The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS). This is a debilitating illness which affects between 120,000 and 240,000 people in the UK, but is neither well understood nor, in many cases, properly recognised.
We also have a mission to Energise ME Research, which involves raising awareness of the need for biomedical research into ME/CFS globally, and providing high quality information on all aspects of the illness for a wide range of audiences – from summarising and appraising scientific literature on ME/CFS to informing the policy agenda.
The charity was established in 2000 by Dr Vance Spence and Robert McRae, and thanks to the impetus and financial backing of Founding Patron, Roger Jefcoate DL CBE.
Vance and Bob were diagnosed with ME/CFS in the 1980s and 1990s, respectively, and both shared a vision and desire to ensure that more research into the illness, which so affected their lives, could be carried out and the results better understood. From the outset, each brought their own professionalism to the fledgling charity and their legacy imbues our work today.
Vance, being a leading research scientist at the University of Dundee, ensured that rigorous science was at the core of the charity. Bob, a senior banker with Clydesdale Bank, created the structures which allow ME Research UK to operate with utmost probity and financial security.
Both Vance and Bob knew that only solid research would change the prevailing attitude of scientists and the medical community to the illness. This research had to be sound, and researchers and supporters had to trust the charity financially.
Scientific rigour and financial probity are the twin strands which thread through our organisation and could be considered the DNA which made us the charity we are today.
These strands explain how we act as a charity:
- We only fund projects which are based on sound science and where proposals have been peer-reviewed and recommended for funding by our Science Advisory Committee.
- We only fund projects when we have ‘money in the bank’ to pay for the research to which we’ve committed.
- We concentrate on providing free, impartial, objective and trustworthy comment on research worldwide to inform all.
Our origins help explain why we act as we do and it’s been a formula which has served us well over the years. It’s a story that we are happy to tell to all those who put their faith in us – be they researchers, fundraisers, supporters or those affected by the illness. It’s how we have funded all our work thus far and how, with your support, we intend growing into the future.
As a Scottish Charitable Incorporated Organisation since 2011, we have no members, and so our structure is similar to many charitable trusts which focus on scientific research into specific diseases. ME Research UK has a Board of Trustees which is accountable for policy and, along with its scientific advisers, also responsible for the research projects that we commission and fund. Medical research by its very nature is very expensive, and in this respect ME/CFS suffers from chronic under-funding, a situation ME Research UK is determined to reverse.
Recognising that much of the existing research into ME has concentrated on psychological interventions designed to ‘manage’ the illness, ME Research UK believes that a programme of biomedical research is what is needed, and is what most patients and carers want to see. To achieve this, researchers with fresh, novel ideas have to be recruited and encouraged to undertake research in this field. This is the most difficult task of all, not least since government funding via the established research agencies is hard to access for groups wishing to research ME/CFS. It is at this leading edge that ME Research UK sees its role: to give help to biomedical scientists for novel research projects that would otherwise not be funded, and to support research groups to the stage where they can apply, on the basis of their previously published work, to major funding agencies for support.
Considerable progress has been made over the past few years in establishing the charity and in pursuing our aims. Indeed, since its foundation, ME Research UK has funded more specific research projects (47 to date) on ME/CFS than any other single organisation in the world outside North America, investing more than £1.5 million. With our small, committed team of core staff, an advisory panel of professional scientists, and a core group of trusted volunteers who help us run the charity, we are committed to establishing ME Research UK as a major force for change that will make a real, long-term difference to the lives and prospects of people with the disease.
Annual Report and Accounts
ME Research UK is regulated by the Office of the Scottish Charity Regulator (OSCR) on whose website figures for our past income and expenditure can be found.
Our Annual Report and Accounts provide a summary of our work over the past year, including detailed financial information, new projects funded, and how we use the funds entrusted to us. Click the links below to see the most recent reports, or contact us if you would like to see any previous reports.