WEBSITES WITH LISTS OF ORGANIZATIONS
CFS Knowledge Center: comprehensive international links: http://cfsknowledgecenter.com/worldwide-resources/
Fibromyalgia Network links page: http://www.fmnetnews.com/coping-resources/links
ONLINE ME/CFS AGGREGATORS
Science for ME: https://www.s4me.info/
Dr. Marc-Alexander Fluks finds a lot of interesting articles which he shares to various mailing lists: http://www.me-net.combidom.com/meweb/index.htm
List of Research Charities (Worldwide): https://phoenixrising.me/resources/research-charities
ACTIVISM
MEAction
Website: https://www.meaction.net/
“Our movement fights for recognition, education, and research so that, one day, all people with ME and CFS will have support and access to compassionate and effective care.”
Action for ME
Website: https://www.actionforme.org.uk/
“Action for M.E. is the only charity in the UK supporting people with M.E. of all ages and our services have often been referred to as a ‘lifeline’ by those who have accessed them. We are working to ensure that adults, children, young people and families living with M.E. are supported during this unprecedented time, and beyond.”
Action for ME’s InterAction magazine articles can be listened to online by anyone for free here. https://soundcloud.com/actionformeaudio
INTERNATIONAL AND TRANSNATIONAL ORGANIZATIONS
World M.E. Alliance (formerly the International Alliance for M.E.)
Website: https://worldmealliance.org/
The Alliance is currently made up of member organisations from countries including the UK, South Africa, Canada, Spain, Wales, New Zealand and the US. As part of its next steps, it is looking to expand this and bring in more organisations to help shape its future.
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 : Admin@iacfsme.org
Website: https://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.
Myalgic Encephalomyelitis International (ME International)
Email: admin@me-international.org
Website: https://me-international.org/en/
ME International was established in 2019 out of an observed need to advocate for patients with myalgic encephalomyelitis. The organization was originally founded by Pam and Jim Lutey, and quickly grew into a 9 member board of directors, with over 700 members worldwide. It was realized that government medicine worldwide was not addressing the needs of ME patients. Through the adoption of the International Consensus Criteria (2011) and the International Consensus Primer (2012), ME International believes that proper diagnosis and treatment of ME can begin.
ME/CFS Worldwide Research Alliance – Chronic Fatigue Syndrome – Myalgic Encephalomyelitis Laboratory
Website: https://mcwpa.org/
Long Covid Alliance
Website: https://longcovidalliance.org/about/
In 2020, 21 science, post-viral disease and patient advocacy organizations came together to call for urgent government investment for Long COVID research. This successful effort laid the foundations of the Long COVID Alliance. Today, this network of patient-advocates, scientists, disease experts, and drug developers collaborate and share their collective knowledge to transform our understanding of post-viral illness.
Doctors with ME
Website: https://doctorswith.me/
Doctors with ME is a global professional association for medical practitioners, scientists and researchers in the field of myalgic encephalomyelitis, as well as leading international experts in the field of post-viral disease and related conditions.
MECFSnet
Website: https://mecfs.rti.org/
The shared vision of the ME/CFS Collaborative Research Network (ME/CFSnet) is to encourage collaborative research in partnership with individuals and advocacy groups to understand the disease and develop better diagnosis and treatment.
EUROPE-WIDE
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.
European ME Coalition
Website: https://europeanmecoalition.com/
“We are an advocacy group for persons suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. Our team consists of ME/CFS patients and carers who strive for high-quality scientific research so that one day an effective treatment for this debilitating illness can be found.”
UNITED STATES – NATIONAL
Regrettably. CFSAC expired in 2018. We hope it will be reinstated as it provided a valuable liaison with HHS and Congress.
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).
US ME/CFS Clinician Coalition
The U.S. ME/CFS Clinician Coalition was formed in 2018 by a group of American ME/CFS expert clinicians who have collectively spent hundreds of years treating many thousands of ME/CFS patients. Founding members have served on the expert panel that authored the National Academy of Medicine’s 2015 report on ME/CFS, have authored primers on clinical management, have contributed to the CDC’s medical education initiatives, and have served on the Health and Human Services’ CFS Advisory Committee before it was sunsetted in 2018. Many founding members have been and continue to be actively involved in ME/CFS research.
Website: https://mecfscliniciancoalition.org
Solve ME/CFS Initiative (formerly The CFIDS Association of America)
350 N Glendale Avenue
Suite B #368
Glendale, CA 91206
Phone: 704-364-0016
Email:SolveCFS@SolveCFS.org
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:info@ncf-net.org
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
Center for Solutions for ME/CFS
Website: https://cfsformecfs.org/
Research center at Columbia University, committed to understanding the pathogenesis of ME/CFS. The Center for Solutions for ME/CFS (CfS for ME/CFS) is an interdisciplinary, inter-institutional NIH-funded Collaborative Research Center comprised of clinicians, clinical investigators, basic scientists who are committing to working together to understand the pathogenesis of ME/CFS and develop evidence-based strategies for interventions that prevent and mitigate disease.
