We are currently campaigning on a number of issues such as improving understanding, early diagnosis, treatment, severely affected people and socially excluded people. In particular we are focusing on:
It's believed by doctors that M.E. has existed for hundreds of years but we still don't know much about the illness. We do know that it devastates lives on a daily basis, but we don't yet have answers to the most basic questions: what causes M.E? Who is at risk? How many people have M.E? We have no treatments developed for the illness.
In 2003 the Medical Research Council finally developed a plan to promote research into M.E. The Medical Research Council was set up in 1913 to promote research that will help improve the health and the quality of life for the people of the UK. Although it is funded by the government, it can make its own choice as to which research to support.
Despite this progress there remains no dedicated government funding for research into M.E., so we're asking the government to invest money into research. We know that M.E. costs the nation £3.5 billion per year in benefits, lost earnings and healthcare. Investing just 1% of this annual cost would be a kick-start to a research programme.
Many people are shocked to discover that M.E. can affect young people and yet we know that approximately 25,000 children and young people in the UK are affected by M.E. We work with young people and M.E. organisations, such as the Association of Young people with M.E. to ensure that the public, professionals and policy makers at all levels understand and act on the needs of young people.
The experiences of thousands of our members paint a bleak picture of the difficulties that people with M.E. face in claiming benefits. As M.E. symptoms can change from day to day, this poses a problem for a benefits system poorly designed to cope with this type of illness pattern and all too often people are faced with taking their case to appeal, both to gain their entitlements and avoid having them withdrawn.
We lobby the Department of Work and Pensions and support the work of the Westminster All Party Parliamentary Group to gain fair treatment for people with M.E.
