to meet the definition for chronic fatigue syndrome”. [Center for Disease Control revision of the Chronic Fatigue Syndrome Definition, 1994]
Fatigue: “Extreme tiredness”. [Gale Encyclopedia of Medicine, Edition 1, 1999, p. 712; found on the Health Reference Center CD-ROM database]
Fibromyalgia: “A disorder closely related to CFS. Symptoms include pain, tenderness, and muscle stiffness”. [Gale Encyclopedia of Medicine, Edition 1, 1999; found on the Health Reference Center CD-ROM database]
Myalgic Encephalomyelitis [M.E.]: “An older name for chronic fatigue syndrome; encephalomyelitis refers to inflammation of the brain and spinal cord”. [Gale Encyclopedia of Medicine, Edition 1, 1999; found on the Health Reference Center CD-ROM database]
Syndrome: “A collection of uniquely presented symptoms and physical signs for which a cause has yet to be found. A disease, in contrast, is a manifestation of illness for which medicine has an explanation”. [Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. By Hillary Johnson. New York: Crown Publishers, 1996. p.6]
For further information:The Chronic Fatigue Immune Dysfunction Syndrome Association of America
P.O. Box 220397
Charlotte, NC 28222-0398
Phone: 1-800-442-3437
Fax: (704) 365-2343 E-mail: cfids@cfids.org
In addition to publishing The CFIDS Chronicle, the Association directly funds CFIDS research and advocacy efforts and provides free information about CFIDS to all who inquire. The Association serves as a clearinghouse for information about chronic fatigue and immune dysfunction syndrome, also known as chronic fatigue synrome, myalgic encephalomyelitis and other names. Membership is $45.00/year payable in U.S. funds.The National ME/FM Action Network
3836 Carling Avenue
Nepean, ON K2K 2Y6
Phone/Fax: (613) 829-6667 E-mail: ag922@freenet.carleton.ca
“A registered, charitable, non-profit organization dealing with Myalgic Enciphalomelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/FM)—offering support, advocacy, education and research into the many, varied anomalies of theses illnesses.” [taken from website home page, Aug. 2000] Membership is $20.00/year which includes the newsletter, Quest, every two months.
Books:Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome: Insights From Practitioners and Patients. By Mari Skelly and Andrea Helm, with an introduction by Paul B. Brown. Alameda, CA: Hunter House, 1999. 256 p. Paper. $15.95 U.S.
“Personal testimony from patients and their medical practitioners frames the resounding message of this book: there are a lot of alternatives therapies available to help people with chronic fatigue syndrome and fibromyalgia.” [editorial book review taken from the website of Amazon.com, August 2000]Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS. Revised and Updated. By Gregg Charles Fisher. New York: Warner Books Inc., 1997. 242 p. Paper. $14.99 Cdn.
Up-to-date research and treatment breakthroughs by five of the nation’s most respected CSF specialists are presented. This edition includes: guidelines for coping with CFS from diagnosis to healing; new information on kutapressin and Florinef, the medications changing the lives of many CSF sufferers; advice on CFS-related depression and sleep disorders; newly recognized treatments and health problems of CFS patients, and recent findings by the National Institutes of Health; information on all medical treatments…gamma globulin, transfer factor, antidepressants, and more; and essential CSF support groups, organizations, and associations.” [back cover]Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: A Complete and Compassionate Guide. By Katrina Berne and Daniel L. Peterson. Alameda, CA: Hunter House, 2000 [July]. 352 p. Paper. $15.95 U.S.
“Revised and expanded, this edition offers the latest findings on chronic fatigue, fibromyalgia, and overlapping diseases such as Gulf War Syndrome. It includes new information on the interaction of the brain, emotions, and immune system as well.” [book review from web-site of Amazon.com, August 2000]Coping with Chronic Fatigue Syndrome: Nine Things You Can Do. By Fed Friedberg. Oakland, CA: New Harbinger, 1995. 166 p. Paper. $19.50 Cdn.
The author is a researcher and therapist who has lived with CFS for fifteen years and has devoted much of his personal and professional life to learning what CFS is and teaching how to cope with it. “Reflecting the latest research on what CFS is and the best way to cope, the strategies presented in this book will help improve tolerance of symptoms, reduce the stress caused by the illness, generate a sense of well-being, handle the disbelief and skepticism of others, and deal with impossible expectations that worsen the condition. It provides understanding, encouragement, and hope for all those who are affected by CFS.” [back cover]Dr. Susan Lark’s Chronic Fatigue Self Help Book. Revised and updated. By Susan Lark. Berleley, CA: Celestial Arts, 1995. 232 p. Paper. $16.95 U.S.