Chronic Fatigue Initiative
Email: info@CFInitiative.org
Website: http://cfinitiative.org/
“Chronic Fatigue Initiative has mounted the first scientifically-rigorous and statistically-significant wide-scale research into the underlying infectious, immunological and toxicological causes of Chronic Fatigue Syndrome (“CFS”), which had previously attracted little to no resources for basic research. As the causes of the illness are deciphered, CFI’s goal is to disseminate its findings in order to equip the broader research community to work on mechanisms of the disease as well as diagnostics, treatment and prevention. CFI, which is located in New York City, was created and funded by the Hutchins Family Foundation.”
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:info@wpinstitute.org
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: info@omf.ngo
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: redefiningmecfs@gmail.com
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.
Center for Enervating NeuroImmune Disease
Website: http://neuroimmune.cornell.edu/
Email: enid_center@cornell.edu
Phone: (607) 255-2317
“Foremost among cryptic neuroimmune diseases is one variously known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease. The Center’s mission is to promote research to identify its cause(s), biomarkers, and pathophysiology in order to lead to prevention and effective treatments.”
UNITED STATES – SUPPORT FOR 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
Center for Parent Information and Resources
Website: https://www.parentcenterhub.org/whatiscpir/
A central “Hub” of information and products created for the network of Parent Centers serving families of children with disabilities All the materials found on the CPIR Hub have been created and archived for Parent Centers around the country to help them provide support and services to the families they serve. The CPIR employs a user-centered process, gathering the perspectives of our experienced audience—Parent Center staff members and other experts—every step of the way, to create products and services that increase Parent Centers’ knowledge and capacity in specific domains.
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
Massachusetts ME/CFS & 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/
Vermont CFIDS Association
PO Box 3162
Burlington, VT 05408
Phone: (802) 881-3821
Website: http://www.immunedysfunction.org/
MIDWEST
Minnesota ME/CFS Alliance
https://www.minnesotamecfs.org/about-us
SOUTH
The Northern Virginia Chronic Fatigue Syndrome / ME, Fibromyalgia, and Orthostatic Intolerance Support Group
Website:http://www.cfsnova.com/index.html
Chronic Fatigue Syndrome/Fibromyalgia Support Group
David Posnack Jewish Community Center, 5850 South Pine Island Road, Davie, Florida
Phone: 954-434-0290.
WEST
OFFER (Utah)
OFFER in Utah has been renamed Bateman Horne Center of Excellence and expanded by absorbing Dr. Lucinda Bateman’s Fatigue Consultation Clinic. Bateman Horne Center of Excellence is now an education/clinical/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/
ABROAD
ARGENTINA
Asociacion Civil Fibroamerica
Website:http://fibroamerica.blogspot.com/
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 and Lyme Association of WA
The Niche, 11 Aberdare Road
Nedlands, Perth. Western Australia 6009
Tel: +61 8 6457 7477
Email: info@mecfswa.org.au
Website: https://www.facebook.com/ME.CFS.Western.Australia/
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/
SOUTH AUSTRALIA
ME/CFS South Australia
Postal Address:
PO Box 322,
Modbury North
South Australia 5092
Ph: 1300 128 339
Office Hours: Monday – Friday, 2-5pm
Email: contact@mecfssa.org.au
Website: https://mecfssa.org.au/
Their website includes resources and links from around the world.
QUEENSLAND
ME/CFS/FM Support Association Qld Inc.
St Vincents Hospital
27 Scott Street
Toowoomba Qld 4350,
Australia
Phone: (07) 4632 8173
Mobile: 0498 073 343
Email: mefmtba@bigpond.com
Website:http://www.mecfsfmq.org.au/
CANBERRA
ACT ME/CFS Society
Build A Better Me – Arthritis, Pain Support & ME/CFS ACT
PO Box 717
Mawson ACT 2607
Phone: 1800 011 041
Email: info@arthritisact.org.au
Website:http://www.mecfscanberra.org.au/
BELGIUM
ME Society – Belgium
Website:http://www.meab.be/
BRAZIL
EM/SFC BR (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Brazil)
Website: https://sindromedafadigacronica.com.br/
Somos um grupo heterogêneo internacional lusófono de voluntários (portadores de EM/SFC, cuidadores, profissionais da saúde e outros) comprometidos com a missão de disseminar, através deste site, informações sobre a Encefalomielite Miálgica, também conhecida como Síndrome da Fadiga Crônica. Essa iniciativa tem como objetivo trazer à luz essa condição pouco conhecida e subdiagnosticada. Acreditamos que, assim, seja possível, por meio de um suporte teórico e experiencial, contribuir com os profissionais de saúde que se interessem por essa causa, e melhorar a qualidade de vida dos muitos indivíduos que sofrem dessa patologia capaz de limitar ou até reduzir drasticamente a capacidade física e/ou mental de seus portadores.
