Vital role for HYMS in project to help ME sufferers
Posted on 30 March 2006
HYMS will be part of a 'research observatory' gathering comprehensive data on a range of important clinical and social factors which affect people suffering from Chronic Fatigue Syndrome (CFS) also known as Myalgic Encephalomyelitis (ME).This is a patient-led project and it enables us to use our network of General Practices which is one of the great strengths of HYMS
Professor Peter Campion
The three-year project, sponsored by the Action for ME charity will include a disease register. It will also yield new epidemiological and social research to the meet the needs of the CFS/ME community. It has been given a £500,000 grant by the Big Lottery Research Grants Programme.
The study, which involves teams from the University of East Anglia and the London School of Hygiene and Tropical Medicine, aims to increase availability of information about the illness, and reduce the stigmatisation, which can arise from a lack of understanding of the disease. It is estimated that ME affects up to 240,000 people in the UK.
The HYMS element of the study will involve establishing links with GPs to encourage them to report new cases of CFS/ME in order to build up a register of patients. Some will be interviewed to assess the impact of the disease on the quality of life of both patients and their carers, and how this can influence the standard of care.
Professor Peter Campion, Foundation Professor of Primary Care Medicine at HYMS, said: "This grant is wonderful news because it has traditionally been difficult to attract funding for research into CFS/ME.
"This is a patient-led project and it enables us to use our network of General Practices which is one of the great strengths of HYMS."
Project leader Dr Derek Pheby said: "The establishment of a CFS/ME Observatory is a major step forward for Action for ME, and will bring new hope for people with ME. It will enable Action for ME to fund, for the first time, a coherent programme of epidemiological and social research on a national basis, as well as to generate insights to ensure that services now being developed for people with ME are based on the best and most effective practices."
Notes to editors:
- HYMS is a joint venture between the Universities of York and Hull and the NHS. It admitted its first medical students in 2003 and is consolidating its research base with strong collaborative links in and between the two universities and clinicians in the region.
- Big Lottery Fund is the joint operating name of the New Opportunities Fund and the National Lottery Charities Board (which made grants under the name of the Community Fund). The Big Lottery Fund, launched on 1st June 2004, is distributing half of all National Lottery good cause funding across the UK.
- The Big Lottery Fund is building on the experience and best practice of the merged bodies to simplify funding in those areas where they overlap and to ensure Lottery funding provides the best possible value for money. To date, the two merged Funds have committed more than £5 billion to initiatives with national, regional and local partners from the public, voluntary, charity and private sectors, with a particular focus on disadvantage.
- The aim of Research Grants Programme is to fund high quality medical and social research in the areas of health and social well being. The Research Grants Programme make grants directly to charities and voluntary sector organisations, encouraging them to build their research capacity by working in partnership and developing links with the research community. This programme is now closed.
- UK-wide, the Big Lottery Fund will distribute funding worth over £2.3 billion through its new programmes and allocations between 2006-2009. Regularly updated information on the Big Lottery Fund's new programmes is available at www.biglotteryfund.org.uk
- ME / CFS affects almost a quarter of a million people in the UK. Up to 25% are either housebound or bed-bound and unable to look after themselves. In addition to severe fatigue, the condition can be accompanied by a wide range of debilitating symptoms, from cognitive dysfunction to chronic pain.
- Action for ME is the UK's leading charity dedicated to improving the lives of people with ME. Go to www.afme.org.uk for further details.