Colin Barton, Chairman of Sussex ME Society says “People with ME do not ask for special treatment only that equal to others with chronic neurological conditions.”
I HAVE been involved in the medical field of Myalgic encephalopathy (ME) or Chronic fatigue syndrome (CFS) for over 28 years now and have seen many positive changes both 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!
Over 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. The programme included lectures on the history of ME, diagnosis, management approaches and research from specialist doctors and members of the NHS Sussex ME/CFS Service team. We hope that these training sessions will go some way to improving the understanding and treatment of ME.
Our charity works closely with local and national doctors in the field 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 that can sometimes follow a viral infection or trauma and last for years, 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.
A UK ME/CFS Research Collaborative was launched last year bringing together researchers, clinicians, charities and the Medical Research Council and aims to promote the highest quality research into ME/CFS. The Sussex ME/CFS Society is an associate member of this collaborative.
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 above never happen. People with ME do not ask for special treatment only that equal to others with chronic neurological conditions.
For more information about the Sussex ME Society, click here: