Corporate friends
The Corporate Friends of ME Research UK scheme is designed for larger independent organisations — corporations, larger registered charities, companies, businesses — that share our medium-to-long-term aim of a medical breakthrough in ME/CFS, and recognise that only biomedical research can achieve this goal.
If you would like more information about registering your organisation as a Corporate Friend of ME Research UK, please contact our Administrator. Also, read our page of advice on ways companies can help ME Research UK.
Although it exists side-by-side with our Individual Friends organisation, Corporate Friends differs in the collective power it brings to the drive to energise ME research, exemplified by the fact that our Corporate Friends collectively represent many thousands of patients and carers. It is also designed to be a vehicle for the increasing number of companies that recognise ME/CFS as an illness, the incidence and cost-of-care of which have important implications for their customers and employees.
We thank the organisations listed below for their willingness to support the thrust towards a biomedical breakthrough in the investigation, diagnosis and treatment of ME/CFS.
Blue Ribbon Awareness of ME (BRAME) — UK
BRAME was founded in 1995, and is an integral and active participant in International ME/CFS Awareness Day on 12 May, a time when the universal symbol of the Blue Ribbon, or the BRAME enamel badge, is worn and promoted around the world. Its aims are to create awareness and understanding that ME/CFS is a very real illness; to publicise and create awareness of the severity and widespread nature of the illness and its consquences; to generally offer support, understanding and friendship to those affected; and to promote the international links with individuals, groups, medical professionals and researchers.
By wearing your Blue Ribbon or BRAME enamel badge you are supporting all those affected by ME/CFS around the world, and participating in what has truly become a Worldwide ME/CFS Awareness Campaign.
Contact details
Tanya Harrison, Chairperson, BRAME, 30 Winmer Avenue, Winterton-on-Sea, Great Yarmouth,
Norfolk NR29 4BA, UK
Tel/Fax: 01493 393717
E-Mail: info@brame.org
Web: www.brame.org
Fibromyalgia and Chronic Fatigue Syndrome Foundation — Spain
The Fibromyalgia and Chronic Fatigue Syndrome Foundation was founded in 2002 by a group of researchers, doctors, lawyers and economists as an initiative to support scientific and social advances in Fibromyalgia and Chronic Fatigue Syndrome, two independent and quite distinct illnesses yet with certain features in common. The Foundation has been classified as a “research-orientated health and welfare organisation
” by the Autonomous Government of Catalunya (registration number 1724), and the research and welfare activity it develops is widely recognised as being of an investigative, informative and educational nature. Dr Anna M Cuscó is Executive President, and the worldwide famous soprano Dame Montserrat Caballé is Honorary President of the Foundation.
Contact details
Fibromyalgia and Chronic Fatigue Syndrome Foundation, Calle Joan Güell, 184 Local 27, 08028 Barcelona, Spain
Tel: +34 93 419 08 33
E-mail: info@fundacionfatiga.org
Web: www.fundacionfatiga.org
Alison Hunter Memorial Foundation — Australia
The Alison Hunter Memorial Foundation Limited (ACN 085 075 305) was established in 1998, and 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 of the illness in the community. The organisation is an enduring memorial to Alison Hunter and all those whose lives have been devastated by ME/CFS. Alison died in 1996, aged 19, from complications arising from ME/CFS — such complications are rare and only present in a severe subgroup. Alison courageously fought ME/CFS for ten years and was an unstinting advocate for young people.
Contact details
Alison Hunter Memorial Foundation, PO Box 6132, North Sydney, NSW 2059 Australia
Tel: +61 2 9922 4054
Fax: +61 2 9922 4054
E-mail: chunter@ahmf.inspired.net.au
Web: www.ahmf.org
ME/CFS Foreningen (Danish ME/CFS Association) — Denmark
ME/CFS Foreningen is the Danish ME/CFS Association. It was founded in 1992 and has almost 500 members at present. The purpose of the association is to provide factual information about ME/CFS to patients, families, healthcare professionals and social authorities, and to offer support for patients and their families. The association offers a magazine published four times a year, research and coping information about ME/CFS, and information for doctors, local support groups, and patient advisors.
Contact details
ME/CFS Foreningen, Rådhustorvet 1, 1. sal, 3520 Farum, Denmark
Tel: 44 95 97 00 (mandag og torsdag kl. 10-12), Fax: 44 95 97 74
E-mail: mail@me-cfs.dk
Web: www.me-cfs.dk
25% Group for Severe Sufferers — UK
The 25% ME Group exists to support all who have the severe form of ME and those who care for them. This includes people who are housebound, bedbound and wheelchair users. There are approximately 200,000 people in the UK who suffer from ME and, while some recover, approximately 25% remain long-term ill and severely disabled by the disease — hence the 25% Group. Many people with ME are left isolated, housebound or even bedbound by the effects of the illness, which affects people from all walks of life, all age groups and can strike when least expected. At present, the 25% Group is the only organisation concerned specifically with the needs of the severely affected.
