NATIONAL AND INTERNATIONAL CFS/ME ORGANIZATIONS
WEBSITES WITH LISTS OF USEFUL ORGANIZATIONS
CFS Knowledge Center: comprehensive international links:http://cfsknowledgecenter.com/worldwide-links.php
The CFS Report: links page: http://www.cfidsreport.com/Links.htm
Alliance for Myalgic Encephalomyelitis links page: http://www.name-us.org/Links.htm
Fibromyalgia Network links page: http://www.fmnetnews.com/coping-resources/links
INTERNATIONAL AND TRANSNATIONAL ORGANIZATIONS
The International Association for CFS/ME (IACFS/ME)
27 N. Wacker Drive Suite 416
Chicago, IL 60606
Phone: (847) 258-7248
Fax: (847) 579-0975
Email : [email protected]
Website:http://www.iacfsme.org/
The IACFS/ME is a non-profit international organization geared towards the professional community. The mission of the IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to CFS, ME and fibromyalgia (FM) research, patient care and treatment. The annual fee for Regular Professional Membership is $100 with a two year membership fee of $150. The fee for a Lifetime Professional Membership is $1,000. Associate Membership is for students, patients and their families, and other interested individuals. The annual fee for Associate Membership is $40 with a two-year membership fee of $60.
The IACFS/ME publishes a peer review online journal, the Bulletin of the IACFS/ME, which accepts original research
papers, case reports, short notes, reviews of the literature, and book reviews. Letters to the Editor are also welcome. Abstracts are available without charge online.
The IACFS/ME holds a yearly conference.
The Worldwide Patient Alliance
Website:http://mcwpa.org/ (link not working)
"The grassroots ME/CFS Worldwide Patient Alliance formed in 2010 because of an increasing demand for sufferers to be empowered and have greater influence. For too long, the public and patients have been left out of the ME/CFS debates, yet they are the main ones impacted. One of the primary aims of the MCWPA is to enable sufferers of myalgic encephalomyelitis/chronic fatigue syndrome to make public statements concerning inadequacies in government agencies, lack of research cooperation and ignorance of their illness.”
EUROPE
European ME Alliance
Website:http://www.euro-me.org/
The European ME Alliance is a collaboration of ME support charities and organizations in Europe which intend to provide a common view and the scientific facts regarding the neurological illness myalgic encephalomyelitis (ME/CFS). Member countries include: Belgium, Denmark, Germany, Holland, Ireland, Italy, Norway, Spain, Sweden, Switzerland and the U.K.
UNITED STATES - NATIONAL
Solve CFS Initiative (formerly The CFIDS Association of America)
350 N Glendale Avenue
Suite B #368
Glendale, CA 91206
Phone: 704-364-0016
Email:[email protected]
Current Website: http://solvecfs.org/
"Our mission is to make ME/CFS widely understood, diagnosable, and treatable. We will do this by stimulating participatory, patient centered research aimed at the early detection, objective diagnosis and effective treatment of ME/CFS through expanded public, private and commercial investment."
“The organization has a monthly e-newsletter, Research 1st, as well as a print publication, the Chronicle, which comes out three times a year. Both publications contain articles on research developments, public policy and media reports, personal stories and a wealth of information vital to people living with CFS. Archived issues are available on the website in an easy-to-read digital publishing format. The organization also offers a free webinar series and has a vibrant social media community, where patients can stay connected and share information with one another."
The National CFIDS Foundation
103 Aletha Road
Needham, MA 02492
Phone: (781) 449-3535
Fax: (781) 449-8606
E-mail:[email protected]
Website:http://www.ncf-net.org/
The National CFIDS Foundation is a national non-profit organization founded in 1997. The Foundation's objective is to fund research to find a cause, expedite treatments and eventually a cure, as well as providing information, education, and support to people who have CFIDS (chronic fatigue and immune dysfunction syndrome also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and many other names).
The National CFIDS Foundation's dues are $30/year. (Waivers are available upon request.) The Foundation publishes a quarterly newsletter, The National Forum. Selected articles from back issues and research updates are available on their website.
PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy)
PANDORA Org, Inc.
