The role of the Sussex & Kent ME/CFS Society remains profoundly important…
Colin Barton -…
Nearly 150 of us spent a pleasant afternoon at the Brighthelm Centre in Brighton on October 6th…
The Sussex & Kent ME/CFS Society is a registered charity that informs, supports and represents those affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome (CFS) across Sussex and Kent.
Research commissioned by the Society, estimates that in Sussex and Kent there are over 10,000 adults and children that are affected by ME/CFS and that a good number of these are virtually house-bound and in need of care.
ME/CFS type illnesses have appeared in the medical literature since 1750 indeed Charles Darwin and Florence Nightingale are thought to have had the illness. The disease has been known by many names world-wide over the decades including Royal Free Disease when ME was reported in The Lancet after an outbreak at London’s Royal Free Hospital in 1955. These days the illness occurs more spasmodically.
ME/CFS can follow a viral infection or trauma. Symptoms include profound physical and mental fatigue, muscle and joint pain, difficulty with concentration and working memory – mild confusion, sleep and mood disturbances along with gastric and visual problems. The symptoms, which vary and fluctuate, can be exacerbated by over exertion or stress. With good management, most patients can significantly improve.
In recent years ME/CFS has been classified by the Department of Health and the World Health Organisation as a neurological disorder and the country’s Chief Medical Officer (CMO) set up an expert panel to carry out a review (Click here to see review).
The Medical Research Council (MRC) have also formulated a research strategy. In 2007 The National Institute for Health and Clinical Excellence (NICE) issued guidelines (Click here to see guidelines) and The British Association for CFS/ME (BACME) published guidelines for professionals during 2015 (Click here to see guidelines).
Locally, our society continues to work with the NHS specialist services of both Kent and Sussex that were established in 2005 with help from our organisation. There is also a service in Brighton for youngsters with ME/CFS.
The role of the Sussex & Kent ME/CFS Society remains profoundly important informing, supporting and representing patients. Services include help-lines, newsletters, meetings, Egroup, library and special interest groups etc. The charity keeps in contact with support agencies and medical professionals and has eminent doctors as advisors. We also enjoy the support of a number of patrons including MPs that work in the interests of ME/CFS patients.