A campaign has been launched by patients with myalgic encephalomyelitis (ME) to raise awareness and vital funds for a centre of excellence, the first of its kind in Europe.
The centre aims to translate biomedical research findings into appropriate treatments for patients with ME as rapidly as possible. The research proposed will be of the most advanced possible with a focus on immunology and virology, building upon the research database and enabling new areas of cooperation with other biomedical research facilities.
A spokesperson for the campaign said:
“The prospect of this centre is an exciting new development for patients.
Classified by the World Health Organisation as a neurological disease, the effects of ME are multi-systemic, affecting the brain, heart, musculo-skeletal, immune, endocrine, gastrointestinal systems. ME patients may go on to develop autoimmune diseases, heart problems and rare cancers; many have orthostatic intolerance and postural orthostatic tachycardia syndrome.
Progress in research has been hampered in part by the complexity of ME, as studies have tended to look at the many and various symptoms, providing valuable insights into underlying pathology over the years, but not yet translating into treatments or discovery of the root cause of ME.
We believe the new centre will accelerate research by operating as a hub for national and international collaboration between doctors and scientists, progressing innovative and exciting new avenues for research enabled by advances in technology and science.
The centre would be based at the University of East Anglia in Norwich, with access to the excellent facilities of the research park on campus.
Patients seen at the new centre will be assessed according to the correct and up-to-date diagnostic criteria, which will provide the benefit of a positive diagnosis, rather than simply a diagnosis of exclusion of other causes, as well as the advantage of using well-defined patient cohorts for the research itself.
It will be a great relief for the many NHS doctors who are currently at a loss as to how to help patients presenting with such diverse and debilitating symptoms. As things stand, once given a diagnosis, there can be a tendency for either patient or doctor to attribute any new symptoms to the ME or CFS. Previous studies from UK universities have shown that up to 44% of patients given a diagnosis of CFS/ME were either misdiagnosed or had other, potentially treatable conditions.
The new centre will offer hope to some 250,000 people in UK with ME, particularly to the 25% who are severely affected, some unable to move, speak or swallow, and the 10% who are children. The campaign organisers also wish to honour the memory of two brave young women who were among those who have lost their lives to ME – Sophia Mirza died in 2005 aged 32, Lynn Gilderdale died in 2008 aged 31, having contracted ME at age 14. Specialist autopsies commissioned by their families showed similar damage in both cases to the spinal cord, dorsal root ganglia and sensory nerves.
We are immensely grateful to Invest in ME for taking such a positive step towards this goal and we hope that our campaign to achieve this will receive unanimous and widespread support”.
Press Release on Pressbox - Health
Press Release on Pressbox - Science
The press release can also be downloaded in pdf here.