About ME Research UK
The Gateway, Perth
ME Research UK is a charity with the principal aim of commissioning and funding 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 which is not 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
- providing high quality information on all aspects the of illness for a wide range of audiences — from summarising and appraising scientific literature on ME/CFS to informing the policy agenda
- hosting conferences on ME/CFS biomedical research, such as our “New Horizons 2008: International Conference on ME/CFS Biomedical Research” which took place in 2008 at the Wellcome Trust Conference Centre, Cambridge
As a Scottish Charitable Incorporated Organisation, we have no members — though people supporting our aims can become Friends of ME Research UK — and have a set-up similar to other charitable trusts whose main focus is scientific research into specific medical conditions. ME Research UK has a board of trustees which is accountable for policy and, along with its scientific advisers, is also responsible for the research projects that we undertake to commission and fund. Medical research by its very nature is very expensive, and in this respect ME 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.
ME Research UK (originally called the ME Research Group for Education and Support, MERGE) was founded by Dr Vance Spence and Mr Robert McRae in 2000. With Roger Jefcoate CBE as founding patron and The Countess of Mar as patrons, our official opening was in May 2001. In 2011 we became a Scottish Charitable Incorporated Organisation – one of the first charities in Scotland to do so – to further advance our aims and objectives. We are based at ‘The Gateway’, a purpose-built centre in Perth, Scotland, which is home to a range of voluntary organisations under the auspices of Perth and Kinross Association of Voluntary Services (PKAVS).
In its early years, ME Research UK was instrumental in forming a Cross Party Group on ME at the Scottish Parliament, to provide a forum for the concerns of patients and carers. In addition, it produced a range of high-quality documents, including an extensive response to the Chief Medical Officer’s Working Group report on CFS/ME; an overview of ME/CFS research funding sources in the UK; a document on Care Pathways which was submitted to the Scottish Executive of the Scottish Parliament; and our report on the 6th International Conference of the AACFS in Washington 2003. You can find these (and more) in the Information section of this website.
Friends of ME Research UK
On the research front, we brought together a team of scientists to form a Scientific Advisory Panel to review the merit of applications to ME Research UK for research funding, and commissioned and funded a number of research projects, the results of which have now been published in professional scientific journals, and are summarised in the Research section of this website. We also set about building our base of individual supporters, created our Group and Corporate Friends sections, and established links with other ME charities and groups — particularly the 25% ME Group with which we have close links. To cap it all, we have helped to produce the book ‘Shattered — Life with ME’ by Lynn Michell (Thorsons publishers).
Considerable progress has been made over the past few years in establishing the charity and in pursuing our aims. As well as moving ahead on publicity and fundraising, ME Research UK produces a bi-annual 16-page glossy magazine, Breakthrough which explores more fully the research we fund and has a print run of 4,000. At 2009, the charity funds the work of a growing number of scientists in the UK and worldwide, whose research covers several different areas of interest. To date, ME Research UK has invested over half a million pounds to support biomedical research, and the details of these and other projects, including the resulting scientific papers, can be found on the research pages of this website.
We have bold plans for the future, based on 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. From this strong start, 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 illness.