M.E. & FM Manual --Main Page
Updated 97/02

12. Books, Videos & Computer Links

1)** Books: The following is a list which might be helpful to those who want to know more. #92014-11. Some bookstores have computer records of M.E. & F.M. books. Many bookstores have access to entire book collections throughout the world. Ask the clerk to give you a printout of all the books on M.E. and F.M. that are available; make sure to include other names for the illness (such as Chronic Fatigue Syndrome, Fibrositis, etc.).

a)American Fibromyalgia Association has a package of 450 Scientific abstracts for $30 #950603-3

b)** "Alternative Medicine, The Definitive Guide" by Helene Meurer, compiled by the Burton Goldberg Group, encyclopedia- sized hardcover (1068pp) $89.95 This is a reference book, meant for those who want to use methods other than drugs. Treat- ments covered include acupuncture, chiropractic, diet, herbal medicine, homeopathy, bodywork, cell therapy, biological dentistry, etc. #940901

c)**"Arch-Type - the magazine that defends the rights of people with disabilities" Write to Advocacy Resource Centre for the Handicapped (ARCH), 40 Orchard View Blvd, Suite 255, Toronto, Ontario M4R 1B9 (6 issues per year/$15) #941003-2.

d)**"Arthritis Helpbook, A Tested Self-Management Program for Coping With Your Arthritis", by Kate Lorig, R.N., Dr. P.H., and James F. Fries, M.D. 1990, (245pp) $13.95 Addison-Wesley Publishing Co. Inc.

e)** "Better Recovery from Viral Illness", by Dr. Darrel Ho Yen, Dodona Books publisher.

f)** "Canary and Chronic Fatigue, The" by Majid Ali, MD (Grade B) (568pp) $23.00 Lifespan Press. Phone #1- 800-366-6056. #950103-16

g)** "CFIDS Chronicle" ($40 yearly subscription). This journal/magazine is published quarterly by the CFIDS Association of America, P.O. Box 220398, Charlotte NC, USA 28222-0398. Phone #1-800-442-3437. The back page of each issue of "The CFIDS Chronicle" contains a large listing of articles and videos that are available to the members of the Association. Also listed is the CFIDS Information Line #1-900-/896-CFIDS (1-900- 896-2343). There is a per-minute charge for this call. Information available covers monthly updates, diagnosis, treatment, research updates, related health issues, CFIDS in children, nutritional therapies, and patient profiles. #940806-95

h)** "CFIDS, An Owner's Manual", $20 U.S. funds) available through BBNS Publishers, Nancy Smith, P.O. Box 1343, Randolph, MA 02368 USA #(617) 961-2042. #94015-2

i)**"Chronic Fatigue, The Silent Epidemic", by William Vayda 1991 Simon & Schuster Australia, 20 Barcoo Street, East Roseville, NSW 2069

j)**"Chronic Fatigue Syndrome Cookbook, The" by Mary Hale and Chris Miller, Carol Publishing Group, 1994 (218pp) $19.00 This book is filled with easy-to-follow, gourmet recipes designed to combat the monotony associated with recommended C.F.S., allergy and immune- compromised diets. Contains information on restaurant dining, and a list of foods to avoid, as well as recommendations on acceptable foods for days when persons with CFIDS are too ill to cook #940806-92

k)**"CFIDS, The Disease of a Thousand Names" by Dr. David S. Bell, M.D., Polland Publications USA (copies are available by sending a money order for $22.45 US to CFIDS Association.)

