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.
Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based at the University of East Anglia in the UK and aiming to work collaboratively with international biomedical researchers.
ME is multi-systemic disease classified by the World Health Organisation in the chapter on Diseases of the Nervous System (neurological) at WHO ICD-10 G.93.3, which lists post-viral fatigue syndrome and benign myalgic encephalomyelitis. CFS (chronic fatigue syndrome) is a term that is listed in the alphabetical index with a reference to G.93.3.
Different criteria for both ME (myalgic encephalomyelitis) and CFS (chronic fatigue syndrome) have been developed in different countries over the years. In the UK, CFS/ME has become an umbrella diagnosis for patients whose similar symptoms may have quite different causes, creating confusion for clinicians and researchers alike, and a barrier to useful scientific progress in this important area of human health. A group of international researchers has now developed a new set of criteria for ME, which can be used for both clinical diagnostic and research purposes – known as the International Consensus Criteria.
Some 250,000 people are thought to have ME or CFS in the UK - 25% of those are severely affected and 10% are children. Some are so severely affected that they cannot move, speak or swallow. Studies at Dundee and Newcastle Universities found that 40-44% of patients with a diagnosis of CFS/ME were misdiagnosed and some had other, potentially treatable illnesses. Development of a reliable diagnostic biomarker and objective biomedical tests for the disease is therefore a priority. This will be of huge benefit to doctors and patients alike.
Patients with severe ME have been largely excluded from research and also from treatment, as services have not been developed to meet their special needs and lack of research means that doctors have no evidence-based treatments to offer them.
In a UK study, ME was found to be the biggest cause of long-term absence from school. Research carried out at Dundee University and published in September 2010 showed evidence of persistent underlying viral infection in children, the same as previously found in adults in 2005. This adds to the mounting body of scientific evidence of the biological processes at work in ME, yet there is no cohesive strategy for taking this research forward so that these biomedical findings can translate into treatments of the root cause of the disease and perhaps even prevention.
Invest in ME is a small UK charity with a big idea!
In 2010, at the 5th annual international conference on biomedical ME research (which it hosts) Invest in ME announced its proposal to set up a Centre of Excellence in UK, combining biomedical ME research with clinical diagnosis and treatment for patients and training for health professionals. A year on and almost everything is in place for this exciting new venture to go ahead. Patient care will be at the heart of the centre and clinical diagnosis of patients will be made using the correct and up-to-date diagnostic criteria. An important aspect of the biomedical research is that distinct patient cohorts are properly defined and maintained. The research being proposed by the university would be of the most advanced possible – using virology and immunology as the key for examining patients.
Invest in ME has links with other researchers and institutes in Europe and Australia and has funded UK research by the innovative Whittemore Peterson Institute for Neuro-Immune Disease of Nevada, USA. Foundations are therefore already in place for international researchers to work collaboratively to advance science and provide the promise of better treatment and possible restoration of function and quality of life to a section of the community who have received very little help in the past, including children and the severely affected.
Do you want to help us make this big idea a reality?
Let's do it for ME!
How you can help
