M.E. Organisations
| International, National & Regional M.E. Organisations |
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Last Reviewed 15th August 2007
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| This reference contains details of international and national M.E. organisations. I have also listed regional support for England, the Channel Islands, Isle of Man, Northern Ireland, Republic of Ireland, Scotland and Wales. In addition you will find information on M.E. related Internet groups and e-mail lists at the bottom of the page. Please see the Links Directory for other forms of help and support. If the organisation does not have a Website or an e-mail address you will find their full postal address and/or telephone number listed. I work hard in bringing you up to date information, although I am sure you can understand that it is very difficult to keep track of thousands of organisations! Some of this data was lawfully supplied by The ME Association. Groups in England are listed by counties. Please note that the catchment areas of some groups extend into more than one county, so although you may live in one county, your nearest group may be based in another. If you would like your organisations details listed here or your groups details have recently changed, then please contact me at  . You may also like to Tell-A-Friend about this useful service. This information is provided for information only; M.E. Support may not support or endorse any information, services or treatments which may be encountered as a result of visiting or contacting them. Please read the Disclaimer for further information. |
| International Support |
| Leading Organisations |
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• Worldwide
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| National Support |
| Leading Organisations & Specialist Support Groups |
| • 25% M.E. Group www.25megroup.org "Support for those severely affected by M.E. We offer Fundraising: Support: Newsletter: Information" • 26+ Penpals Group For details please send a SAE to Mandy Jeffcock, 270 Stannington Road, Sheffield, S6 5FR. • Action for M.E. www.afme.org.uk “Action for M.E. is the UK's leading charity dedicated to improving the lives of people with M.E. We've been at the forefront of the campaign for more research, better treatments and services since 1987, and we provide information and support to people affected by M.E.” • Association of Young People with M.E. www.ayme.org.uk “AYME (pronounced ‘aim’) was founded in 1995 and is now the largest national charity for children and young people with ME aged 5 to 25. We provide support, advice and information to young people with ME and their families and friends. We help break the isolation that children and young people with ME feel, and make sure their voice is heard at all levels. We have won awards for our services to members and our volunteering opportunities.” • Blue Ribbon for Awareness of ME - BRAME For details please see International M.E./CFS Awareness Day by Tanya Harrison Chairperson BRAME. • Case History Research On Myalgic Encephalomyelitis "CHROME (Case History Research On Myalgic Encephalomyelitis) is a registered charity set up in 1994 with the aim of identifying as many severely disabled M.E. sufferers as possible in the UK and monitoring the course of their illness over a period of ten years. From this study a body of statistical data will be collected and analysed which will supplement medical research in important ways." • CFS Research Foundation www.cfsrf.com “The CFS Research Foundation is dedicated to supporting high quality research aimed at understanding the basis of CFS/ME and developing a reliable diagnostic test and specific treatments.” • Falcon Academy www.falconacademy.org.uk “We are a new not-for-profit organisation that has been created to provide educational (including social) opportunities for those whose lives have been affected by CFS/ME.” • F.O.R. M.E. www.forme-cfs.co.uk “Fund for Osteopathic Research into Myalgic Encephalomyelitis.” • Invest In M.E. www.investinme.org "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 (how it spreads) of M.E. This should lead to the development of: at least one 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." • Irish ME/CFS Support Group info@irishmecfs.org "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)." • Irish M.E. Trust www.imet.ie "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." • ME Accommodation and Care Homes www.meach.org.uk “The MEACH Trust was founded in September 2000 to provide specialised accommodation, assessment and care for patients suffering from the severe effects of ME.” • ME Research UK (ME Research Group For Education And Support/MERGE) www.meresearch.org.uk "ME Research UK (ME Research Group For Education And Support/MERGE) is a national UK charity funding biomedical research into Myalgic Encephalomyelitis (also known as ME/CFS) and related illnesses. 