l)** "CFIDS Lite", by Katrina H. Berne Phd., BHB Communications, Arizona ($10 US through CFIDS Association)

m)** "Chronic Fatigue Syndrome, A Victim's Guide to Understanding, Treating and Coping with This Debilitating Illness", by Charles Fisher, Stephen Straus MD, Paul Cheney MD, PHD, and James Oleske MD, Warner Books, USA

n)**"Chronic Fatigue Syndrome and The Yeast Connection", by William G. Crook, M.D., 1992 (Grade D) Professional Books Inc., Box 3246 Jackson, Tenn. (399pp) $21.95

o)** "CFS, The Hidden Epidemic" by Dr. Jesse A. Stoff & Pellegrino, C.R., Toronto: Harper Perinial, 1992. (304pp) $13.95

p)** "Chronic Fatigue Syndromes: The Limbic Hypothesis, The Medical Neurobiology of Somatic Disorders", Dr. Jay Goldstein. Softback $50 (US) Hardback $90 (US). Mailing costs are extra. This useful textbook can be ordered from The Haworth Medical Press, 10 Alice Street, Binghamton, N.Y. 13904. This publication reviews pharmacological treatments of M.E./C.F.S. It is a short and easily readable book for those interested in the basis for neuropharacological treatment of M.E./C.F.S.

q)** "Chronic Fatigue Syndrome, The Struggle for Health", by Jay Goldstein MD. (Available from Chronic Fatigue Syndrome Institute, 436 N.Roxbury Drive, Suite 110, Beverley Hills, CA for $19 US)

r)**"Chronic Muscle Pain Syndrome" by Paul Davidson, M.D. 1989 Random House Inc., 201 East 50th Street, New York, N.Y. (196pp) $5.95

s)**"Clinical & Scientific Basis of M.E./ C.F.S., The" - (Grade B) (850pp) $80.00 This encyclopedia consists of research material by 80 M.E. specialists from around the world. If you persuade a library to purchase this book, you will receive a free copy of this encyclopedia, courtesy of Nightingale Research Foundation. #93001

t)** "Doctor's Guide to C.F.S.", by David Bell, Addison-Wesley Publishing Group, 1994 (275pp) Written by a leading expert on C.F.I.D.S. and pediatrician, this book describes the diagnosis and prognosis of C.F.I.D.S. and various treatment options. This book also documents the tremendous strides being made in the search for the cause of and cure for C.F.I.D.S. and contains an excellent chapter on C.F.I.D.S. in children. #940806-92

u)** "Doctor's Vitamin and Mineral Encyclopedia, The", by Sheldon Saul Hendler, MD, PHD. (Grade B) This article contains a list of 200 vitamins, minerals, amino-acids, and herbs, as well as research, dosages, and suggestions for M.E. patients. #91005-17

v)** "Emotional Pharmacy - How Mood-Altering & Psychoactive Drugs Work" by Roberta Morgan, 1988 (221pp) $11.95 The Body Press, A Division of Price Stern Sloan, Inc., 360 N. LaCienega Blvd., Los Angeles, CA 90048

w)**"Essential Guide To Understanding Migraine and Its Treatment, The" by Valerie South, RN (Director, Communications of The Migraine Foundation) Advance order - send $14.95 (plus $2.00 shipping) with your name and complete mailing address to: The Migraine Foundation, 120 Carlton Street, Suite 210, Toronto, Ontario M5A 4K2. Endorsed by The Migraine Foundation and The Canadian Medical Association. #941003-2

x)**"Facts About C.F.S., The" 1995 (Grade C-) This is a free booklet from the Centre for Disease Control (a revision of their 1993 booklet) which contains the 1994 C.D.C. diagnosing criteria for M.E. (see "Diagnosing" chapter). It can be obtained by writing to Ms. Dottie Knight at C.D.C. 1600 Cliffton Road, Mail stop A- 15, Atlanta G.A. 30333 Phone #(404) 639- 1338. #941005

y)** "Fibromyalgia: Managing the Pain" by Mark Pellegrino, M.D., (GradeA) (87pp) $14.95 Anadem Publishing, Columbus OH Phone #1-800- 633-0055. A good over-all view of FM.

z)** "Guide to Prescription and Over The Counter Drugs" Canadian Medical Association, Reader's Digest.

