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Larger charities and organisations

These links are for information only, and D&GME Network does not necessarily endorse their contents. If you would like your organisation listed here, please contact us.

United Kingdom

Action for ME / Westcare UK "A national charity campaigning to improve the lives of people with ME in the UK."

Association of Young People with ME "A UK-based, independent, registered charity dedicated to giving help, friendship, support and vital contact to children and young people with ME."

Blue Ribbon for the Awareness of ME "Publicises and creates awareness of ME and its consequences."

Case History Research on Myalgic Encephalomyelitis "A registered charity set up to identify as many severely disabled ME sufferers as possible in the UK and to monitor the course of their illness over a period of ten years."

CFS Research Foundation "The CFS Research Foundation was officially launched in 1993 to bring together the best minds to meet the challenge presented by chronic fatigue syndrome, encouraging basic research into the body mechanisms that lead to and continue the illness."

ME Association "Aims to support, to help, to inform and to empower all those whose lives are affected by ME/CFS."

Meach Trust (ME Accommodation & Care Homes) "A charity whose aim is to raise sufficient funds to open the first specialised residential care home for those with severe or chronic ME." For more details, visit the website, email info@meach.org.uk, write to the Trust at 29 Turnpike Way, Ashington, W Sussex RH20 3QG or telephone (before 7pm) 01903 891386.

ME Northeast "A regional charity for an area from the Scottish borders to North Yorkshire."

National ME Centre "Provides a unique blend of help, care and support to sufferers and their families: The Centre offers a fully integrated service for the management of this complex illness. This includes, and is dependent upon, the skills of professional clinicians and therapists as well as volunteer support workers, many of whom have themselves experience of ME."

RiME — Research into Myalgic Encephalomyelitis Campaigns nationally for research into the underlying physical causes and disease processes of ME. RiME publishes a Newsletter twice a year, usually in spring and autumn. All past issues are available here as individual RTF files. The organisation's latest project is to do with the All Party Parliamentary Group on ME.

Search ME "A young charity which has made its mark locally and now plans to hit a wider audience in 2005. Its goal is to raise a number of issues to help illustrate the problems that many thousands of people suffering from ME experience on a daily basis
and to tell you how you can help us to help them."

25% ME Group "Support for severely affected ME sufferers, the 25% of sufferers who remain long term ill and disabled by the disease."

Welsh Association of ME & CFS Support "An umbrella body set up in April 2001 with the aim of giving a united voice to ME and CFS sufferers in Wales."

Young Action Online / Tymes Trust "A concentrated resource of solid information from creditable sources for young people with ME, their families and professionals."

Europe

Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie French CFS association (in French).

Associazione Italiana Sindrome da Stanchezza
Cronica Italian CFS association (in Italian).

Danish ME/CFS Association "ME/CFS Foreningen is the Danish ME/CFS Association. It was founded in 1992 and counts almost 500 members today. The purpose of the association is to provide factual information about ME/CFS to patients, families, health care professionals, and social authorities, and to offer support for patients and their families. The association offers: A magazine published 4 times a year; Research and coping information about ME/CFS; Information for doctors; Local support groups; Patient advisors and diet advisor; Legal advisors; and a child & youth group."

Fatigatio eV German ME/CFS association (in German). Bundesverband Chronisches Erschöpfungssyndrom is a large independent organisation repesenting people with ME/CFS in Germany.

Irish ME/CFS Support Group This organisation has more than 400 members nationwide. It has regular meetings, often with guest speakers, in Dublin, organises a telephone network list, and produces a 30-page quarterly newsletter. It is involved in helping set up support groups around Ireland — currently there are four. The group is currently concentrating on raising money for research and raising awareness of the condition. Write to: PO Box 3075, Dublin 2. Tel: (01) 2350965. Fax: (01) 4968360. Email: info@irishmecfs.org.

Irish ME Trust "The Irish ME Trust provides information and support to suffers of ME and CFS in Ireland, employing a qualified counsellor with an in-depth knowledge of ME. As well as arranging meetings for members around the country, it supports members' applications for government department benefits, and continues to lobby Government agencies for proper recognition of the illness and the establishment of a definitive clinic for diagnosis and treatment. The group feels strongly that ME patients need to see biomedical research into their condition, as well as the social and community care support that they deserve."

ME Fonds Dutch CFS organisation (in Dutch).

ME Platform Dutch CFS organisation (in Dutch).

Norwegian ME Association "The Norwegian ME Association, Norges Myalgisk Encefalopati Forening, was founded in 1987. At the end of 2003 we counted 743 members from all over the country. We have an office in Oslo, centrally located behind the university and close to the palace, and have established 'self-help' groups in many counties. Every other week we have 'open house' for members or anyone who wants to talk to us, get more information or buy books on the subject (only in English). We provide factual information about ME to lay and health professionals, help and support people with ME and their families and carers, and produce a magazine and newsletter."

United States of America

American Association for Chronic Fatigue Syndrome "A non-profit organization of research scientists, physicians, licensed medical healthcare professionals, and other individuals and institutions interested in promoting the stimulation, coordination, and exchange of ideas for CFS and Fibromyalgia research and patient care."

CFIDS Association of America "The nation's leading charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome."