(We are a heterogeneous international Portuguese-speaking group of volunteers (ME/CFS sufferers, caregivers, healthcare professionals and others) committed to the mission of disseminating, through this website, information about Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. This initiative aims to bring this little-known and underdiagnosed condition to light. We believe that, in this way, it is possible, through theoretical and experiential support, to contribute to health professionals who are interested in this cause, and improve the quality of life of the many individuals who suffer from this pathology capable of limiting or even drastically reducing the physical and/or mental capacity of their carriers.)
CANADA
CHU Sainte-Justine
3175 ch. de la Côte-Sainte-Catherine,
Montréal, Quebec
Canada H3T 1C4
National ME/FM Action Network
512, 33 Banner Road
Nepean, ON K2H 8V7
Phone: (613) 829-6667
Fax: (613) 829-8518
Email:mefminfo@mefmaction.com
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: info@nightingale.ca
Website:http://www.nightingale.ca/
Myalgic Encephalomyelitis Association of Ontario (MEAO)
Suite 307, 170 Donway West
Toronto, ON M3C 2G3
Phone: 416.222.8820 (in the Greater Toronto Area) or toll-free: 1.877.632.6682 in the rest of Ontario. Please leave a message including your name and telephone number and a little bit about why you are calling.
Website: https://www.meao.ca/whoweare.html
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: info@aqem.org
ME/FM Society of BC
http://mefm.bc.ca/
info@mefm.bc.ca
Greater Vancouver: 1-604-878-7707
BC Toll Free: 1-888-353-6322
Seaway FM and ME/CFS Support Group
Email seawaymefmgroup@gmail.com
Tel: Denise Hurtubuise at (613) 938-3165
or Ghislaine Beaudette at (613) 938-8379
DENMARK
ME/CFS Foreningen (ME/CFS Association)
RÅDHUSTORVET 1, 1.
SAL 3520 FARUM
TEL: 44 95 97 00
Email: MAIL@ME-CFS.DK
Website:http://www.me-cfs.dk/
Foreningen for myalgisk encefalomyelitis (ME Association)
Telefonisk træffetid på tlf. 29 37 05 59
Email: Information@DMEF.dk.
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: contact@asso-sfc.org
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: info@buendnis-mecfs.de
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: https://25megroup.org/about-us
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: admin@actionforme.org.uk questions@actionforme.org.uk
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:info@brame.org
Website:http://www.brame.org/
Bristol ME Support Group
3a Kersteman Road
Redland
Bristol
BS6 7BX
Email. andy.rees@tesco.net
Website: http://bristolmesupportgroup.wordpress.com/
Dorset ME Support Group
25 Mariners Way
Chickerell
Dorset
DT3 4LS
Email: help@dorsetmesupport.org.uk
Website: http://www.dorsetmesupport.org.uk/
Fibromyalgia and CFS Support of York Region
Website: http://fibrosupport.weebly.com/
Foggy’s Support Group (Salisbury)
Email: barbara.white@butyoudontlooksick.co.uk or deb.cooke@butyoudontlooksick.co.uk
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:info@investinme.org
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: admin@meassociation.org.uk
Website:http://www.meassociation.org.uk/
The ME Association maintains a library of all research relating to ME/CFS: ME Association: Index of ME/CFS Published Research.
This extensive library of research is a free resource and available to anyone. The Index provides an A-Z of published research studies and selected key documents and articles, listed by subject matter, on myalgic encephalomyelitis, myalgic encephalopathy, and/or chronic fatigue syndrome (ME/CFS). You can use it to easily locate and read any research in a particular area that you might be interested in, e.g. epidemiology, infection, neurology, post-exertional malaise etc.
ME Research U.K.
The Gateway, North Methven Street
Perth PH1 5PP
U.K.
Email:meruk@pkavs.org.uk
Website:http://www.meresearch.org.uk/
Huge list of resources, including national and international charities, and support groups throughout the UK.
Physios for ME
Website: https://www.physiosforme.com/
We are a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis (“ME”) The information provided on this website is meant to inform and signpost helpful resources.
