LIVING WITH ME

The ME/CFS Society of NSW Inc. is a Registered Charity that aims to provide information and support to all who are affected by Myalgic Encephalomyelitis (“ME”) also called Chronic Fatigue Syndrome (“CFS”) and any related illnesses, to promote accurate awareness of ME/CFS within medical and scientific communities and the wider public, and to support research into the treatment of ME/CFS.

http://www.me-cfs.org.au/

http://www.me-forening.no/

http://www.fatigatio.de/

The aims of the CFS Research Foundation are three-fold; first, to gain a workable understanding of how the disease is caused (pathogenesis), and second, with that knowledge, to develop useful treatments which will lead to a cure in most cases. And thirdly, to develop a diagnostic test for the disease which is simple enough to be used widely and specific only to Chronic Fatigue Syndrome (CFS).

http://www.cfsrf.com/goals.html

http://www.me-cfs.dk/

http://asso.nordnet.fr/cfs-spid/

The National ME/FM Action Network is a Canadian, registered, non-profit organization dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advocacy, support, and research.

The Network seeks to effect positive change in the attitudes, policies, and practices of government, medical governing bodies, business, the media, and the general public.

http://www.mefmaction.net/Home/AboutUs/tabid/88/Default.aspx

http://www.me-platform.vuurwerk.nl/

http://www.salutemed.it/cfs/

The Nightingale Research Foundation is a Canadian registered charitable organization dedicated to the study and treatment of Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS) and related illnesses.

We have been investigating M.E. and CFS patients since 1984. These thousands of case studies have formed the basis of our research into the causes and treatment for symptoms, and have led to a continual enhancement of our diagnostic protocols. We are now integrating the knowledge gained from this case-based research as we re-define the disease “of a thousand names”.

http://www.nightingale.ca/

M.E.S.S. is a volunteer organization dedicated to helping those who suffer from Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). By keeping abreast of current medical research into ME/CFS, as well as the latest treatment strategies (both pharmaceutical and holistic), M.E.S.S. strives to foster understanding of this condition and the difficulties in living with it.

Based in Toronto, Ontario, Canada, M.E.S.S. currently has on file a substantial collection of formal research papers on ME/CFS, in addition to other reference sources. Ken Coleman, the Executive Director, also acts as liaison to support groups at the national level.

http://cfids-cab.org/mess/meamess.htm

The Irish ME Trust was established in 1989 for the purpose of trying to alleviate some of the hardship which was being experienced by ME sufferers throughout the country.

We provide information and a counselling service to those affected as well as targeting individual problems on behalf of sufferers. We aim to create awareness in the general public and the medical profession as to the plight of ME sufferers in Ireland and to generate funds for the purpose of promoting research into the illness.

http://www.imet.ie/

M.E. usually starts after a viral illness (hence it is sometimes called Post-Viral Fatigue Syndrome) and is recognised as a neurological condition by the World Health Organisation.

However, perhaps because it is a largely invisible illness with routine tests usually being normal (although research has found many subtle abnormalities), sufferers often face many difficulties getting appropriate support and treatment.

Through our various activities and awareness campaigns we strive to improve the situation for people with M.E. and to give them information to empower themselves.

The group, which has been run entirely by volunteers for the last eight years, currently has over 400 members, from the estimated 10,000 sufferers in the Republic of Ireland (many of whom, unfortunately, remain undiagnosed).

http://www.activelink.ie/irish/organisation.php?id=634

Welcome to the Search M.E. Web Site. Search M.E. has been based in Rosyth since 2002 and although a very young charity has made its mark locally and now plans to hit a wider audience in the coming months.