Chronic Syndrome Support Association Founded in order to educate the general population and healthcare professionals about Chronic Immunological and Neurological Disorders.

Mothers Against Myalgic Encephalomyelitis (MAME, Inc.) "Founded in 1999 as a vehicle for promoting awareness and education about Myalgic Encephalomyelitis, enlisting the support of well family and community members through volunteerism. The president and founder, Jean Harrison, presides over a newly reconstituted board comprised of both patients and non-patients."

Myalgic Encephalomyelitis Society of America "The ME Society of America is an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a multi-system disease adversely affecting the heart, brain, neuroendocrine, immune, and circulatory systems. The society publicizes research and case definitions on the disease regardless of the name under which they were published."

National CFIDS Foundation "Helps fund medical research into Chronic Fatigue Immune Dysfunction Syndrome and related illnesses. The organisation is collecting signatures for a petition calling for 'the recognition of myalgic encephalomyelitis as a serious and debilitating disease'. To sign the petition or help in its distribution, please visit the petition website."

Canada

FM-CFS Canada "Canada's first national fibromyalgia and CFS/ME campaign. Patient groups, medical associations, volunteers and sponsors working together."

MESS ME Support Services is a volunteer organization based in Toronto dedicated to helping those who suffer from ME/CFS. By keeping abreast of current medical research into the condition, as well as the latest treatment strategies (both pharmaceutical and holistic), MESS strives to foster understanding of this condition and the difficulties in living with it.

National ME/FM Action Network A Canadian, registered, non-profit organisation dedicated to advancing the recognition and understanding of ME/CFS and Fibromyalgia Syndrome through education, advocacy, support and research.

Nightingale Research Foundation "A charitable foundation to conduct and assist research into the cause and cure of ME/CFS and to serve as an educational institution."

Australia and New Zealand

Alison Hunter Memorial Foundation "The Alison Hunter Memorial Foundation is a non-profit institution. The Foundation works independently in a spirit of support and cooperation with all researchers, institutions and ME/CFS societies to advance scientific knowledge and medical care. Its mission statement is to reduce the impact in the community of the disease myalgic encephalopathy/chronic fatigue syndrome."

ANZMES The Associated New Zealand ME Society. There is a network of support groups throughout New Zealand, and ANZMES is the national body. It is an incorporated society with its own constitution, and exists to serve existing members, assist those who are newly diagnosed, as well as help those who may only suspect they are sufferers. Its website has a range of useful information, and a range of publications is available, principally "Meeting Place", the ANZMES quarterly journal for members.

ME/CFS Society of New South Wales "Committed to assist people who are adversely affected by ME/CFS, with special emphasis upon the people of New South Wales. Provides information and support to all who are affected by ME/CFS and related illnesses, promotes accurate awareness of ME/CFS within medical and scientific communities and the wider public, and supports research into the pathophysiology and treatment of ME/CFS."

ME/CFS Society of Queensland "Provides support, information and practical assistance to people affected by ME/CFS/FM."

ME/CFS Society of South Australia "Aims to improve the quality of life and health management of people with ME/CFS, whilst supporting community education and research initiatives."

ME/CFS Society of Victoria "A non-profit charitable organisation dedicated to serving the CFS community in Victoria and Tasmania."

National ME/FMS Country Network Australia "Our aims are to reach out to support families and individuals affected by ME/FMS in rural and remote areas, to provide services appropriate to their needs, and to act as an advisory committee to government and medical authorities."

Organisations funding research into ME/CFS

CFS Research Foundation In existence since 1993, bringing together researchers to meet the challenge presented by chronic fatigue syndrome, encouraging basic research into the body mechanisms that lead to and continue the illness.

HHV-6 Foundation Sponsors basic research on the role of HHV-6 in chronic fatigue syndrome and other conditions, and is supported through private donations.

National CFIDS Foundation "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."

ME communities

Help With ME- Making Living with ME/CFS Easier " A huge resource of products to aid people with ME/CFS. From lightweight cutlery to Wheelchairs. A great place to find that special gift or funny card. Find inspiring books, relax music and special products for light, sound or chemical sensitivities. Or join the forum for a chat."

MEActionUK “This website exists to raise awareness of all the issues relating to ME and in turn I hope that the information here gives support for those who are severely ill and disabled by M.E.. Overall my aim with this site is to keep people well informed.”

ME / CFS / CFIDS International Recovery Register “The Recovery Questionnaire collects data informally from people who have recovered from CFS, ME and similar conditions, and so is unique in being a methodological study of apparent cause(s) of successful return to health. It sits in contrast with extensive but so far incompletely successful efforts to formulate cures by exploring possible causes of the disease(s).”

ME/CFS Parents “Deciding about having a child, going through pregnancy and parenting are all difficult even when you don't suffer from ME/CFS. This site aims to offer extra support to those going through these life stages.”

ME support "A friendly and welcoming website with a large amount of articles on issues to do with ME submitted by visitors to the website. There is also a forum and regular webchat "

Network ME "Provides telephone support, information and advice which helps to alleviate suffering and feelings of isolation, and helps sufferers obtain recognition and serious treatment."

A Place For M.E. "Our purpose is to provide adapted housing and specialist care to those with M.E. This is a world first! "