Things have come some way since the days when Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome (CFS) was considered a mystery. The debilitating and complex illness is now classified as a neurological disorder and there is a specialist NHS service in Sussex that has dealt with over 3,000 referrals since its inception in 2005.
Colin Barton, chair of the Sussex & Kent ME Society, was running a successful hotel business in 1981 when he became ill after contracting a glandular fever type illness that he never fully recovered from. “At one stage I was virtually bedbound and had to be helped around by our elderly housekeeper. I could not function physically or mentally for any useful period of time and had to give up my business when doctors were not sure what the problem was.”
In 1987, Clare Francis, the novelist, went public about having ME, and recognising the symptoms, Colin was able to get referred to a specialist and diagnosed.
The NHS Sussex CFS/ME Service, that was set up with help from the ME Society, is staffed by a specialist doctor and a multidisciplinary team of six that offer confirmation diagnosis and management courses as appropriate considering guidelines issued by the Institute for Health and Clinical excellence (NICE).