Founding Trustees Robert McRae (l) and Dr Vance A Spence (r) in 2010 marking 10th anniversary of foundation of ME Research UK

Dr Vance Spence, a founding Trustee and Chairman of ME Research UK for the past 18 years, announced his retirement at the charity’s recent AGM. Although stepping back from his role as Chairman and Trustee, Vance will continue to be a member of ME Research UK’s Scientific Board, providing input and advice on the quality of scientific projects. As Vance said, “I turned 70 recently, and thought it time to hand over to younger heads to take the charity forward. I’ll be able to spend time with my grandchildren, and my hobbies, such as photography.”

All of us – from fellow Trustees, colleagues at the University of Dundee, and ME patients – have been fortunate to have been able to count on such a warm, skilled and dedicated friend over the past 30 years.

A graduate of the Universities of London and Dundee, Vance was originally a Principal Clinical Scientist responsible for vascular services and research. After a bout of glandular fever in 1980, he began to develop the symptoms of ME and was forced to take early retirement from his NHS post at the age of 41 due to chronic ill health. Despite his illness, he dedicated his limited energy to helping fellow ME/CFS patients locally; for example, he became Chairman of the Fife ME Support Group and was instrumental in forming the Fife Steering Group for ME in 1992. The aim of this grouping was to obtain funding for clinical services for patients in Fife, and its work finally bore fruit with the formation of the NHS-funded CFS Clinical Service which now exists in that area. Throughout these years, Vance gave freely, voluntarily and unstintingly of his time for face-to-face, telephone and email support to many hundreds of patients diagnosed with ME/CFS, support which included writing letters on patients’ behalf to official bodies or to trusts to elicit financial support in specific cases.

In 1997, he rejoined the University of Dundee Medical School as Honorary Senior Research Fellow in the Department of Medicine, with the objective of stimulating research into the causes of ME/CFS, which was very much a forgotten illness in research terms. He soon realised, however, that there was a need for a medical research charity dedicated to raising sufficient funds to get projects off the ground. So, with the help of Roger Jefcoate CBE DL and Robert McRae, a senior banker who also had ME, in 2000 he founded and launched the charity we now know as ME Research UK. Vance not only had the vision of creating a biomedical research-driven ME charity but he also the skills and dedication to make it a reality. Through his leadership as Chairman, he has steered the charity to become the largest (in terms of projects) funder of biomedical research in to ME/CFS outside of North America. To date, without governmental or Lottery funding, £1.6 million has been invested in research projects, mainly in the UK but also in Canada, Germany, Australia, Belgium, Sweden and, most recently, the USA. Through his direction, the charity has become highly respected by academic colleagues and a trusted partner in the eyes of scientific researchers in many countries, and has hosted two research colloquia and 2 international conferences on ME/CFS biomedical research. At the same time, Vance himself has been a much respected advocate for the recognition of ME/CFS, authoring many articles, essays and annotations on various aspects of the illness. He was instrumental in the formation of the Scottish Parliament Cross Party Group on ME and a member of the parliamentary Short-Life Action Group on ME/CFS, and despite his illness he remains in demand to speak to local ME/CFS Support Groups and to join panels of experts at various gatherings, conferences and events; in February 2018, for example, he was again a guest on BBC Radio Scotland.

In times past, streetlamps were lit each night by a lamplighter who wound his way through every town at dusk. The metaphor of the lamplighter went deep in popular culture; people knew where the lamplighter had been by the light he cast as he walked on, by the little seeds of light he planted as guides for others. Vance has been a lamplighter. His inspiration and vision have been at the core of the success of ME Research UK since its inception, and his friendship has touched the lives of many thousands, from young scientists wishing to start research into ME/CFS to individual ME patients and their families. We thank Vance for his leadership over the past 20 years, and wish him a long and happy retirement.

We are fortunate in that Vance has agreed to remain on our Scientific Committee and joins fellow Founding Trustee, Bob McRae, as Honorary President of ME Research UK.