Contact details
25% ME Group, 4 Douglas Court, Beach Road, Troon, Ayrshire KA10 6SQ
Tel: 01292 318611
E-mail: enquiry@25megroup.org
Web: www.25megroup.org
Search ME — UK
The charity, Search ME, is a relatively new addition to the world of ME/CFS charities — in effect, a new kid on the block. As Robert Sclater, the Director/Chairman, explains, “We have joined the fight to raise funds through our involvement in the music industry. It is our intention to continue to support valid research programmes in the quest for a cure for this devastating disease. We also intend to continue to take an active part in the political process by maintaining our place on the Cross Party Group on ME in the Scottish Parliament.
” Please visit their website to find out more about their activities and plans for the future.
Contact details
Search ME, 98 Forker Avenue, Rosyth, Fife, KY11 2UG, UK
E-mail: info@search-me.org.uk
Web: www.search-me.org.uk
Bundesverband Chronisches Erschöpfungssyndrom (CFS/CFIDS/ME) — Germany
Bundesverband Chronisches Erschöpfungssyndrom is a large independent registered charity which represents more than 1000 members all over Germany. The aim of the self-help organisation is to support patients with ME/CFS by individual counselling, to raise public awareness and to provide information for physicians, health care institutions and politicians, as well as to promote biomedical research on this illness. The publications of Fatigatio — a members’ magazine ‘CFS-Forum’ and numerous brochures which are based on the most recent research findings — are also distributed by the self-help organisations of Austria and Switzerland.
Contact details
Fatigatio eV, Bundesverband Chronisches Erschöpfungssyndrom (CFS/CFIDS/ME)
Goethestraße 26-30, 10625 Berlin
Tel: 0049-30-3101889-0
Fax: 0049-30-3101889-20
E-mail: info@fatigatio.de
Web: www.fatigatio.de
MEACH Trust — UK
The MEACH Trust (ME Accommodation and Care Homes) is a registered UK charity (No. 1082636) whose aim is to establish and operate a 20-bed residential centre for people severely affected by ME. Residents will be encouraged and supported in the development of personalised care programmes. By combining these with medical and palliative interventions, they will be enabled to achieve self-management of their illness and partial-to-total rehabilitation. The experience gained through these programmes will provide guidance to all ME sufferers and their carers.
Contact details
MEACH Trust, 25 Turnpike Way, Ashington, W Sussex RH20 3QG, UK
Tel: (before 7pm) 01903 891386
E-mail: info@meach.org
Web: www.meach.org
Invest In ME — UK
An independent group campaigning for biomedical research into Myalgic Encephalomyelitis as defined by WHO-ICD-10-G93.3. Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the causes, development, effects and epidemiology of ME. This should lead to the development of a universal ‘Thumb-Print Test’ that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness.
Contact details
Tel: Kathleen McCall 02380 251719
Web: http://www.investinme.org
Irish ME Trust — Republic of Ireland
The Irish ME Trust provides information and support to sufferers 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 biomedical research into their condition, as well as the social and community care support that they deserve.
Contact details
Abbey House, Abbey St, Dublin 1
Tel: 1890 200 912
From UK: 00-353-1 401 3629
Fax: 00 353 1 401 3736)
E-mail: info@imet.ie
Web: www.imet.ie
Norges Myalgisk Encefalopati Forening (Norwegian ME Association) — Norway
The Norwegian ME Association, Norges Myalgisk Encefalopati Forening, was founded in 1987. At the end of 2003 there were 743 members from all over the country. It has established self-help groups in many counties, and once a year all the group leaders gather in Oslo for an update seminar, and to share their experiences and get new inspiration. Its office is in Oslo, centrally located behind the university. It provides factual information about ME to lay and health professionals, and helps and supports people with ME and their families and carers. Twice a year, it publishes a newsletter, and a magazine ‘ME-News’ with medical articles and useful information. It works both nationally towards health authorities and government, and internationally to raise awareness of the seriousness of ME. The association is also a member of the Norwegian Federation of Organisations of Disabled People.
