2025 marks a milestone in the history of ME Research UK, as this year the charity marks 25 years since its foundation. As an organisation, our dearest wish is that sustained major funding into ME/CFS becomes available, leading to a cure or effective treatment. It is at that point that ME Research UK could withdraw.
ME Research UK does not celebrate 25 years of work, but rather marks the commitment of researchers and supporters and what they have achieved. This year, through themed initiatives, the charity will raise the profile of the disease and highlight research efforts.
The charity’s original founding document was signed on 20th January 2000, and The ME Research Group for Education and Support (MERGE) was born. Throughout 2000, the nascent charity was registered with the Charity Commission and with HM Inland Revenue. Over the years, the working name of ‘ME Research UK’ became the charity’s formal name and OSCR took over as regulator.
What has not changed in 25 years is the crucial need for a biomedical research-centred charity. The charity’s name, regulator and much else has altered, but the principal aim of the organisation remains:
To advance scientific knowledge by commissioning or funding research into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or any other related illnesses, and to publish or cause to be published the results of any such research.
It is fitting that the charity’s anniversary falls in 2025 as this year marks 75 years since the Royal
Free Hospital outbreak – a seminal event in the history of the disease and its study.
Our Story
The charity was established 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 and has sustained us for a quarter of a century.

Founding Trustees Robert McRae (l) and Dr Vance A Spence (r) in 2010 marking 10th anniversary of foundation of ME Research UK
The Future
Over 25 years, ME Research UK has invested over £4.5m in 68 research projects (and counting) world-wide, funded 4 PhD-level research projects, and launched a fellowship. In terms of projects, the charity is the largest funder of ME/CFS research outwith North America.


We pledge to continue to:
- Influence the biomedical research and funding agenda by working proactively and collaboratively with other organisations.
- Invest globally in high quality biomedical research into ME/CFS which we believe has the potential to further the understanding of the illness.
- Inform the science community, civic society and those affected by the illness by taking a leading role in interpreting, analysing and commenting on published biomedical research into ME/CFS.