aa)** "Handbook of Psychiatric Drugs, The - A Consumer's Guide..." by Bernard Salzman, M.D., D.A.B.P.N. 1991 (261pp) $15.95 Henry Holt and Co. Inc., 115 West 18th Street, New York, New York 10011

bb)** "Hope and Help for Chronic Fatigue Syndrome", by Karen Feiden, 1990, New York Prentice Hall Press, USA (send $18 US to CFIDS Association)

cc)** "Immune System Handbook" by C. Day, (53pp) $14.95.

dd)** "Joy of Health, The" by Zoltan Rona, MD MSc (252pp) $16.95.

ee)** "Learning To Live With CFS", by Edwin Blair Boles, 1990 $4.99 Bantam Doubleday Dell Publishing Group Inc., 666 Fifth Avenue, New York, New York, 10103-117

ff)** "Life In The Slow Lane, Coping With Chronic Fatigue Syndrome", by Terri Mosely Wood, R.N.,1989 (175pp) $9.95 Woodshed Press Inc. 605 Vantrease Road, Madison, Tenn.

gg)** "Living Well - A 12 Step Response to Chronic Illness & Disability", by Martha Cleveland (available through Serenity Bookshop, Vancouver)

hh)** "Living with C.F.S.: A Personal Story of the Struggle for Recovery" by Timothy P. Kenny, Thunder's Mouth, 1994 (224pp) $12.95 An intimate account of Mr. Kenn's battle with CFIDS. Mr. Kenny describes the pain associated with his loss of livelihood, impaired physical and mental functioning and the strain on his marriage and friendships, while maintaining hope for an eventual recovery and return to his former life as a TV broadcaster. This book is available through the CFIDS Foundation. #940806-92; #940806-75; #940804-8

ii)** "Living with Chronic Fatigue, New Strategies For Coping With and Conquering CFS", by Susan Conant, Ed.D., 1990 (138pp) $11.95 Taylor Publishing Co. 1550 West Mockingbird Lane, Dallas, Texas

jj)** "Living With Chronic Illness; Days of Patience and Passion", by Cheri Register, 1987 (302pp) $12.95 Bantam Books

kk)** "Living with M.E., a Self-Help Guide", by Dr. Charles Shepherd, Cedar (England) (Grade B) 1992 (Send $15 US to CFIDS Association) Dr. Shepherd has suffered from M.E. for 12 years, and in this book he presents us with a comprehensive, well researched and clear account of this disease. #940805-28

ll)** "M.E. & F.M. Library Materials". Available at 14 libraries in B.C. Refer to Chapter 2 of this manual.

mm)** "M.E. And You - A Survivor's Guide to Post Viral Fatigue Syndrome", by Steve Wilkinson, l988, Thorsons Publishers, England

nn)** "M.E. - Post-viral Fatigue Syndrome - How to Live With It" by Dr. Anne MacIntyre (Grade B) (331pp) Thorsons, London England. #950202-21

oo)** "M.E. What Is It? Have You Got It? How To Get Better", by Mike Franklin & Jane Sullivan, Century Hutinson, England 1989

pp)** "Medical Tests and Diagnostic Procedures, A Patient's Guide to Just What the Doctor Ordered", by Philip Shtasel, D.O., F.A.O.C.R., 1990 (296pp) $14.95 Harper Collins Publishers Inc., 10 East 53rd Street, New York, N.Y.

qq)** "Mile High Staircase", by Toni Jeffreys, Waaiake Wordsmiths, P.O. Box 35429, Brown's Bay, Auckland 10, New Zealand (Available at Vancouver Public Library)

rr)** "Miracle Nutrient CoEnzyme Q10, The" 1987 (219pp) $4.95 Bantam Book, Inc. 666 Fifth Avenue, New York, New York 10103

ss)** "Music Appreciation" by Floyd Skloot. University Press of Florida, 1994 (105pp) $11.00 The first full-length collection of poems by Skloot, who has been disabled by CFIDS since 1988.

