M.E. & FM Manual --Main Page
Membership
Improvements and comments E-Mail Updated 97/08

14. Newsletters & Organizations

1) ** There are many organizations that can help you find information or resources on M.E. or F.M. Many of these groups produce monthly or quarterly newsletters to keep their membership informed on current research, new treatments, etc. {PO}{My suggestion is that you get the membership for your local organization first, then determine what your budget will allow for any other subscriptions}. Several organizations will allow you to purchase back issues of their newsletters; some will send you free copies of their newsletters if you are unable to pay for a subscription. Each of these organizations work hard at promoting the awareness of M.E. and F.M. If you call these organizations, remember that return calls are staffed by fellow sufferers, so please allow extra time for them to get back to you.

2)** Subscribing . You have many options to subscribe to these organizations: E-mail via Internet, fax with a subscription; phone with a charge card, or write to them.

3)** Advocacy Access. Phone #872- 1278; 1-800-663-1278.

4)**A.F.M.S.A. (American Fibromyalgia Syndrome Association) P.O. Box 9699 Bakersfield, CA USA 93389 A.F.M.S. Association quarterly newsletter, $35 annual membership fee.

5)** The Allergy and Environmental Health Association P.O. Box 871 Cambridge, Ontario N1R 5X9 #93009-11

6)** A.N.Z.M.E. (New Zealand) Inc. P.O. Box 36 307 Northcote Auckland New Zealand Subscription/membership fees are $41(Cdn.) per year, which includes the quarterly journal "Meeting-Place".

7)** The B.C. Allergy Association #877-2255.

8)** The B.C. Coalition of People with Disabilities #204, 456 West Broadway Vancouver, B.C. V5Y 1R3 Phone #875-0188/ fax #875-9227/ #1-800-663-1278 Annual membership fee of $10 includes the "Transition" magazine, 8 times yearly.

9)** B.C. Medical Association 1807 West 10th Vancouver, B.C. Phone #736-5551/ 1-800-665-2262.

10)** Canadian Chronic Fatigue Association 562 Ashfield Court Pickering, Ontario L1V 4Y3 (No response was received after I wrote letter to them)

11)** Canadian Mental Health Phone #1-800-268-0999, ext 32. They have a good booklet (free) that describes depression.

12)** CDC - National Centre for Disease Control and Prevention Division of Viral Diseases Building 6, Room 120 Atlanta, GA USA 30333

13)** CFIDS Association Inc. (Chronic Fatigue Immune Dysfunction Syndrome) P.O. Box 220398 Charlotte, N.C. U.S.A. 28222-0398 Phone #1-800-442-3437 or #1-900-988-2343 (recorded message $1/minute) Annual membership fee $35 US (This is the largest non-profit organization in the world promoting knowledge of M.E.) They have a separate phone line as well as a pamphlet designed especially for physicians. CFIDS Association produces The CFIDS Chronicle, the largest M.E. publication in the world, and represents over 23,000 members (Nov/93) a)** Support Network of America. The CFIDS Association has created a network for support group leaders and organizations. #940806-74. Support Network of America P.O. Box 220398 Charlotte, North Carolina USA 28222-0398.

14)**CFIDS Buyer's Club 1187 Coast Village Road, #1-280 Santa Barbara, CA USA 93108 Phone #1-800-366-6056. This organization is run by the CFIDS Association and sells vitamins at a discounted price, with all profits going to M.E. research.

15)** CFIDS Foundation 965 Mission Street #425 San Francisco, CA USA 94103 Phone (415) 882-9986 (no longer operating 95/08/23)

16)** CFIDS Pathfinder P.O. Box 2644 Kingston, MD USA 20891-2644 Phone #(301) 530-8624 CFIDS Pathfinder to Information is a compre-hensive collection of materials in a binder format, with an Addendum purchased separately. ($21, Addenda $12) #950102. This is a very useful up-dateable loose-leaf book that will explain how to gain access to computer bulletin boards on M.E./C.F.S., obtain theses, government documents and the veritable storehouse of information available to the medical and interested public. Highly recommended for all support groups, physicians, researchers, librarians and the general public interested in M.E./C.F.S.

17)** CFIDS Society International P.O. Box 230108 Portland, OR USA 97233 (No response was received after I wrote a letter to them)

18)** CFS DysPATCH 997 J Dodds Blvd, #811 Mt. Pleasant, Sc USA 29464-6119 (Phone (803) 881-0216) Cost is $17 per year, and includes the bi-monthly newsletter.

19)** CFS Foundation 10 Wild Partridge Court Greensboro, NC USA 27455

20)** CFS Youth Outreach (CYO) Send a self-addressed envelope to: CFS Youth Outreach c/o Sharon Walk 14 Shetland Road Florham Park, New Jersey USA 07932-1813. Donation of $10 appreciated. #94021 CFS Youth Outreach produces a quarterly newsletter with a penpal club, produced by a 19 year old for children with M.E.