3209 Charlesgate Ave. S.W.
Wyoming, MI 49509
Phone: (231) 360-6830
Website: http://www.pandoraorg.net/
PANDORA is a grassroots advocacy organization that promotes awareness of ME/CFS, Fibromyalgia, Gulf War illnesses (GWI), multiple chemical sensitivities (MCS) and chronic Lyme disease. PANDORA cooperates with other patient organizations to advocate for physician education,increased government-funded research and government policies that make advancement in improving patients' quality of life.
UNITED STATES – RESEARCH
Whittemore Peterson Institute
University of Nevada Reno MS 0552
1664 N. Virginia St.
Reno, NV 89557-0552
Phone: (775) 682-8250
Fax: (775) 682-8258
Email:[email protected]
Website:http://www.wpinstitute.org/
“The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective
treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.”
Open Medicine Foundation
29302 Laro Drive
Agoura Hills, CA 91301 USA
Phone: 650-242-8669
Email: [email protected]
Website: https://www.omf.ngo/
"The Open Medicine Foundation is spearheading neuro-immune disease research that follows patterns of success and benefits from collaborating with leading scientists and clinicians from around the globe. These experts bring to our foundation their expertise in immunology, virology, genomics, informatics, molecular biology, epidemiology, infectious disease, oncology, pathology and clinical medicine. The current focus is on ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), with the expectation that discoveries in this disease will bring answers to other diseases that share some of the symptoms."
Simmaron Research Foundation
948 Incline Way
Incline Village, NV 89451Phone: (775) 298-0030
Fax: (775) 298-0031
Email: [email protected]
Website: http://simmaronresearch.org/
"Simmaron Research is a nonprofit organization dedicated to advancing scientific research, potentially leading to the discovery of diagnostic markers and effective treatments that will ultimately improve the quality of life for people suffering from CFS/ME and related neuroimmune disorders." Simmaron is an ambitious international research collaboration between Dr. Peterson, Griffith University (Australia),Wisconsin Viral Research Group, Columbia University Mailman School of Public Health & Center for Infection and Immunity, George Washington University, Workwell Foundation, and Ohio State University.
The Institute for Neuro Immune Medicine at Nova Southeastern University
Website: http://www.nova.edu/nim/
Davie location:
University Park Plaza
3440 South University Drive
Ft. Lauderdale, Fl 33328
Phone: 954.262.2850
Fax: 954.262.3850
Kendall location:
Kendall Village Center
Professional Arts Bldg, Suite 111
8501 SW 124th Ave
Miami, Fl 33183
Phone: 305.595.4300
Fax: 305.598.4155
The Institute for Neuro Immune Medicine is a premier research and treatment center for Chronic Fatigue Syndrome and other related Neuro Immune Disorders. Diseases such as Human Immunodeficiency Virus (HIV/AIDs), fibromyalgia, autism spectrum disorder, lyme disease and Gulf War Syndromes are some of the illnesses that are treated at the Institute. The Institute is directed by Dr. Nancy Klimas, Chair of Clinical Immunology at Nova Southeastern University. Dr. Klimas is an internationally recognized figure in the treatment of Chronic Fatigue Syndrome and other Neuro Immune Disorders. Dr. Klimas is joined by Dr. Irma Rey, a clinician with over 20 years of medical experience and director of the Institute's education program.
UNITED STATES – SUPPORT FOR CFS CAREGIVERS
Well Spouse Foundation
PO Box 801
New York, NY 10023
Toll-free telephone: (800) 838-0879
Local telephone: (212) 644-1241
Website:http://www.wellspouse.org/
The Well Spouse Association advocates for and addresses the needs of individuals caring for a chronically ill and/or
disabled spouse/partner. The Association offers peer to peer support and educates health care professionals and the general public about the special challenges "well" spouses face every day. The Association coordinates a national
network of support groups (please see their website for an extensive list), publishes a newsletter (Mainstay), advocates on behalf of caregivers, and helps families cope with the emotional and financial stresses associated with chronic illness.
UNITED STATES - CHILDREN
National Information Center for Children and Youth With Disabilities
1825 Connecticut Ave NW, Suite 700
Washington, DC 20009
Toll-free phone: (800) 695-0285
Phone: (202) 884-8200
Fax: (202) 884-8441
Email:[email protected]
Website:http://nichcy.org/
The National Information Center for Children and Youth With Disabilities provides free information to assist
parents, teachers, caregivers, and others in helping children and youth with disabilities. The website includes a comprehensive section on disability and education law regarding children.