“Dr. Susan Lark is one of the foremost authorities in the field of women’s health care and preventative medicine. Part of Dr. Lark’s popular Self Help Library series, [the text] is filled with otherwise difficult-to-find information including: facts about the causes, symptoms, and diagnosis; a workbook formulated to help assess your condition and structure a program back to wellness; powerful and easy-to-use self help therapies, including detailed information on vitamins, minerals, and herbs, diet, menu plans and recipes, as well as the benefits of acupressure, yoga and exercise, deep breathing, and stress reduction; medical information and drug treatments.” [back cover]From Fatigued to Fantastic: A Manual for Moving Beyond Chronic Fatigue and Fibromyalgia. By Jacob Teitelbaum. Garden City Park, NY: Avery Publishing Group, 1996. 210 p. Paper. $11.95 U.S.
“This book examines many factors that may be responsible for the many conditions associated with CFS. It includes chapters on nutritional problems, adrenal insufficiency, hypothyroidism, hormonal imbalances, yeast overgrowth, sleep disorders, parasitic infections, and more. It also looks at the studies done on DHEA, magnesium, and malic acid. It provides instructions for physicians on the use of both natural and pharmacological supplements. The author, a medical doctor, has personal experience with CFS/CFIDS/FM.” [back cover]Living with M.E.: The Chronic/Post-viral Fatigue Syndrome. By Charles Shepherd. North Pomfret, VT: Trafalgar Square Books, 1999. 496 p. Paperback. $19.95 U.S.
Dr. Shepherd is the medical advisor to the National M.E. Association in England. [He has written] “an updated, comprehensive guide which proves much-needed information about M.E. [myalgic enciphalomyelitis]. It describes the symptoms, what triggers it and who can get it and also discusses additional problems such as disordered sleep, depression, pain in the joints and difficulties with eyes, ears, and balance.” [book review found at the web-site of Amazon.com, August 2000] Additionally, the author discusses on-going research, treatments, coping strategies, and practical issues.Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. By Hillary Johnson. New York: Crown Publishers, 1996. 720 p. Hardcover. $39.95 Cdn.
“A provocative expose describes how the American medical research establishment ignored and dismissed patients suffering from Chronic Fatigue Syndrome and the independent investigators who worked to solve the problem despite neglect and scientific bias.” [Editorial review from Booklist taken from the web-site of Amazon.com, August 2000] Written by a freelance journalist, the book is recommended by the National CFIDS Foundation Inc.A Parent’s Guide to CFIDS: How to be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction [Syndrome]. By David S. Bell, et al. Binghampton, NY: Haworth Medical Press, 1999. 160 p. Paper. $17.95 U.S.
“[The text serves as] an invaluable guide as you help your child deal with the frustration and loneliness that typically accompanies this illness and as you advocate for and support your child in school. This book is not about treating CFIDS, [but rather focuses] on a child’s educational and social development. There is an especially strong chapter that helps parents understand the feelings that a young person with CIFIDS experiences.” [book review found in The CFIDS Chronicle, May/June 1999, p.33] The authors and the lists of support organizations and education resources are American, but the general focus of children’s emotional needs during this illness are readily applicable to all parents, whatever the country.Running on Empty: the Complete Guide to Chronic Fatigue Syndrome (CFIDS). By Katrina Berne. Alameda, CA: Hunter House, 1995. 315 p. Paper. $14.95 U.S.
This text provides a clearly-written, comprehensive overview of CFIDS that can be utilized by clinicians and patients alike. Dr. Berne is a clinical psychologist who has CFIDS and has researched and specialized in the treatment of this illness since 1985. “Combining current medical knowledge of CFIDS with the results of patient interviews and entries from her personal journals, [the author] discusses its physiological, psychological, and social aspects.” [excerpt from book review written by American Medical Writers Association Journal found on page iii of the text]
Articles:“Fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome.” By Dan Buskila. Current Opinion in Rheumatology, March 2000, pp.113-23.
The author outlines major studies that have been carried out recently with regard to each syndrome. With regard to chronic fatigue syndrome, he cites thirty-one studies that have looked at the causes and possible treatment of this disorder and highlights their findings. This article would be of benefit to researchers or interested students.“New hope for chronic fatigue sufferers.” By Brenda Adderly. Better Nutrition, April 2000, pp.48-50, 52.
The article examines promising new therapies for chronic fatigue syndrome: the supplement NADH; the minerals…magnesium and calcium; the antioxidants…beta-carotene, Vitamins C and E, selenium, coenzyme Q10, and L-carnitine; herbs such as licorice, ginseng, and astralagus; and exercise. The author has written 13 books about health.“Chronic fatigue syndrome.” By Steven Reid, et.al. BMJ [British Medical Journal], January 29, 2000, pp.292-96.
This review provides a concise account of the current state of knowledge about (a) the background of chronic fatigue syndrome and (b) about the range of treatments offered by the medical establishment. The review is extracted from the second issue of Clinical Evidence (see: http://www.evidence.org).“Using vitamin B-12 for the management of CFS.” By Charles W. Lapp. The CFIDS Chronicle. November/December 1999, pp.14-16.
