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, and 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. The funds are for the research only, as the project will make use of exisiting facilities at the Norwich Research Park, and patient examinations will be NHS-funded.
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 G93.3 as benign myalgic encephalomyelitis, along with post-viral fatigue syndrome. CFS (chronic fatigue syndrome) is a term that is listed in the alphabetical index with a reference back to ME. Use of this term tends to confuse the multi-system neurological disease ME with the symptom of chronic fatigue or with fatigue sydrome, which is a different disorder and is listed elsewhere in the WHO codes.
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 experts published a new set of criteria for ME in 2011, based on the widely-acclaimed Canadian Consensus Criteria for ME/CFS but with some important revisions. The ME International Consensus Criteria can be used for both diagnostic and research purposes.
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 biomedical 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 sickness 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. Treatment trials in Norway indicate that ME may be an autoimmune disease. It is already known that autoimmune diseases can be triggered by viral infection. These examples add to the mounting body of scientific evidence (some 5,000 science papers to date) of the biological processes at work in ME, yet there is no cohesive strategy for taking this research forward so that biomedical research findings may translate into treatments of the root cause of the disease and perhaps even prevention of the development of the disease.
Invest in ME is a small UK charity with a big idea!
At its 5th annual international conference in 2010, Invest in ME announced the proposal to set up a Centre of Excellence in the UK, combining biomedical ME research with clinical diagnosis and treatment for patients and training for health professionals. 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 will 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 organisations in Europe, Australia and USA. An exciting development from this collaboration is the formation of a Clinical Autoimmunity Working Group (CAWG) which had its inaugural meeting over the two days preceding the IiME 2012 conference on 1st June. 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.
Let's do it for ME! works in close cooperation with Invest in ME, see our campaign highlighted on their website here.
Also see our Press Release