UNITED STATES – REGIONAL
Note: Most regional organizations and support groups provide information packets, referral services, hotlines, and up-to-date state and local information.
NORTHEAST
The Connecticut CFIDS & FM Association, Inc.
P.O. Box 3010
Milford, CT 06460
Phone InfoLine: (800) 952-2037
Email: [email protected]
Website:http://www.ct-cfids-fm.org/
Massachusetts CFIDS/ME & FM Association
Mailing address:
P.O. Box 690305
Quincy, MA 02269-0305
Phone: (617) 471-5559
Website:http://www.masscfids.org/
NJCFSA (New Jersey)
PO Box 477
Florham Park, NJ 07932
NJCFSA Helpline: (888) 835-3677 (during business hours)
Website:http://www.njcfsa.org/
New Jersey - Atlantic County Support Group
Email: Betty McConnell at [email protected]
Vermont CFIDS Association
PO Box 3162
Burlington, VT 05408
Phone: (802) 881-3821
Website: http://www.vtcfids.org/
MIDWEST
Chronic Fatigue Syndrome, Fibromyalgia, & Chemical Sensitivity Coalition of Chicago (CFCCC)
PO Box 277
Wilmette, IL 60091
Phone: (773) 650-1332
Website: www.cfccc.net
The CFCCC was organized for the purposes of support, education, and advocacy for people with chronic fatigue syndrome, fibromyalgia, and chemical sensitivity. Their website provides contact information for support groups for patients, families, and caregivers; phone buddies; information/presentations for school nurses, social workers, and other professions; information and referrals to resources; newsletter, The Canary Times; a resource directory; and lending library. While most resources are located in the Chicago area, the website also provides a number of national
resources as well.
Wisconsin ME/CFS Association
1223 W. Main St. #141
Sun Prairie, WI 53590-1942
Phone: (608) 834-1001
Email: [email protected]
Website:http://www.wicfs-me.org/
SOUTH
The Northern Virginia Chronic Fatigue Syndrome / ME, Fibromyalgia, and Orthostatic Intolerance Support Group
Website:http://www.cfsnova.com/index.html
CFS/FM Organization of Georgia
Website:http://www.cfog.us/
Chronic Fatigue Syndrome/Fibromyalgia Support Group
David Posnack Jewish Community Center, 5850 South Pine Island Road, Davie, Florida
Phone: 954-434-0290.
WEST
The Rocky Mountain CFS/ME & FM Association
7020 E Girard Ave, Suite 207
Denver, CO 80224
Phone: (303) 423-7367
Email: [email protected]
Website:http://www.rmcfa.org/index.html
California Capital CFIDS Association (CCCA)
PO Box 660362
Sacramento, CA 95866
Phone: (916) 484-3788
Email:[email protected]
Website:http://www.ottem.org/ccca/
OFFER (Utah)
OFFER in Utah has been renamed Bateman Horne Center of Excellence and expanded by absorbinng Dr, Lucinda Bateman's Fatigue Consultaion Clinic. Bateman Horne Center of Excellence is now an education/clnical/research center of excellence.
Bateman Horne Center
24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: (801) 359-7400
Fax: (801) 359-7404
Email:support@batemanhornecenter
Website:https://batemanhornecenter.org/http://www.offerutah.org/
CFS and FM Support Group of Dallas/Ft Worth
513 Janann St
Euless, TX 76039
Website:http://www.dfwcfids.org/index.shtml
Fibromyalgia-ME/CFS Support Center, Inc
Tamara Staples, Group Leader
Email: [email protected]
Phone: (503) 476-9520
and
Tami Stackelhouse, Co-Leader
Email: [email protected]
Phone: (971) 832-9322
Website: http://fibrocfssupportcenter.org/
ABROAD
ARGENTINA
Asociacion Civil Fibroamerica
Website:http://fibroamerica.blogspot.com/
Enfermedades Cronicas Socialmente Invisible
Website:http://www.arbitrio.com.ar/
AUSTRALIA– NATIONAL AND REGIONAL
NATIONAL
The Alison Hunter Memorial Foundation
PO Box 6132
North Sydney NSW 2059
Australia
Telephone/Fax +61 2 9958 6285
Website: http://www.ahmf.org/aboutus.html
Alison Hunter was the founding president of ME Young Adults (MEYA), established in 1992 at Royal North Shore
Hospital, Sydney. The Foundation is primarily concerned with advocacy and research. The website contains a very large data base with abstracts of all research conducted on ME/CFS between 1956 and the present.