Contact details
Postal address: Norges ME Forening, Eiksveien 96 A, 1361 Østerås
Office and visiting address: Kristian Augusts gt. 19, Oslo
Tel: 22 20 34 24
Fax: 22 20 34 25
E-mail: post@me-forening.no
Web: www.me-forening.no
Northern Ireland Campaign for ME/CFS Healthcare — UK
Northern Ireland Campaign for ME/CFS Healthcare is a patient-based organisation, with around 100 members throughout Northern Ireland, which seeks to promote awareness of ME, and fights for proper diagnosis, treatment and medical/social support for victims of ME. We also campaign for decent Social Security benefits for people with the illness, and are involved in supporting members fighting to obtain benefits. We publish a range of literature, including Professor Malcolm Hooper’s ‘Engaging with ME’ and Dr Betty Dowsett’s ‘Guidelines for Patients’. We seek to promote greater understanding of the illness among the medical profession and patients, and to facilitate this we hold yearly conferences which have international clinicians and researchers on ME as speakers. We believe the key to progressing understanding and recognition of ME, as well as finding effective medical treatments, is proper high-quality biomedical research into the biology of the illness, published in peer-reviewed journals. To further this aim, we have set up a research fund to support biomedical research into ME, and this fund donates towards ME Research UK’s wish list of biomedical research projects. We also lobby public representatives in all matters concerning ME, as well as for more biomedical research into the illness.
Contact details
Derek Peters, Northern Ireland Campaign for ME/CFS Healthcare, 3A Stranmillis Court, Belfast BT9 5EU
Tel: 028-90668688
E-mail: mail@mecfsni.plus.com
The Young ME Sufferers Trust (Tymes Trust) — UK
The Young ME Sufferers Trust (Tymes Trust, Registered Charity 1080985) is the longest established national UK service for children and young people with ME and their families. The Trust’s entire professional team give their time free of charge. We work with doctors, teachers and other specialists, and we played a major role in producing the children’s section of the Dept of Health Report on CFS/ME (2002). Lord Clement-Jones CBE, Liberal-Democrat House of Lords Spokesman on Health, is the Tymes Trust Patron, and Tymes Magazine is recommended by Shirley Conran OBE and ME specialist Dr Darrel Ho-Yen. The Patron of the Tymes Trust Friends is the Queen’s cousin Lady Elizabeth Anson. The Trust believes in the vital importance of research into the physical nature of ME, which is why we have become a Corporate Friend of ME Research UK.
Contact details
Tymes Trust, PO Box 4347, Stock, Ingatestone, Essex, CM4 9TE
Tel/Fax: 01245 401080
Web: www.tymestrust.org
The Myalgic Encephalomyelitis Society of America — USA
The ME Society of America is an organisation 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 ME Society of America publicises research and case definitions on the disease regardless of the name under which they were published. We do not play the role of a support group. We are a research-information and advocacy organisation only, and we publish the American ME Review.
Contact details
Maryann Spurgin, PhD (Director), ME Society of America, PO Box 44402, Shreveport, LA 71134, USA
E-mail: MESocofAmerica@yahoo.com
Web: www.cfids-cab.org/MESA/index.html
The Irish ME/CFS Association — Republic of Ireland
The Irish ME/CFS Association 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. Most of the money we have raised for research has been raised by selling the blue ribbons, obtained in conjunction with other useful materials from BRAME. The blue ribbons have also helped us with our awareness campaign: we have organised over 300 interviews involving over 100 families affected by ME since 1996: most of these were in and around (Blue Ribbon) ME Awareness Week.
The group stresses that it wishes to see a cure for ME, for more effective treatments and for a diagnostic test for the illness. In the interim, however, it wants the truth to be universally known about the lack of effectiveness, and possible dangers, of graded exercise programmes (and CBT programmes based on them), and for the term ‘Chronic Fatigue Syndrome’ to be dropped.
Contact details
Vera Kindlon (Chairperson), Irish ME/CFS Association, PO Box 3075, Dublin 2, Republic of Ireland
Tel: 01-2350965
From UK: 00-353-1-2350965
E-mail: info@irishmecfs.org
Associated New Zealand ME Society (ANZMES Inc.) — New Zealand
ANZMES Inc. is 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. On our website, you will find a range of useful information for sufferers, caregivers, friends and medical professionals. A range of publications is available from ANZMES. The principal publication is ‘Meeting Place’, the ANZMES quarterly journal to members. The current and future issues of ‘Meeting Place’ and other publications are available by joining ANZMES and subscribing.
Contact details
ANZMES Inc., PO Box 36–307, Northcote, Auckland, New Zealand
To leave a message please phone (09) 269 6374
For urgent enquiries or to speak to our National Coordinator directly please phone (09) 486 2574.
E-mail: info@anzmes.org.nz
Web: www.anzmes.org.nz
Association of Young People with ME (AYME) — UK
AYME was founded in 1995 and is now the largest national charity for children and young people with ME aged 5 to 25. We provide information, support and advice 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. Our philosophy is that we are a young people’s organisation run by the members for the members. Over 300 AYMErs of all ages and abilities take an active part in running the organisation, building-up their skills, confidence and self-esteem.
Contact details
Association of Young People with ME (reg. charity 1082059), PO Box 605, Milton Keynes, MK2 2XD, UK
Tel: 08451 23 23 89
Fax: 01908 274136
E-mail: info@ayme.org.uk
Web: www.ayme.org.uk