Our goal is to provide you with a valuable insight into how our charity works. We hope to raise a number of issues to help illustrate the problems that many thousands of people suffering from M.E. experience on a daily basis and to tell you how you can help us to help them.

http://www.search-me.org.uk/

Network ME is a now firmly established registered charity providing vital services to those suffering from ME/CFS in North London and the surrounding counties. Network ME is able to offer a comprehensive service to all those affected by ME/CFS, helping to alleviate the suffering and feelings of isolation and enable the sufferers obtain early diagnosis and treatment.

http://www.networkme.org.uk/

FORME is dedicated to helping osteopathic research into chronic fatigue syndrome (CFS/ME) also known in the USA as CFIDS. FORME has funded research for the past 9 years that has led to the scientific support of The Perrin Technique™ which has helped hundreds of patients with chronic fatigue syndrome (CFS/ME) and totally cured many since 1989.

http://www.forme-cfs.co.uk/research.html

CHROME (Case History Research on Myalgic Encephalomyelitis) is a registered charity set up in 1994 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. The statistical data from this study will be analysed and used to supplement medical research in important ways.

http://www.chromesw6.co.uk/whatis.html#chrome

We are an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3. We have links nationwide and also internationally.

Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal “Thumb-Print Test” that can confirm the presence of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.

http://www.investinme.org

Chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems. On this portion of our website you can find detailed information about CFIDS, its symptoms, diagnosis, treatment, important research findings and how it affects the lives of those who live with it everyday.

http://www.cfids.org/

The Wisconsin Chronic Fatigue Syndrome Association formed the Patient Alliance for Neurological Disorders Assistance (PANDA) to help people who are struggling with chronic medical conditions.

Our  purpose is to act as a clearinghouse for CFS information within the state of Wisconsin; to assist patients and their families; to encourage communication among agencies, institutions and concerned individuals; and to promote research on the cause, cure and ultimate prevention of CFS.

http://www.wicfs-me.org/

Founded in 1997 by two 14 year CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) advocates, the goals of the Foundation are to help fund medical research to find a cause, expedite treatments and eventually a cure for this devastating disease.  The NCF also strives to provide information, education, and support to those people who have CFIDS (also known as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and many other names)– as well as related illnesses such as Gulf War Illness (GWI) and Multiple Chemical Sensitivities (MCS).

http://www.ncf-net.org/

The M.E. Society of America is an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis (ME/CFS), a multi-system disease adversely affecting the cellular mitochondria and the heart, brain, neuroendocrine, immune, and circulatory systems. M.E. was first described in the 1950’s following the recognition of many cases around the world, including a number of cases at the Royal Free Hospital in England. Many different viruses, bacteria, or toxins in combination with genetic factors may be involved in the etiology of the disease, which usually begins in childhood or early adulthood with an acute infection.

http://www.cfids-cab.org/

The Chronic Syndrome Support Association, Inc., is a 501(c)3 non-profit corporation.   It was founded in 1997 in order to educate the general population and health-care professionals who lack current knowledge of the research being done, and potential research that needs to be done, on these serious, yet invisible, Chronic Immunological and Neurological Disorders (CIND), which include Fibromyalgia Syndrome (FMS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivities Syndrome (MCS), Myalgic Encephalomyelitis (ME, the term used in most of the world) / Chronic Fatigue Syndrome (CFS, the term used in the United States), Chronic Myofascial Pain (CMP), Post-Polio Syndrome (PPS) and related illnesses.

http://www.cssa-inc.org/

FM-CFS Canada is now operating as a volunteer run organisation, still focused on our key goals of patient, public and physician awareness. Unfortunately, we have been unable to retain John Ernst as our Executive Director, although John still volunteers by maintaining our website. We wish to thank John for his energy, enthusiasm and work over the last several years. At this time we have no paid employees.

Building on our past successes we will continue on the path of enhancing Physician, Patient and Public awareness.

http://fm-cfs.ca/

Tymes Trust is the longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the children’s section of the Dept of Health Report on CFS/ME (2002).

The Trust works with NHS Direct, ChildLine, ASPECT, the Nisai Virtual Academy, the Association of School and College Leaders, and has Partner ME Groups around the UK. It is also a member of the ME Alliance of charities and the Chief Medical Officer’s Working Group on CFS/ME.

http://www.tymestrust.org/aboutus.htm

The Welsh Association of ME & CFS Support is an umbrella body set up by the Welsh ME Support Groups in April 2001. It aims to provide a united voice for people with ME and CFS in Wales.