tt)** "Myalgic Encephalomyelitis and Post Viral Fatigue States, The Saga of Royal Free Disease", Melvin Ramsay MA., MD.

uu)** "Never Be Tired Again, The Proven Nutrition, Fitness, and Lifestyle Program That Can Triple Your Energy Level In Just Seven Days", by David C. Gardner and Grace Joely Beatty, 1988 (352pp) $10.00 Harper & Row Publishers, 10 East 53rd Street, New York, N.Y.

vv)** "Oxygen, Oxygen, Oxygen" by K.W. Donsbach (80pp) $5.95 Alive Books, P.O. Box 80055 Burnaby, B.C. V5H 3X1

ww)** "Peace, Love, & Healing- Bodymind Communications and the path to self-healing: an exploration", by Bernie S. Siegel, M.D., Harper and Row Publishers

xx)** "Protect Yourself From Lyme Disease" by Diana Benzaia, 1989 Bantam Books, NY NY (118pp) $5.50

yy)** "Recovering From Chronic Fatigue Syndrome: A Guide to Self-Empowerment" by William Collinge, Putnam/Perigee, 1993 (Grade C-) $18.50 CFIDS Associa-tion, phone #1-800-442-3437; Audio tapes Dr. Collinge, phone #1-800-745-1837. Dr. Collinge details his approach to healing. This book teaches M.E. patients to take control of their illness and to help themselves find the road to recovery. Excerpt: "If, on the other hand, recovery means re-establishing a sense of equilibrium, control, harmony and quality in your life, then your recovery is desirable and possible". #93031; #93018-50; #940806-92

zz)** "Review of Mainstream CFIDS Research in the USA 1990 through June 1992" by Kendra Dayger, BS MS, (third printing 1994) (271pp) $22 US, including postage. The book documents consensus scientific opinion of over 30 well-known researches. It is still available but due to its popularity, its author was unable to say how much longer. Send a cheque, payable to CFIDS- JCC, and send to CFIDS Rochester Research Project, 1200 Edgewood Avenue, Dept. NC, Rochester, NY 14618 USA #93031-2; #940806-92

aaa)** "Right Now: Maintaining a Creative Spirit While Home Bound & Ill." by Susan Dion (Grade B) (90pp) Ms. Dion has M.E. and wrote a guide on how to cope with the illness. Send a self- addressed, stamped 6"x 9"envelope with $3 for postage, or 3 ½" diskette to Susan Dion, 432 Ives Avenue, Carneys Point, New Jersey 08069 #941005-19

bbb)** "Running on Empty" by Catrina H. Berne, Phd, 1992 (Grade B) (298pp) $13.95 U.S. publisher Hunter House, 2200 Central Avenue, Suite 202, Alameda, CA 94501 Dr. Berne draws on her experience as a person with C.F.S., CFIDS therapist and speaker in writing this thesis on what little is known about CFIDS. She addresses nearly every aspect of recognizing and living with CFIDS. This is an important resource manual. #93016-58; #940806-92

ccc)** "Sick & Tired of Being Sick & Tired", by Neil Solomon, MD, Ph.D. 1989 (289pp) $18.95 Wynwood Press, New York, N.Y.

ddd)** "201 Things To Do While You're Getting Better" by Erica Levy Klein, 1993 (266pp) $16.95 Chronimed Publishing, P.O. Box 47945, Minneapolis, MN 55447-9727

eee)** "Symptoms & Solutions - How To Tell When Your Ailments Are Misdiagnosed - And What To Do About It" by Jay Goldstein M.D., 1991 (232pp) $5.99 Pharos Books, 200 Park Avenue, New York, New York 10166

fff)** "Tired All The Time; How To Regain Your Lost Energy", by Ronald L. Hoffman, M.D. 1993, (234 pp) $21.00 Poseidon Press, Simon & Schuster Building, Rockefeller Centre, 1230 Avenue of the Americas, New York, New York 10020