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'.' • Northern Ireland Campaign for ME/CFS Healthcare mecfsni@ntlworld.com Please contact them for further information. • Northern Ireland ME Association www.nimea.org "The Northern Ireland ME Association (NIMEA) exists to offer support and information to all those affected by ME. It was established in the mid 1980's by a group of people with the condition who organised their own self-help groups. Initially affiliated to the UK ME Association, NIMEA opened a Belfast-based administration office in 1989. In June 2000, NIMEA took the decision to become a totally independent charity registered in Northern Ireland, to enable it to provide the best possible local services for those with ME in the region." • Partnership for Research in CFS and ME www.prime-cfs.org "The PRIME Project is a collaboration between patients, carers, researchers and service providers who share a commitment to improving our understanding of ME/CFS." • reMEmber www.remembercfs.org.uk "Helping people with ME (myalgic encephalomyelitis) -also known as CFS (chronic fatigue syndrome) - get the best possible treatment to enable them to lead full and healthy lives." reMEmber also offers Regional Support to M.E. sufferers in East and West Sussex, Surrey, Kent and Hampshire. • Research into Myalgic Encephalomyelitis www.erythos.com/RiME "Campaigning for Research into Myalgic Encephalomyelitis" • SEARCH M.E. www.search-me.org.uk "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." • The Grace Charity for M.E. www.thegracecharityforme.org "The Grace Charity for M.E.is a Kent based charity, founded on Christian prayer. It has produced a document to support sufferers who wish to refuse psychological therapies. There is also a survey to fill in regarding helpful treatments and doctors." The Grace Charity for M.E. also offers Regional Support to M.E. sufferers in Kent. • The ME Association www.meassociation.org.uk “The ME Association provides information and support to people with ME through literature, a quarterly magazine, and our telephone helpline ME Connect. We are also involved in campaigning on issues such as benefits, research and the importance of early diagnosis. The MEA also funds research into the underlying physical causes of ME through a designated research fund.” • The ME Poetry Group For details please send a SAE c/o Edna Carmichael, 81b Earle Street, Yeovil, Somerset, BA20 1JW. • The One Click Group www.theoneclickgroup.co.uk “One Click works to benefit and to deliver the Voice of the ME/CFS community throughout the world, both on the internet and in the field. We carry breaking ME/CFS news, information and archive resources.” • The Young ME Sufferers Trust www.tymestrust.org "In 1989, two young people with ME published the first Tymes Magazine to give children with ME a voice. For the first time, there was a place for them to share experiences and needs. Tymes Trust became fully registered in June 2000 and now offers a full range of services. We also regularly supply expert information and are consulted by doctors and education specialists as well as families and the press." • Welsh Association of ME & CFS Support www.wames.org.uk “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.” • Young Action Online www.youngactiononline.com "YA Online is a personal initiative of Jane Colby and Mark Colby. We wanted to create a concentrated resource of solid information from creditable sources for young people with ME, their families and professionals, using the internet to make that information widely and freely available. YA Online documents are also available by post; Tymes Trust provides additional services by phone and mail." |
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| Regional Support |
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| England |
| Groups in England are listed by counties. Please note that the catchment areas of some groups extend into more than one county, so although you may live in one county, your nearest group may be based in another. |
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• Avon
The Forget ME Nots (Ashford) E-mail: TheforgetMEnots@aol.com
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| Channel Islands |
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| NO KNOWN GROUPS |
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| Isle of Man |
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| • Fiona Masheter, Ballahias, Ballanas Hill, Lower Foxdale, Isle of Man, IM4 1BE. Tel: 01624 801718 |
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| Northern Ireland |