ME/CFS Australia Ltd.
Postal Address: PO Box 7100, DANDENONG
VIC 3175
Office Address: Suite 5, 106 Foster
Street, DANDENONG VIC 3175
Phone: (03) 9793 4500
Website:http://www.mecfs.org.au/home
Emerge Australia
Website: http://emerge.org.au/
Emerge Australia Inc advocates for, educates about, and provides information on, Myalgic Encephalomyelitis (ME) more commonly known as Chronic Fatigue Syndrome (CFS). Established in 1980, Emerge Australia has been working with people affected by ME/CFS for over 34 years. We believe that until a cure is found, people affected by ME/CFS can lead better lives by being understood and supported by the medical and general communities. Our role is to make sure that anyone affected by ME/CFS has the access they need to the support, education and advocacy that empowers them to make their lives more liveable.
WESTERN AUSTRALIA
ME/CFS Society WA
The Centre for Neurological Support
The Niche, 11 Aberdare Road
Nedlands, Perth. Western Australia 6009
Tel: 08 9346 7477
Fax: 08 9346 7534
Website:http://www.mecfswa.org.au/
NEW SOUTH WALES
ME Chronic Fatigue Syndrome Society of NSW Incorporated
Postal Address: PO Box 5403
Chatswood NSW 1515
Office Address: Suite305A, 425 Victoria Ave
Chatswood NSW 2067
Phone: (02) 9904 8433
ABN: 28 688 072 304
Website:http://www.me-cfs.org.au/
NORTHERN TERRITORY
Northern Territory ME/CFS Society
Office Address: 2/240 Chapel Street Prahran, VIC, 3181
Postal Address: PO Box 120 Prahran VIC 3181
Reception: 9529 1344
(Reception is avalaible Tuesdays - Fridays 9.00am - 4.00pm)
Support Line: 9529 1600
(Support Line is avaliable Tuesdays - Fridays 9.00am-4.00pm)
Email:[email protected]
Website:http://www.mecfs-vic.org.au/welcome-mecfs-australia-northern-territory
SOUTH AUSTRALIA
ME/CFS Australia (SA) Inc.
PO Box 28 Hindmarsh SA 5007
Email: [email protected]
Facebook: www.facebook.com/MECFSSA
Website: http://sacfs.asn.au/
QUEENSLAND
ME/CFS/FM Support Association Qld Inc.St Vincents Hospital
27 Scott Street
Toowoomba Qld 4350,
Australia
Phone: (07) 4632 8173
Fax: (07) 4632 8173
Email:[email protected]
Website:http://www.mecfsfmq.org.au/
CANBERRA
ACT ME/CFS Society
Building 1 (first on the left)
Pearce Community Centre
Collett Place (opposite Pearce shops on Hodgson Crescent)
Pearce
Postal Address
PO Box 717
Mawson Act 2607
Office hours are: 9.30am to 4.30pm Monday to Friday
Phone: 02 6290 1984
Fax: 02 6290 4475
Website:http://www.mecfscanberra.org.au/
VICTORIA
ME/CFS Society Victoria
Office Address:
Suite 5, 106 Foster Street
Dandenong VIC 3175
Postal Address:PO Box 7100
Dandenong VIC 3175
Phone: Support Line: (03) 9791 2199 (9am - 5pm, Monday - Friday; please leave a message if line is not attended)
Administration: (03) 9791 3100 (9am - 5pm, Monday – Friday)
Email:[email protected]
Website: http://www.mecfs-vic.org.au/
TASMANIA
(contact Victoria office)
Website: http://www.mecfs-vic.org.au/welcome-mecfs-australia-tasmania
BELGIUM
ME Society - Belgium
Website:http://www.meab.be/
CANADA
FM-CFS Canada
310-1500 Bank Street
Ottawa, Ontario K1H 1B8Phone: (877) 437- 4673
Email: [email protected]
Website:http://fm-cfs.ca/
National ME/FM Action Network
512, 33 Banner Road
Nepean, ON K2H 8V7
Phone: (613) 829-6667
Fax: (613) 829-8518
Email:[email protected]
Website:http://www.mefmaction.com/
Nightingale Research Foundation
Dr. Byron Hyde, Chairman
121 Iona Street
Ottawa, Ontario K1Y 3M1
Canada
Fax: (613) 523-1958
Email: [email protected]
Website:http://www.nightingale.ca/
Brockville M.E. Association
42 George St., Box 254,
Brockville, Ontario K6V 5V5
Phone: (613) 342-5333
Email: [email protected]
Website: http://brockvilleme-fm.ca/
Association québécoise de l’encéphalomyélite myalgique (AQEM)
2030, boul. Pie-IX, bureau 403
Montréal (Québec) H1V 2C8
Pour toute question administrative
composez-le: 514-369-0386
ou sans-frais: 1-855-369-0386
Courriel: [email protected]
Seaway FM and ME/CFS Support Group
Email [email protected]
Tel: Denise Hurtubuise at (613) 938-3165
or Ghislaine Beaudette at (613) 938-8379
ME/FM Society of BC
http://mefm.bc.ca/
[email protected]
Greater Vancouver: 1-604-878-7707
BC Toll Free: 1-888-353-6322
DENMARK
ME/CFS Foreningen (ME/CFS Association)
RÅDHUSTORVET 1, 1.