Based on findings published in medical journals in the late 80’s, the author began treating patients suffering with chronic fatigue syndrome with B-12 injections and he saw remarkable improvements. In this article, the doctor discusses his use of B-12 injections, offers a scientific explanation for its benefits, and provides recommended dosages. Dr. Lapp specializes in internal medicine and pediatrics.“Chronic fatigue syndrome: new insights and old ignorance.” By B. Evengard, R.S. Schacterle, and A.L. Komaroff. Journal of Internal Medicine. November 1999, pp.455-69.
Many persons with chronic fatigue syndrome describe an infectious onset but the link between infections and CFS remains uncertain. This article discusses the historical background of the disorder and goes on to discuss current issues and treatments.“Whatever happened to the Yuppie Flu?” By Peter Jaret. Health. May 1999, pp.114-16, 132-4, 136-8.
The article cites Dr. Paul Levine, an epidemiologist and expert on CFS who suggests that this condition may have a variety of causes, which infers a variety of treatments. The author looks back with several patients who were diagnosed in the mid-80’s and reviews their personal struggles and victories with this strange disease over the course of the last 14 years.“New directions in chronic fatigue syndrome.” By Carol S. Saunders. Patient Care. September 15, 1998, pp.101-3, 107-10.
Written in consultation with three professors of medicine, the author discusses strategies for treating the symptoms of CFS. These strategies include graduated exercise and cognitive behaviour therapy, as well as treatment for neurally mediated hypotension (often found in persons with CFS). Drug management of this disorder is also briefly discussed as is the prospect of recovery for this disorder.“Should you exercise? For PWCs, it’s an important but individual question.” By Patti Schmidt. The CFIDS Chronicle, May/June 1998, pp.17-19.
For a person with CFIDS (PWC), the most important issue is to listen to their own body and decide for themselves how much, and what kind of, exercise they can deal with. The value of exercise and the rationale for its use is discussed, as is the issue of individual choice.
Periodicals:The CFIDS Chronicle
Published quarterly by the Chronic Fatigue Immune Dysfunction Syndrome Association of America, P.O. Box 220398, Charlotte, NC 28222-0398. Tel: 1-800-442-3437, Fax: (704) 365-9755, E-mail (for subscriptions): membership@cfids.org, Internet homepage: http://www.cfids.org. The journal is free with membership which is $45.00 per year payable in U.S. funds.
Since 1988, the CFIDS Chronicle has published over 1000 articles by authors from all over the world on a wide range of topics about the nature of CIFIDS and the movement it has spawned. Authors include persons with CFIDS (PWCs), family members, support group leaders, pioneering CFIDS clinicians and researcher. Issues prior to 1989 are no longer available. The CFIDS Chronicle serves as a clearinghouse for information about chronic fatigue and immune dysfunction syndrome, also know as chronic fatigue syndrome and myalgic encephalomyelitis. The ideas expressed by each author or quoted individual are strictly his/her own and readers are encourage to consult their medical providers to discuss issues raised.
[Quoted from the web site http://www.cfids.org]. All articles published in the CFIDS Chronicle from 1999 to the present (and selected articles from 1996-1998) are available freely at http://www.cfids.org/archives/chronicle-issues.asp
Internet Resouces:
- Chronic Fatigue Immune Dysfunction Syndrome Association of America (CFIDS)
http://www.cfids.org
The Association acts as a central clearinghouse for information related to CFS and the website reflects this. General information about the disorder is included as is information about disability issues, research news, research summaries, issues relating to adolescents with CFS, and links to other online resources.
- The CFIDS/M.E. Information Website
http://www.cfids-me.org
This website is maintained by Mary Schweitzer who has been on medical leave (with CFS) from her job as an associate professor of history at Villanova University since 1995. The site is a treasure trove of links to hundreds of related websites… whether you are looking for information about the disease itself or you want to know about chat groups or ongoing research studies… this is the site to view.
- National ME/FM Action Network
http://www3.sympatico.ca/me-fm.action/main.html
The Networks offers support, advocacy, education and research into the many, varied anomalies connected with ME/FM. The website offers: information about the ongoing research into the illness; access to Quest, the organization’s bi-monthly newsletter; Children & Youth with ME/FM… an area where parents and teachers can receive information pertinent to the illness as it relates to adolescents; Naturopathy/Homeopathy/Self-help, a service for those who are interested in alternative medicine; a national roster of doctors and lawyers educated about this disorder; a guide on applying for disability pensions; and a bibliography of texts and reports written about ME and FM
This brief guide is intended to provide health information. It is a representative, rather than comprehensive list of organizations and publications on chronic fatigue syndrome. This guide does not imply recommendation of any treatment and should not be substituted for the advice of a health care provider.