21)** Chemical Hypersensitivity Association of Ontario Box 1250 Toronto, Ontario M4P 3E4 #93009-11

22)** Cheney Research Clinic 10620 Park Road, #234 Charlotte, NC USA 28210 Phone (704) 542-7444

23)** Children with CFIDS c/o Tara Allan 245 Spring Street, SW Concorde, NC USA 28025 #941102-72 $30 per year membership fee, quarterly newsletter.

24)** Council of Canadians With Disabilities, "A Voice of Our Own". (950603) #926 - 294 Portage Avenue Winnipeg, Manitoba R3C 0B9 Phone (204) 947-0303/ fax (204) 942-4625. Internet CCD@magic.mb.ca Produces a newsletter.

25)** DAWN Canada (Disabled Women's Network) #408 - 3637 Cambie Street Vancouver, B.C. V5Z 2X3 Phone #873-1564

26)** Ecological Health Alliance 1019 Lodge Avenue Victoria, B.C. V8X 3B1 Phone 384-8892 or 658-2914 #940807 An allergy, food and environmental health quarterly newsletter; $15 annual membership fee.

27)** Electronic Newsletters & Computers - refer to "Books, Videos and Computer Links", Chapter 12.

28)** Environmental Health Network California for Multiple Chemical Sensitivities

29)** Federal Health Department Medical Devices Hotline 1-800-267-9675 (Ontario)

30)** Fibromyalgia Society of B.C. (FMBC) P.O. Box 15455 Vancouver, B.C. V6B 5B2 phone #430-6643. Membership $20 per year. They have monthly information meetings, and produce a quarterly newsletter. Several informative books and videos are listed in the back of their newsletters. Produces 1,100 copies of their newsletter (95/10).

31)** Fibromyalgia Network 5700 Stockdale Hwy, #100 Bakersfield, CA USA 93309 Produce a quarterly newsletter

32)** Greensboro CFS Foundation Inc. 10 Wild Partidge CT Greensboro, NC USA 27455 Phone #1-800-597-4237 (Canada No, US ?)

33) ** Inflammatory Bowel Disease ?

34)** International Coalition of Long-term (10+) CFIDS/ME Patients. As you know, many articles and reports claim that people recover from this disease within 2 to 6 years. This organization is trying to obtain statistics on patients ill for longer than 10 years and want to hear from you who fall in that category. Please contact: Maggie McKenzie 171 Naubuc Avenue East Hartford, CT USA 06119 Phone (203) 56904091 or Robert Fontanetta 257 - 20 Hillside Avenue Floral Park, NY USA 11004 Phone (718) 347-4509

35)** International Federation of M.E. Association (IFMEA) collects and disseminates medical information. c/o Dr. Goudsmit, director, 23 Melbourne Road Teddington, Middex Tw11 9QX United Kingdom (Currently this organization sends information only to physicians)

36)** Journal of CFS or the Journal of Muscular Skeletal Pain #940802-3; #94017-4. This is the first peer-reviewed multidisciplinary journal for Chronic Fatigue Syndrome. Cost is $28 (US) per year (includes four issues). They have a large listing of other books they produce listed in the back of each issue. Both journals are published by: Haworth Medical Press 10 Alice Street Binghamton, New York USA 13904-1580 Phone #1-800-342-9678/ fax #1-607-722-6362

37)** Lyme Borreliosis Society P.O. Box 91535 West Vancouver, B.C. V5K 3P2

38)** Lupus of America Phone #1- 800-558-0121

39)** M.E. Canada #400 - 246 Queen Street Ottawa, Ontario K1P 5E4 fax #(613) 567-0614/office (613) 563-1565. Internet access tharvey@hookup.net Compuserve access 73203.1162@compuserve.com Annual membership fee of $35 includes subscription to the monthly "Messenger" newsletter.

40)** M.E./F.M. Action Network 3836 Carling Avenue, Hwy 17B Nepean, Ontario K2H 7V2 Phone (613) 829-6667 Contact Person: Lydia Nielson Produces a very good condensed newsletter 6 times per year.

41)** M.E. Ontario 90 Sheppard Avenue East Suite 108 North York, Ontario M2N 3A1 (416) 222-8820/ fax (416) 224-2181

42)** Medical Library 8th & Hemlock Vancouver, B.C.

43)** MESH (M.E. Self Help) Ottawa c/o Hintonberg Community Centre 1064 Wellington Ottawa, Ontario K1Y 2Y3

44)** The M.E. Society of B.C. (M.E.B.C.) P.O. Box 462, 916 W. Broadway Vancouver, B.C. V5Z 1K7 Phone (604) 526-3993 $15 annual membership fee - M.E.B.C. puts on seminars (several are on video in the "M.E./F.M. Library Materials"), produces a quarterly M.E. newsletters, advertises, supplies information packages for your doctor and for CPP applications, promotes awareness of M.E. M.E.B.C. helps the 37 support groups in B.C.

