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, and our in-house team aims to:
- Identify potentially important biomedical projects
- Publish scientific papers on biomedical aspects of the illness
- Produce high-quality professional reviews and reports
- Present research at meetings and conferences
- Facilitate research applications by established researchers to grant-awarding bodies
As a charitable trust, we have no members — though people supporting our aims can join the 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.
Perth, Scotland
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 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 and Dr J Gordon Parish as patrons, our official opening was in May 2001. 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 first 3 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, we 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, and a document on Care Pathways which was submitted to the Scottish Executive of the Scottish Parliament. You can find these (and more) in the Publications section of this website. 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 up our Friends of ME Research UK scheme, created our website and established links with other ME charities and groups — particularly the 25% ME Group with which we have close links.
In the year 2003/2004, we began a series of funding initiatives designed to channel money into scientific research on ME/CFS. Alongside this, we produced our report on the 6th International Conference of the AACFS in Washington 2003, created a Database of Research Publications which contains more than 3,000 research abstracts, and wrote a 16-page report, ‘New developments in the biology of ME/CFS’, based on the Royal Society of Edinburgh Workshop in 2004. All of these are available in the Information section of this website. To cap it all, we have helped to produce the book ‘Shattered — Life with ME’ by Lynn Michell (Thorsons, 2003).
Considerable progress has been made over the past few years in establishing the charity and in pursuing our aims. We have bold plans for the future, based on our strong in-house team, an advisory panel of professional scientists, and a core group of trusted volunteers who form the Friends of ME Research UK (read more about this scheme). We are now engaged in consolidating our funding to ensure that the important work can continue, and in producing a continually-updated wish-list of projects we would like to fund.
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.