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| Fermanagh ME Support Group E-mail Maureen Swift at mailto:%20maureenswift@ukonline.co.uk Portadown and Armagh & Dungannon M.E. Support Groups Website: http://homepage.ntlworld.com/jean.richardson2/mesg |
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| Republic of Ireland |
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| NO KNOWN GROUPS |
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| Scotland |
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| Aberdeen ME Group E-mail Elaine Cheshire at elainecheshire@hotmail.com Aberdeen and District Fibromyalgia Support Group Call Olive Lang on 01224 319970 Aberdeen Myalgic Encephalomyelitis Self Help Group Website: www.edmesh.org.uk Bishopbriggs ME Group, East Dumbartonshire Call Jennifer Nicholson on 01415 636544 Cathcart ME Support Group (covers South Glasgow and Lanarkshire) Call John McKnight on 01416 322486 Central Scotland ME Support Call Alexanda Russell daytime only on 01786 816478 Dumfries and Galloway M.E. Network Website: www.dgme.co.uk Edinburgh M.E. Self-Help Group Website: www.edmesh.org.uk Falkirk ME Self Help Group Glasgow Chronic Fatigue Syndrome/M.E. Meetup Group Website: http://cfs.meetup.com/31/ Glasgow West ME Support Group E-mail Ewan Dale at mailto:%20ewandale@yahoo.co.uk Lanarkshire ME Support Group E-mail Jane Giakoumakis at janeyannis@talktalk.net ME East Kilbride Group c/o East Kilbride Resource Centre, 14 Pankhurst. Tel: East Kilbride Resource Centre 01698 300390 ME Support North East Fife E-mail Catherine Lewis at mailto:%20catherine@claremont-cupar.freeserve.co.uk M.E. Recovery Group (Covers the Scottish Borders) Website: www.onlineborders.org.uk/site/microsites/merg Old Kilpatrick and Dumbarton Call Susan Keenan on 01389 875011 Paisley & District ME Support Group E-mail Theresa Bates at mailto:%20theresa.bates1@ntlworld.com • SEARCH M.E. Website: www.search-me.org.uk ScotME "Seeking Information and Promoting Communication" E-mail: scot.me@ntlworld.com West Lothian ME Self-Help Group Call David Dall on 01506 500817 |
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| Wales |
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| Chester ME Self Help (see Cheshire, England) Clwyd ME Support Group Website: www.clwydme.net Glamorgan ME Support Group E-mail Christalla Davies at christalladavies@aol.com HelpmeWales E-mail List: http://health.groups.yahoo.com/group/helpmewales Mid and West Wales ME Group Website: www.midwalesmegroup.org.uk North West Wales ME Group E-mail Karl Krysko at karlkrysko@yahoo.co.uk |
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| Online Support |
| Internet Groups & E-mail Lists |
| • AlfredblasiprotocolFMSCFS http://health.groups.yahoo.com/group/AlfredblasiprotocolFMSCFS "This is group is dedicated to discussion of recovery from Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS or CFIDS) or M.E, using the protocol developed by Alfred Blasi. Whether you are a sufferer or are interested in learning more, you are welcome here. This is an independent, non-commercial group." • Brainfog www.brainfog.org “Brainfog flies in the face of all preconceived notions that the illness ME/CFS is a creation of psychological disorders. Although we often have our bad days they shouldn't necessarily be mistaken for depression. The Forum & Chatroom are full to the brim of support, cyber shoulders to cry on, many many laughs, new friends, Gatherings, Pringles and ooooodles more !!!” • CFIDS/FM Singles http://health.groups.yahoo.com/group/CfidsandFMSingles “This group is designed to be BOTH a DATING SITE and a SUPPORT GROUP! The purpose of this site is to unite singles with CFIDS/FIBRO.who are looking for a possible companion/mate with the same illness.” • CFSFMExperimental http://health.groups.yahoo.com/group/CFSFMExperimental "An information and discussion list for chronic fatigue syndrome [CFS,cfids] and fibromyalgia [fm] patients who are taking experimental medical treatments or who are interested in learning about them. The basis of this group is respect for each other and for all experimental treatments." • CFS-20s www.angelfire.com/me4/cfs20s “The home pages of CFS-20s, an Internet mailing list for 20-somethings with CFIDS/CFS/ME and related conditions.” •Christians with Invisible Illnesses - Cmcs-EI www.members.shaw.ca/zonaszone/cmcs “We are a small group of christians who belong to an e-list called Cmcs-EI. We all have some kind of invisible illness like Multiple Chemical Sensativities, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Multiple Sclerosis, Depression or other types of illnesses that are chronic and debilitating. This list has become a place for making new friends and keeping in touch with old, for posting prayer requests and discussing other things of interest.” • Christians with M.E. www.cwme.co.uk "Cwme stands for Christians