Salus Foundation
Phone : 07809 246 674
Website: https://www.salus.org.uk/
Salus aims to promote and protect the good health of people who live with chronic fatigue and related conditions, their families, friends and carers in particular but not exclusively through advice, support and health and wellbeing educational workshops.
We offer activities,workshops and support groups across Birmingham, Sutton Coldfield and Solihull. We are governed by a Board of Trustees appointed on the basis of their skills and experience. They bring a range of knowledge and understanding to follow and fulfill our objectives and outcomes.
Sussex and Kent ME/CFS Society
Information line – 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: https://www.tymestrust.org/
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
12 Beechpark Lawn
Freepost FDN5215
Dublin 15
D15 HX0N
Tel: 01-2350965
Email: info@irishmecfs.org
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
SCOTLAND
Edmesh – Edinbugh ME Self-Help Group
Website: https://www.edmesh.org.uk/
WALES
Welsh Association of ME/CFS Support (WAMES)
Tel: 01970 636515
Email:enquiries@wames.org.uk
Website:http://www.wames.org.uk/
CZECH REPUBLIC
Neunavni
Jahodová 2710/111
Prague 10
106 00
Telephone: +420 606 717 352
Email: info@neunavni.cz
Website: https://neunavni.cz/
NETHERLANDS
ME/CVS Verniging (ME/CFS Association)
ME / CFS Association
4 th Hambaken 89
5231 TX Den Bosch
Email: infolijn@me-cvsvereniging.nl
Website:http://www.me-cvsvereniging.nl/
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: info@me-cvs-stichting.nl
Website:http://www.me-cvs-stichting.nl/
Start Pagina (Comprehensive Dutch resources)
Website:http://me.startpagina.nl/
ME-Gids
Website: http://www.me-gids.net/
Features: Forums, articles translated into Dutch, and many resources.
ITALY
CFS Italia
Email: amministrazione@cfsitalia.it
Website: http://www.cfsitalia.it/
CFS/ME Associazione Italiana
c/o
CRO – Centro di Riferimento Oncologico
V. Franco Gallini, 2
33081 Aviano (Pordenone)
Website: https://www.stanchezzacronica.it/
Email: cfs@cro.it
ISRAEL
ME/CFS Israel
Email: mecfs.israel@gmail.com
Website: https://www.mecfsisrael.org/
JAPAN
Japanese Society of Fatigue Science
http://www.hirougakkai.com/index.html
Japan ME Association
Mieko Shinohara, President
mieko.shinohara@gmail.com
NEW ZEALAND
Associated New Zealand ME Society (ANZMES)
ANZMES Inc.
P.O. Box 36-307
Northcote, Auckland
New Zealand
Phone: (09) 269 6374, (03) 471 6203
Email:info@anzmes.org.nz
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:post@me-foreningen.no
Website:http://www.me-foreningen.no/
PORTUGAL
Associação Nacional Contra A Fibromialgia E Síndrome De Fadiga Crónica (MYOS)
(National Association Against Fibromyalgia And Chronic Fatigue Syndrome)
Av. Santos Dumont, n.º 67, 1st floor
1050-203, Lisbon
Telephone: 217 973 294 / 961 792 730 (phone service on Mondays, Wednesdays and Fridays, from 2pm to 6pm)
E-mail: sede@myos.pt | secretariado@myos.pt
Website: https://myos.pt/
SOUTH AFRICA
ME CFS Foundation South Africa SA
Twitter: @mecfs_sa
Website: https://www.facebook.com/MECFSFoundationSA/
SPAIN
La Fundación de Afectados y Afectadas de Fibromialgia y Síndrome de fatiga crónica
Website: https://www.laff.es/
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: secretaria@afinsyfacro.es
http://www.afinsyfacro.es/
ASOCIACION MADRILEÑA DE ENCEFALOMIELITIS MIALGICA / SINDROME DE FATIGA CRONICA Y DISFUNCION INMUNE (AMEM/SFCDI)
Email: SFCenMADRID@yahoogroups.com
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:info@rme.nu
Telefone: 031-15 58 99
Website:http://www.rme.nu/
ME-föreningen (Association of ME)
Website:http://me-foreningen.se/
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/
Fibromyalgia Network
PO Box 31750
Tucson, AZ 85751-1750
Email: inquiry@fmnetnews.com
Website:http://www.fmnetnews.com/
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: acpa@pacbell.net
Website: https://www.theacpa.org/about-us/
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: https://aafa.org/about-aafa/
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/
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/
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:jim@ngwrc.org
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/
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/
OTHER USEFUL ORGANIZATIONS
Clearinghouse on Disability Information
550 12th Street, S.W., Room 5133
Washington, DC 20202-2550
Website: https://www2.ed.gov/about/offices/list/osers/codi.html
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.”