SAL 3520 FARUM
TEL: 44 95 97 00
Email: [email protected]
Website:http://www.me-cfs.dk/
Foreningen for myalgisk encefalomyelitis (ME Association)
Telefonisk træffetid på tlf. 29 37 05 59
Email: [email protected].
Website:http://www.dmef.dk/
FRANCE
Association Franҫaise du Syndrome de Fatigue Chronique et de Fibromyalgie
Maison des Associations
72 rue Royale - 59000
LillePhone : 06 45 21 33 88
Email: [email protected]
Website:http://www.asso-sfc.org/
GERMANY
Fatigatio e.V.: Bundesverband Chronisches Erschöpfungssyndrom (CFS/CFS/ME/ME)
Albrechtstr.15 D-10117
Berlin
Tel: 030 – 310 18 89 -0
Fax: 030 - 310 18 89-20
Website:http://www.fatigatio.de/
ME/CFS Actuell
Website:http://www.cfs-aktuell.de/
Bundnis ME/CFS
Email: [email protected]
Website: http://www.buendnis-mecfs.de/
GREAT BRITAIN
25% ME GROUP (Representing the severely ill)
21 Church Street
Troon
Ayrshire KA10 6HT
Phone Main Office: 01292 318611 - Office Hours 9.30 to 5pm - Monday to Friday
Website:http://www.25megroup.org/home.html
Action for M.E.
PO Box 2778
Bristol BS1 9DJ
Tel: 0845 123 2380
Fax: 0117 927 9552
Opening hours 9am - 5pm Monday - Friday (closed Bank Holidays)
Tel: 0845 123 23140845 123 23140845 123 23140845 123 2314
Email: [email protected] [email protected]
Website:http://www.actionforme.org.uk/
Blue Ribbon for the Awareness of ME (BRAME)
30 Winmer Avenue
Winterton-on-Sea
Great Yarmouth
Norfolk NR29 4BA
U.K.
Tel/Fax: 01493 393717
Email:[email protected]
Website:http://www.brame.org/
Bristol ME Support Group
3a Kersteman Road
Redland
Bristol
BS6 7BX
Email. [email protected]
Website: http://bristolmesupportgroup.wordpress.com/
Dorset ME Support Group25 Mariners Way
Chickerell
Dorset
DT3 4LS
Email: [email protected]
Website: http://www.dorsetmesupport.org.uk/
Fibromyalgia and CFS Support of York Region
Website: http://fibrosupport.weebly.com/
Foggy's Support Group (Salisbury)
Email: [email protected] or [email protected]k
Foggy’s has a helpline running Monday to Friday, noon to 4pm, on 0844 8872377
Invest in ME
PO Box 561
Eastleigh
Hampshire SO50 0GQ
U.K.
FAX: 02380 000040
Email:[email protected]
Website:http://www.investinme.org/index.htm
The ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks MK18 4DF
Tel: 01280 818964 (between 9.30am and 4.30pm)
Email: [email protected]
Website:http://www.meassociation.org.uk/
ME Research U.K.
The Gateway, North Methven Street
Perth PH1 5PP
U.K.
Email:[email protected]
Website:http://www.meresearch.org.uk/
Huge list of resources, including national and international charities, and support groups throughout the UK.