ggg)** "Understanding M.E.: A Patient's Guide" 1991, Smith, David G. London: Robinson

hhh)** "Understanding, Treating, and Living With CFIDS" 1994, Adison-Wesly, $26.95

iii)** "Wellness Daybook: The Personal Health Management Book" by Emilia Pisani, Boston MA, DesignData, 1993 $19.45 US This notebook is divided into six sections: your health profile, talking to your health-care provider, taking your medicine, the daybook, health information resources, and the daybook accessory pages. It is a handy place to track health information. There are places to note the date, your symptoms, any questions and their answers, name of medications you are taking, dosage instructions and side effects, etc. #940806-75

jjj)** "What You Need To Know About Psychiatric Drugs" by Stuart C. Yudofsky, M.D., Robert E. Hales, M.D., and Tom Ferguson, M.D. ,1991 (592pp) $17.50 Ballantine Books, NY NY.

kkk)** "When I Am Weak" by Jacki Schirmer (Grade B) (160pp) Open Book Publishers, 205 Halifax Street, Adelaide, South Australia, 5000. One teenager's account of her struggle with M.E.

lll)** "When Muscle Pain Won't Go Away" by Gayle Backstrom, $23.00 Taylor Publishing

mmm)** "Why M.E.?" by Dr. Belinda Dawes & Dr. Damien Downing, Grafton Books (Collins) England.

nnn)** "Yeast Connection Cookbook; A Guide to Good Nutrition and Better Health", by William G. Crook, M.D., and Marjorie Hurt Jones, R.N., 1989 (379pp) $7.99 Professional Books Inc. 681 Skyline Drive, Jackson, Tenn

2)** VIDEOS


a)** "CFIDS Chronicle". At the back of each issue of this journal/magazine is a list of videos available to members of CFIDS Association of America. #940806

b)** "Chronic Fatigue Syndrome: A Real Disease" featuring Dr. Charles Lapp (suggested donation of $25 to Greensboro CFS Foundation, 10 Wild Patridge Court, Greensboro, NC 27455- 2715) This 90-minute video contains some of the most complete, up-to-date and comprehensive information on CFIDS. Dr. Lapp explains how to diagnose CFS, including the physical findings to look for and the abnormalities that are more likely to show up, and provides symptomatic treatment suggestions to the doctor and the patient. All aspects of the disease are covered: what is known, what is being discovered and what researchers have yet to learn. #940806-76; #940806-85.

c)** "Chronic Fatigue Syndrome: For Those Who Care" by Katrina H. Berne. An audiotape for friends and family of M.E. patients. Describes CFS in terms everyone can understand and offers communicating and coping strategies that serve to affirm to both parties in the relationship.#940806-92

d)** "CFS in Children" with Michael J. Goldberg, MD (75 mins). $25 donation to Greensboro CFS Foundation #940806-85

e)** "CFS: Unraveling the Mystery", by CNN's Newsource. An excellent videotape for convincing the sceptics that CFIDS is a real illness. Produced in 1991, this tape provides an overall description of CFIDS and its possible causes and symptomatic treatments. #940806-92

f)** "Living Hell: The Real World of Chronic Fatigue Syndrome." (56 minutes) (Grade A) Available from CFIDS Foundation #1-800- 577-4747. An emotional exposure of the tragedy of CFIDS, this videotape explores the history, politics, science and emerging under-tanding of CFIDS. #940806-92

g)** "Macrobiotics - Nature's Healing Foods" with Tonia Hugus, MD (2 hrs) Available through Greensboro CFS Foundation. #940806-85

h)** "M.E./F.M. Library Materials" Index at the back of this manual contains a list of videos that are available in several libraries throughout B.C. (See Chapter 2, "M.E./ .M. Library Materials" for further information)

i)** "Recognition, Diagnosis & Treatment of CFS" with Dr. Charles W. Lapp, MD (50 Min) available through Greensboro CFS Foundation, 10 Partridge Court, Dept. NC Greensboro, NC 27455. #940806-85

j)** "U.S. & British Research Comparisons" with Dr. Byron Hyde, MD (2 hrs) Available through Greensboro CFS Foundation. #940806-85

k)** "Wedding Gift, The" (Grade B) (90 minutes) available at video stores. This is a feature film released in July, 1994 by Miramax, about Diana Longden, a woman with M.E. #941005-9

