Sussex & Kent ME/CFS Society
The Sussex & Kent ME/CFS Society is a British patient charity which informs, supports and represents ME/CFS sufferers in Sussex and Kent. The charity works with the national patient groups Action for ME, and worked with Association of Young People with ME (before it merged with Action for ME). The charity is a member organisation of a number of local and national committees and working groups including the NHS Kent & Medway CFS/ME Service and the NHS Sussex-wide CFS/ME Service along with the British Association for CFS/ME (BACME) and the UK CFS/ME Research Collaborative.
Aims[edit | edit source]
The Sussex & Kent ME/CFS Society aims to inform, support and represent patients and their families.
They provide services including helplines, newsletters, meetings, members E-group, library and special interest groups such as Young ME, Yoga, Christian, Gay and Social. The charity keeps in regular contact with support agencies and medical professionals. Their patrons include three Brighton & Hove MPs who are members of an All Party Parliamentary Group on Myalgic Encephalomyelitis which works in the interests of ME/CFS patients in the United Kingdom.
Funding[edit | edit source]
The Sussex & Kent ME/CFS Society is a constituted registered charity since 2000. It's charity number is 1082681. It has received funding from the Big Lottery Fund, as well as regular support from local authorities, businesses and trusts. Most of their funding however comes from members' annual subscriptions and donations.
Notable people[edit | edit source]
Patrons[edit | edit source]
The Sussex & Kent ME/CFS Society has seven patrons:
- Sir Andrew Bowden MBE
- Simon Kirby MP
- Jenny Seagrove
- Russell Grant
- Caroline Lucas MP
- Professor Anthony Pinching
- Dr Keith Hine
Medical Advisors[edit | edit source]
The Sussex & Kent ME/CFS Society has five medical advisors:
- Professor Leslie Findley
- Professor Esther Crawley
- Dr Gabrielle Murphy
- Dr Alastair Miller
- Dr Alan Stewart
History[edit | edit source]
The Sussex & Kent ME/CFS Society was founded in 1987 and was granted charity status in 2000.
Online presence[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
Action for ME (AfME) - Action for ME is a British non-profit organization that was set up in 1987 as The M.E. Action Campaign. Its founders were Martin Lev, Sue Findlay and Clare Francis. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue. It then changed its name in 1993 to Action for ME.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.