Partnership for Research in CFS and ME
Website:http://www.prime-cfs.org/
Sussex ME Society
Tel: 01273 674828
Website: www.measussex.org.uk
Tymes Trust (Representing young people)
PO Box 4347
Stock
Ingatestone CM4 9TE
Advice Line hours : 11am-1pm and 5pm-7pm Weekdays.
Outside these hours you may leave a message and we will call you back.
Website:http://www.tymestrust.org/
Young Action Online (in partnership with Tymes Trust)
Website:http://www.youngactiononline.com/
IRELAND
Irish ME Trust
Carmichael House
North Brunswick Street
Dublin 7
Telephone: Lo-call 1890 200 912
Int. tel: 00 353 1 401 3629
Int. fax: 00 353 1 401 3736
Website:http://www.imet.ie/imet_website/links/links.html
Irish ME/CFS Association
PO Box 3075
Dublin 2
Tel: 01-235096501-235096501-235096501-2350965
Email: [email protected]
Website:http://irishmecfs.org/contact.html
Northern Ireland ME Association
Website: http://www.meassociation.org.uk/2009/09/northern-ireland/
MS/ME Awareness Dromore and Banbridge Support Group
Contact Elaine at 07526 980154
Hope 4 ME & Fibro Northern Ireland
Website: http://www.hope4mefibroni.btck.co.uk/
SCOTLAND
The ME Association/Scotland
Website:http://www.meassociation.org.uk/?p=1054
WALES
Welsh Association of ME/CFS Support (WAMES)
Tel: 01970 636515
Email:[email protected]
Website:http://www.wames.org.uk/
HOLLAND
ME/CVS Verniging (ME/CFS Association)
ME / CFS Association
4 th Hambaken 89
5231 TX Den Bosch
Email: [email protected]
Website:http://www.me-cvsvereniging.nl/
ME-Gids
Website: http://www.me-gids.net/
Features: Forums, articles translated into Dutch, and many resources.
ME/CFS Foundation
Nordic Grove 16
1211 BG
Hilversum
The Netherlands
Tel: 035-6211290 (business days from 10:00-12.30)
Fax 035-6211219
Email: [email protected]
Website:http://www.me-cvs-stichting.nl/
Start Pagina (Comprehensive Dutch resources)
Website:http://me.startpagina.nl/
ITALY
AMCFS
via Luigi Marangoni, 35
27100 Pavia
Email: [email protected]
Website: http://www.associazionecfs.it/
CFS Italia
Email: [email protected]
Website:http://www.cfsitalia.it/
JAPAN
Japanese Society of Fatigue Science
http://www.hirougakkai.com/index.html
Japan ME Association
Mieko Shinohara, President
[email protected]
NEW ZEALAND
Associated New Zealand ME Society (ANZMES)
ANZMES Inc.
P.O. Box 36-307
Northcote, Auckland
New Zealand
Phone: (09) 269 6374
Email:[email protected]
Website:http://www.anzmes.org.nz/
NORWAY
Norges Myalgisk Encefalopati Forening
Kontoradresse
Kr. Augustsgt. 19
0164 Oslo
Telefon: 22 20 34 24
Kontortid: tir - ons – tor
Telefontid kl. 11.30 - 15.30
Email:[email protected]
Website:http://www.me-foreningen.no/
SOUTH AFRICA
The ME Association of Southern Africa
P.O.Box 1802
Umhlanga Rocks 4320
South Africa
Email:[email protected]
Website:http://www.me.org.za/
ME CFS Foundation South Africa NPC
Twitter: @mecfs_sa
Email: [email protected]
Website: http://mecfssa.org/
SPAIN
ASSSEM (Blog)
It is an independent, nonprofit organization, formed mostly by health professionals, whose main aim is to improve the welfare level of a group of patients suffering from little-known serious diseases such as Chronic Fatigue Syndrome, Myalgic Encephalomyelitis ( SFC-MS), fibromyalgia (FM) and Multiple Chemical Syndrome (MCS).
Website: http://www.asssem.org/
Fundación para la Fibromialgia y el Síndrome de Fatiga Crónica
Passeig Manuel Girona
3 33- BARCELONA (Spain)
Email:[email protected]
Website:http://www.fundacionfatiga.org/
Associació Catalana d'Afectats per la Síndrome de Fatiga Crónica / Encefalomielitis Miàlgica
Plaça Comas
13-14 baixos 08028
Barcelona
Telèfon: 933.214.654933.214.654.