3)** COMPUTER LINKS


a) ** Public libraries have computers available for your use for Word Processing and other tasks, as well as video and audio tapes, and software for training you quickly on how to use some of those software packages. They also have available CD Roms, which have a large volume of medical data information (eg prescription, doctor's reports, therapies, descriptions of illnesses etc).

b)** Many link providers have free access to bulletin boards for information on M.E. and F.M., including free connections to Internet, a world-wide information network. (1)** Internet Connection. CFS-M.E. @sjuvm.stjohns.edu

c)** CFIDS Chronicle (#941005-2) E-mail messages on CompuServe and Internet Networks at 71222.2463 @ Compu-Serve.com (71222,2463 on CompuServe) This is for general letters, "Ask the Doctor Questions", and letters to the editor.

d)** CFS - News Electronic Newsletter. Obtained by sending Internet e-mail to: CFS -News @ list.nih.gov

e)** Commercial Internet and Bulletin Board providers. The following have M.E. & F.M. discussions, and offer free soft-ware with one month's trial, then there is a monthly fee and small hourly charge: (1)** CompuServe Phone #1-800-848-8990. The information CompuServe CFIDS Support Area cfs/cfids/fms section (16). To find the section on CompuServe for CFIDS/FM, issue the command GO GOODHEALTH and enter section 16. #941005-53 (2)** Prodigy 1- 800-776-3449 (3)** GEnie 1-800- 638-9636

f)** Electronic CFS/ME Resources Guide #941008, discussed in #941101-3, #941005-53. A free pamphlet describing where to find CFIDS discussions groups, information files, and news sources that are on various computer networks including Fidonet, Internet, CompServe, Prodigy, GEnie, America Online, Usenet and Free-Net. To get the newly revised edition of the CFS/ME Resources guide, send a self- addressed envelope to: CFS/ME Computer Networking Project 3332 McCarthy Road P.O. Box 37045 Ottawa, Ontario K1V 0W0. The U.S. address is: P.O. Box 11347 Washington, D.C. USA 20008-0547 Internet 328@freenet.carleton.ca" #93005-6 Through Internet, E-mail request to cfs/me@sjuvm. stjohns.edu or dial into the Project ENABLE BBS at 304/759/0727 and go to file area 23 and download filename CFS-NET.TXT.

g)** Free Bulletin Boards and World Wide Web Sites. (1)** Health & Fitness Forum (good health) CFIDS Info #505-898-4635 (2)** Marc Fluks CFS page: http://www.astro.uva.nl/fluks/ me.tml (3)** Sandy Shaw CFS/ME Reference page: http://www.ncf.carleton.ca/ip/socialservices/cfseir/CFSEIR.HP.html (4)** Roger Burns CFS-NEWS page http://metro.turnpike.net/C/CFS- news (5)** URL's (Universal Resource Locators) of the USA National Institute of Health Guide - The guide itself: http://www.med.nyu.edu/nih- guide.html (6)** Computer Alternative: Bulletin Board Service #430-8080

h)** M.E. Canada is trying to have medical information available on the Internet.

i)** The "M.E./F.M. Manual" Table of Contents, Index, Books and organizations are now available on the Internet. I have an E-mail address for your suggestions on improvements and questions. The full document is too large at 3 megs, and heavily formated to be placed on the Web.
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M.E. & FM Manual --Main Page
Updated 97/02