Our objectives are:
* to campaign within Wales on behalf of ME Groups and sufferers for better health, education, social and welfare services, and research
* to provide a forum for Welsh ME Groups to support each other
* to share information regarding ME in both Welsh and English
* to provide support to young people with ME in Wales

******************************************************************

Cymdeithas Cefnogi ME & CFS Cymru (The Welsh Association of ME & CFS Support). Fe’i sefydlwyd yn Ebrill 2001 gyda’r bwriad o roi llais unfrydol i bobl yng Nghymryu sy’n ddioddef o ME a CFS (Syndrom Llesgedd Cronig).

Ein amcanion
* ymgyrchu yng Nghymru ar ran grwpiau ac unigolion sy’n dioddef o ME am well iechyd, gwell gofal gan wasanaethau lles a chymdeithasol, ac ymchwil.
* darparu fforwm er mwyn i Grwpiau ME Cymreig fedru cynnal eu gilydd
* rhannu gwybodaeth ynglyn ag ME yn y Gymraeg a’r Saesneg.

http://www.wames.org.uk/

The National ME Centre is based in the Disablement Services Centre (DSC) at the Old Harold Wood Hospital Site, Romford, Essex.

In the early 1990′s, Dr Betty Dowsett (microbiologist) and Professor Leslie Findley (neurologist) were concerned by the growing number of patients they were seeing who were being diagnosed with CFS/ME and by the lack of guidance and support available to those patients. They employed a manager (Karen Walsh) and the NMEC was ‘born’.

http://www.nmec.org.uk/mecentre.html

Welcome to The ME Association. We provide information, support and practical advice for people who are affected by ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome), their families and carers. We also fund and support research, and offer education and training.

http://www.meassociation.org.uk/

A community for parents, parents-to-be and people considering parenthood who suffer from ME/CFS.

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.

http://www.mecfsparents.org.uk/

Chronic fatigue syndrome sufferers experience overwhelming exhaustion of both muscle and mind, flu-like symptoms, joint pain, muscle pain, migraine and insomnia. A special feature of CFS is that the condition waxes and wanes; this can occur within an hour, a day or over a period of years.

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.

http://www.cfsresearchfoundation.org.uk/

AYME (pronounced ‘aim’) is the largest charity for children and young people with ME/CFS, with over ten years of knowledge and experience about how this illness affects children and young people.

We know how important it is to have good, understanding friends, which is why AYME offers lots of friendship-supporting services like an online community, pen pals, e-mates, buddies and local get-togethers, all run by other young people with ME/CFS. They are all under 26 and have probably been through similar situations as you. Members get a bi-monthly magazine packed with young people’s news and views.

http://www.ayme.org.uk/

The 25% ME Group is a unique nationwide charitable organisation managed entirely by volunteers (most of whom are severely affected by ME) and was set up to offer support services to those severely affected by ME (Myalgic Encephalomyelitis), and their carers. The group is also supported by two part-time admin staff. We provide a wide range of services to people affected by severe ME many of whom are virtually housebound and/or bedbound.

http://www.25megroup.org

SupportME was established by a recovered ME/CFS sufferer as an online resource for sufferers of ME, Chronic Fatigue Syndrome and CFIDS. The site aims to provide information on the latest research updates from around the world; a library of articles on the condition; message boards for exchanging helpful information and chat; support group information; as well as make products that may be of interest, such as nutritional supplements more affordable and accessible.

http://www.supportme.co.uk

ME Research UK is a national charity funding biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS). Our principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME, but we also have a mission to ‘Energise ME Research’.

http://www.meresearch.org.uk/

“Action for M.E. is a UK charity working to improve the lives of people with M.E. We campaign for more research, better services and treatments. We provide information and support to people affected by M.E.”

http://www.afme.org.uk

The primary aim of BRAME, both in the UK and worldwide, is to create an increased awareness and understanding that ME/CFS is a very real and debilitating illness, and the consequences of living with ME/CFS, for the sufferer, carer and the whole family unit. BRAME also offers support and understanding to those affected by ME/CFS. By donating excess funds BRAME is also supporting much needed research into ME/CFS.

http://www.brame.org/