Atenció els dilluns i dimecres de 17:00 a 19:00 i dijous de 11:00 a 13:00
Website:http://www.acsfcem.org/
AFINSYFACRO
Centro Social "Ramón Rubial"
C/Azorín 32-34
Móstoles
28935 (Madrid)
Tel: +34 91 613 4790
E-Mail: [email protected]
http://www.afinsyfacro.es/
ASOCIACION MADRILEÑA DE ENCEFALOMIELITIS MIALGICA / SINDROME DE FATIGA CRONICA Y DISFUNCION INMUNE (AMEM/SFCDI)
Email: [email protected]
http://amem-sfcdi.portalsolidario.net/
For Fibromyalgia and Chemical Sensitivities:
AFIBROM
C / Clara del Rey, 4, 1 º A - Esc CW28002
Madrid
Spain
http://www.afibrom.org
SWEDEN
RME- Riksföreningen för ME-patiente (RME - the National Association for ME patients)
Box 11037
04 21
Göteborg
E-post:[email protected]
Telefone: 031-15 58 99
Website:http://www.rme.nu/
Association of ME
Website:http://me-foreningen.se/
SWITZERLAND
Club ME / CFS Switzerland
CH-8000 Zurich
Switzerland
Website:http://www.verein-cfs.ch/
ORGANIZATIONS FOR FIBROMYALGIA
American Fibromyalgia Syndrome Association
6380 E. Tanque Verde, Suite D
Tucson, AZ 85715
Phone: (520) 733-1570
Website:http://www.afsafund.org/
Advocates for FM Funding, Treatment, Education and Research (AFFTER)
P. O. Box 768
Libertyville, IL 60048-0768
Phone: (847) 362-7807
Email:[email protected]
Website:http://www.affter.org/
Fibromyalgia Network
PO Box 31750
Tucson, AZ 85751-1750
Phone: (800) 953-2929 (weekdays 9:00 a.m. to 5:00 p.m. MST)
Local: 5(20) 290-5508
Email: [email protected]
Website:http://www.fmnetnews.com/
National Fibromyalgia and Chronic Pain Association
Website:http://www.fmcpaware.org/
National Fibromyalgia Association
Website:http://fmaware.org/
ORGANIZATIONS FOR RELATED CONDITIONS
American Academy of Allergy, Asthma & Immunology
555 East Wells Street Suite 1100
Milwaukee, WI 53202-3823
Phone: (414) 272-6071
Website:http://www.aaaai.org/home.aspx
American Chronic Pain Association
PO Box 850
Rocklin,CA 95677
Phone:1-800-533-32311
Fax: (916) 632-3208
Emai: [email protected]
Website:http://www.theacpa.org/default.aspx
American Sleep Association
Website:http://www.sleepassociation.org/
ArthritisFoundation
P.O. Box 7669
Atlanta, GA 30357-0669
Phone: (800) 283-7800
Website:http://www.arthritis.org/
Asthma and Allergy Foundation of America
8201 Corporate Drive, Suite 1000
Landover, MD 20785
Phone: (800) 727- 8462
Website:http://www.aafa.org/display.cfm?id=10&sub=29
American Autoimmune Related Diseases Association
National Office:
22100 Gratiot Ave.
Eastpointe, MI 48021
Phone: 586.776.3900**Best way to contact us**
Fax: 586.776.3903 (fax)
Website: http://www.aarda.org/
Chemical Injury Information Network
PO Box 301
White Sulphur Springs, MT 59645
Phone: (406) 547-2255
Fax: (406) 547- 2455
Website:http://ciin.org/
Chemical Sensitivity Foundation
4 Wren Drive
Topsham, ME 04086
Phone: (207) 725-8570
Email[email protected]
Website:http://www.chemicalsensitivityfoundation.org/
Environmental Health Network
PO Box 1155
Larkspur, CA 94977
Phone: (415) 541-5075
Website:http://ehnca.org/
Food Allergy Network
11781 Lee Jackson Hwy., Suite 160
Fairfax, VA 22033-3309
Phone: (800) 929-4040
Fax: (703) 691-2713
Website:http://www.foodallergy.org/
Human Ecology Action League (HEAL)
P.O. Box 509
Stockbridge, Georgia 30281
Phone: (770) 389-4519
Fax : (770) 389-4520
Email: HEALNatnl @aol.com or [email protected](Membership)
Website:http://www.healnatl.org/
Lupus Foundation of America
2000 L Street, N.W., Suite 410
Washington, DC 20036
Main Phone: (202) 349-1155 (8:30 a.m. - 5 p.m. ET, Monday - Friday)
Para informacíon en español: 1-800-558-0121
Fax: 202-349-1156
Website: http://www.lupus.org/
National Gulf War Resource Center, Inc.
