Colin Barton, Chairman of the Sussex & Kent ME/CFS Society
I have been involved in the medical field of Myalgic encephalopathy (ME) or Chronic fatigue syndrome (CFS) for more than 28 years and have seen many positive changes in the recognition and treatment of the illness(s).
Amazingly though we still hear of a few professionals that have problems recognising ME and giving appropriate advice to patients. Recently I took a call from a chap that had actually been told by a doctor to run as fast as he could between 20 lamp posts “to break the cycle”. This he tried to do and had to spend the following 4 days in bed when he could not even raise his head or arms off the bed. This chap has still to recover from the irresponsible advice he was given!
More than 100 GPs attended refresher sessions on ME/CFS earlier this year, organised by the Medical Education Department at Royal Sussex County Hospital working with the Sussex ME/CFS Society.
Our charity works closely with doctors and helped set up the NHS Sussex-wide CFS/ME Service that has dealt with nearly 4,000 referrals since 2005. The NHS team that has helped many towards improved health includes a specialist doctor, physiotherapists, occupational therapists along with a psychologist and administrator. There is also now a service helping children and young people with ME/CFS in Brighton.
ME can sometimes follow a viral infection or trauma and last for years and affects over 6,000 adults and children across Sussex, a number of whom are virtually housebound and in need of care. In recent years ME/CFS has been classified as a neurological disorder and the National Institute for Health and Clinical Excellence have issued guidelines.
Although things in the field are far from perfect much has been achieved for ME patients in general over the last 28 years. Our work continues to ensure that incidence like the one described never happen. People with ME do not ask for special treatment only the same given to others with chronic neurological conditions.