45)** The Myalgic Encephalomyelitis/Fibromyalgia Society of Alberta (formerly M.E. Society of Calgary) Box 30402 1323N 6455 MacLeod Trail, SW Calgary, Alberta T2H 2W2 Phone #(403) 248-7773/ fax #(403) 260-7508 Annual membership fee is $12.00, which includes the quarterly newsletter "M.E. Update".

46)** M.E. Society of Edmonton Box 465, Suite 21 1045 Jasper Avenue Edmonton, Alberta T5J 3S2 Phone (403) 944-0809 Quarterly newsletter "You M.E. & Us".

47)** M.E. Support Network 97 Haig Avenue Winnipeg, Manitoba R2M OE2 Phone (204) 237-8038

48)** M.E. Victoria RPO Fairfield Plaza P.O. Box 50032 Victoria, B.C. V8K 5L8 Phone # 975-3100 Toll free for B.C.

49)** Migraine Foundation, 120 Carlton Street, Suite 210, Toronto, Ontario M5A 4K2 Canada #941003-2

50)** Mood Disorder Support groups. Phone #873-0103. There are currently 40 support groups in B.C. for this condition.

51)** Myalgic Encephalomyelitis Association Stanhope House High Street, Stanford le Hope Essex SS17 OHA United Kingdom (0375) 642466/ fax #(0375) 360256 Annual membership fee for applicants outside the U.K. is 20 pounds in sterling cheque or Bank Draft.

52)** NACPAC (North American Chronic Pain Association) Dr. Rick Edwards #105 - 150 Central Park Drive Brampton, Ontario L6T 2T9 (Phone) (905) 793-5230/ fax (905) 793-8781/ 1-800-616- PAIN

53)** National Chronic Fatigue Syndrome & Fibromyalgia Association (NCFSFA) 3521 Broadway, Suite 222 Kansas, MO USA 64111 Phone #(404) 639-1388 or (404) 332-4557 (816) 931-4777

54)** National Information Centre for Children and Youth With Disabilities (NICCHY) NICCHY P.O. Box 1492 Washington D.C. USA 20013 NICCHY provides information for parents and children with M.E. & F.M. Phone #1-800-999-5599.

55)** National Institute of Allergy & Infectious Diseases (NIAID) Building 10, Room 7A-50 Bethesda, MD USA 20892 Phone (301) 496-5717

56)** Newsletter Exchange Program: LINDO COMMONS Indiana CFS Association 810 N. Bancroft Indianapolis, Indiana 46201 USA Phone (317) 252-9223.

57)** The Nightingale Research Foundation 383 Danforth Avenue Ottawa, Ontario K2A 0E1 (613) 728-9643 $35 annual fee

58)** Northern Ontario Fibromyalgia Network Inc. 800 LaSalle Blvd, Suite 300 Sudbury, Ontario P3A 4V4 Phone #(705) 560-4936

59)** Nutrition Hotline, Phone #1- 800-633-0445 or (913) 588-5350. This is a grant-operated information line on nutrition and supplements operated by the University of Kansas Medical Centre, Kansas City. It is open 10 am to 5 pm Central time #94027-43.

60)** Ontario Fibromyalgia Association 393 University Avenue Suite 1701 Toronto, Ontario M5G 1E6 phone 416 979-7288 fax 416 979-8366 Tender Points published quarterly $17.00

61)** Pharmaceutical Association of Canada provides a free newsletter, medical record kit, and information on drugs. Phone 1-800-363-0203.

62)**P.M.R.F. 207 West Hastings Street, Suite 510 Vancouver, B.C. V6B 1H7 (604) 684-4148/ fax (604) 684-6247 Email MWHITE@UNIXG.UBC.CA Contact Guy Innis (604) 684-4148. Physical Medicine Research Foundation (PMRF) Branch in Vancouver has monthly support group meetings.

63)** Post-Polio Awareness Society of B.C. P.O. Box 6579, Depot #1 Victoria, B.C. V8P 5N7 Office (604) 477-8244/ Editor (604) 477-6546 $10 per year membership fee, quarterly newsletter. This organization has 40 support groups in B.C.

64)** Rescind Inc. 127 West Putnam Avenue, #170 5 Greenwich, CT USA 06830 Fax #(203) 531-4135 Internet E-Mail m.straznitsk@genie.geis.com

65)** Seattle F.M. Group P.O. Box 77373 Seattle, WA 98177-0373 Phone (206) 362-2310 Produce a quarterly newsletter.

66)** Self-Help Resources Association (SHRA) #303, 1212 West Broadway Vancouver, B.C. V6H 3V1 SHRA produces a quarterly newsletter, and helps train support group leaders or helpers, providing seminars, support and resource materials that are common to the support groups, (eg a disability brochure) so that each group or association doesn't "re-invent the wheel".

67)** Sleep Disorders of B.C. P.O. Box 80127 Burnaby, B.C. V5H 3X5

68)** UBC Medical Library.

69)** Well Spouse Foundation P.O. Box 2887 San Diego, CA 92198 produces a newsletter 6 times per year, with an annual membership fee of $15. They have 2,800 members. #93022-34
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End of Chapter

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