The Sussex ME Society who care for people affected by Myalgic encephalopathy (ME) or Chronic fatigue syndrome(CFS) is marking its 30th anniversary.
The organisation was founded in 1987 when people came together supported by hospital Consultant, Dr Keith Hine and Brighton Kemptown MP, Sir Andrew Bowden MBE.
The charity that has helped hundreds affected by the illness including those in the LGBT+ communities is now one of the most successful regional ME charities in the UK and is presently assisting research being carried out by Brighton and Sussex Medical School.
Dr Keith Hine commented: “I was appointed as a Consultant Physician at Cuckfield Hospital in 1984. On my first weekend in Sussex I was asked by our local GP to see a patient with probable ‘Myalgic Encephalomyelitis’. I visited this patient at home and found a fit-looking man who had been pole-axed by a condition of which I had no experience. Clinical examination was normal but here was a genuine patient with extreme fatigue who was unable at times to even get out of bed. I had to agree that this fitted the description of ‘ME’.”
“This experience engendered an interest in CFS/ME which has remained with me throughout my consultant career. When central government released a considerable amount of money to establish regional CFS/ME services, I was involved with Colin Barton and other members of the society in developing this service locally.
“I retired from the NHS in 2008 but I have continued to see patients privately in the Nuffield Hospital. Since 1984 I have calculated that I have seen well in excess of 1,000 patients with CFS/ME.
“As a consequence of the Chief Medical Officer’s report and subsequently the NICE report, I have seen GP’s become more aware of the condition and they have diagnosed and instituted appropriate management earlier. I suspect that this early involvement is the reason that we have seen a reduction in the proportion of patients we would classify as ‘severe’.
“I have now ‘hung up my stethoscope’ and retired completely from clinical work. I am grateful to Colin for his support over the years and I wish the Society a great future.”
After revealing her diagnosis of ME, actress Martine McCutcheon, said: “I want to give hope to ME sufferers, even people who don’t know what they have got.
“I want them to know that they are not going mad and that they can get better. You can live a normal and good life again.”
Society patron, the actress Jenny Seagrove, added: “Sussex ME Society provides absolutely vital support to those people in society who suffer this debilitating and much misunderstood condition.
“At last research is being done into ME and also into the plasticity of the brain and nervous system, so perhaps hope will be allowed to shine its light into the darkness of some people’s lives.”
Former hotelier and Society chairman, Colin Barton, said: “We have seen many improvements for those with ME/CFS over the years but there is still a way to go before patients are provided with services equal to those automatically afforded to those with other chronic disabling illnesses.”