with M.E. It's primary design and goal is to provide access to an email distribution list, which can be subscribed to. It allows Christian suffers of M.E. / C.F.S. and /or Fibromyalgia to contact each other via email for help / support or just for a good old chat by sending an email to one address." • Foggy Friends www.foggyfriends.org “Foggy Friends is a support and information website for ME, CFS, CFIDS and PVFS sufferers. Member registration is fast, free and easy. Register today to gain friendly support from hundreds of people sufferering with the same illness. Knowing you are not alone can be a great comfort.” • Friends International www.mosken.com “ME/CFS and Chronic pain website, offers international online support group with upbeat conversation, information links, research of ME and chronic pain.” • Gay Chronic Fatigue Syndrome Group http://health.groups.yahoo.com/group/Gay_Chronic_Fatigue_Syndrome_Group "Chronic Fatigue Syndrome is a difficult and challenging illness that affects every aspect of our lives. Gay people with CFS also face additional challenges added onto what others with this illness have to deal with. Finding support and other people with this illness to feel connected to can be difficult. I am hoping gay people and others in their lives will find it safe here in this group to discuss anything they like, while always treating others with the respect and kindness. I know the group may start out small, but I am hoping as time goes on it will grow. Regardless of the number of people in the group, I am hoping that by joining you will find support, information and companionship here." • Growing up with M.E. www.groups.google.com/group/growingupwithme "Growing up with M.E. is an online group especially for younger people with M.E. to share experiences of their illness, tips & advice, make friends all over the world and have some fun too." • How to cope with ME http://uk.msnusers.com/HowtocopewithME/benefits.msnw “This site was made to give advice and information to fellow suffers off this illness, with knowledge that will help them with an understanding off this illness that only a few people fully understand what it is like to be ill.” • IMEGA-e http://health.groups.yahoo.com/group/imega-e "The IMEGA-e group consists of over 150 ME/CFS support group and charity officers around the UK who share news and information. Also on this group there is representation from the national ME/CFS charities and well known doctors in the field." • Infections http://health.groups.yahoo.com/group/ME-CFS-FMS_infections “The purpose of this group is to highlight the need for patients with ME/CFS/FMS to make sure they are adequately tested for hidden zoonotic infection in particular Borreliosis/Lyme Disease.” • Island of Fog www.island-of-fog.org/phpbb3 “The Island of Fog has been created in response to the needs of ME/CFS sufferers who are over 18. It is here to provide mutual support, fun, caring and a place where we can discuss anything - including adult related topics - in a safe, friendly and truly democratic environment.” • LocalME http://health.groups.yahoo.com/group/LocalME “LocalME is a friendly online meeting place for local group contacts and those with a keen interest in what is happening at local level. The aim of this UK forum is to encourage communication across the country, in the hope that everyone can benefit from sharing news, information, hopes, concerns and campaigning ideas.” • me-2-u http://health.groups.yahoo.com/group/me-2-u "A place for all PWME ,FMS and PVFS, carers and families to meet and discuss their problems and current affairs relating to the illness." • ME/CFS Apple Mac User Group UK http://groups.yahoo.com/group/ME-CFS_AppleMacUserGroupUK "The ME/CFS Apple Mac User Group offers technical support and advice, as well as a forum to discuss all things relating to Apple computers and iPods, especially for people living with ME/CFS, their friends and carers." • MEChat www.mechat.co.uk “Pages written by the members, for the members, of MEchat, an email support list for ME sufferers and their families in the UK” • M.E. UK http://uk.groups.yahoo.com/group/me_uk "Hi there I have set this group up for people, who have me / chronic fatigue syndrome and live in the uk we can talk about our experiences, with this terrible illness weather its funny or sad we are here to support and help each other. I am 25 and I have m.e for 4 and a half years and I live in southeast London. We can talk about anything you like and it don't have to about m.e. And anyone any age is welcome! Please join and don't forget to introduce yourself ! maybe we could make some friends along the way !!" • War Against M.e For details please see Children & Youth With M.E. by Louise-Jane Morgan of War Against Me. |
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