2611 SW 17th Street
Topeka, KS 66604
Phone: Toll free (866) 531-7183
Fax:(785) 235-6531
Email:[email protected]
Website:http://www.ngwrc.org/
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: (203) 744-0100
Fax: (203) 798-2291
Washington Office:
1779 Massachusetts Avenue, Suite 500
Washington, DC 20036
Phone: (202) 588-5700
Fax: (202) 588-5701
Website:http://www.rarediseases.org/
National Organization for Seasonal Affective Disorder
Website:http://www.nosad.org/
Sjögren's Syndrome Foundation
6707 Democracy Boulevard, Suite 325
Bethesda, MD 20817
Toll Free Phone: (800) 475-6473
Local call: (301) 530-4420
Fax: (301) 530-4415
Website:http://www.sjogrens.org/
Society for Mitral Valve Prolapse Syndrome/Dysautonomia
PO Box 431
Itasca,IL 60143-0431
Website:http://www.mitralvalveprolapse.com/
OTHER USEFUL ORGANIZATIONS
Clearinghouse on Disability Information
550 12th Street, S.W., Room 5133
Washington, DC 20202-2550
Website:http://healthfinder.gov/orgs/HR0035.htm
Phone: (202) 245-7307 (Voice)
Phone: (202) 205-56377 (TTD)
Fax: (202) 245-7636
"The Clearinghouse provides information to people with disabilities, or anyone requesting information, by doing research and providing documents in response to inquiries. Information provided includes areas of federal funding for disability-related programs. Clearinghouse staff is trained to refer requests to other sources of disability-related information, if necessary."
College Resources For Students With Disabilities
Website: http://www.bestcolleges.com/resources/disabled-students/
"Prospective college students with disabilities will find that many campuses are equipped with offices and services that address accessibility, accommodation, and assistive technology for a diverse range of needs. Student services offices and disability coordinators at many colleges work to make campuses inclusive environments through specialized advocacy, support, and academic services."
Includes legal rights of students with disabilities.
National Organization of Social Security Claimants Representatives
U.S. Social Security Administration
Phone: 1-800-772-1213
Website:http://www.ssa.gov/
The Social Security Administration pays disability benefits under two programs: the Social Security Disability Insurance Program and the Supplemental Security Income (SSI) Program. Medical requirements for both programs are the same. Eligibility for Social Security is based on prior work history and SSI benefits are based on financial need. Most people with CFS/ME who apply for Social Security are denied once or twice and must go through an appeals
process.
Social Security Disability Insurance
Phone: 1-800-772-1213
Website:http://www.ssa.gov/dibplan/index.htm
National Organization of Social Security Claimants Representatives (a lawyer referral service)
560 Sylvan Ave, Suite 2200
Englewood Cliffs, NJ 07632
Phone: 201-567-4228
Lawyer Referral Service: 800-431-2804
Website:http://www.nosscr.org/
Most people have greater success with experienced lawyers than with filing their own appeals. Lawyers who process Social Security appeals usually charge a percentage of back payments owed you by the government (if your appeal
is successful).
Centers for Medicare & Medicaid Services
7500 Security Boulevard
Baltimore MD 21244-1850
Website:http://www.medicare.gov/default.aspx
Social Security and Disability Resource Center
Website: http://www.ssdrc.com/
"The SSDRC is published, edited, and maintained by Tim Moore, a former disability claims examiner for the social
security administration's disability determination services (DDS), as well as a former caseworker with a background in many assistance programs, including medicaid for disabled adults. The goal of this site is to provide information
about how the federal government's disability programs work, the idea being that qualified information may lead to better choices as to how to initiate and pursue claims and appeals, and potentially avoid time-consuming and costly
mistakes."
