This one-day workshop took place at the West Park Conference Centre at the University of Dundee on 3rd October 2003. Funded by a Royal Society of Edinburgh grant (under its RSE/Wellcome Trust Research Workshops Scheme) awarded to Dr Gwen Kennedy of the Vascular Diseases Research Unit, University of Dundee, the aim was to bring together a specially-invited audience of around 35 practising scientists to discuss biomedical developments and potential areas for future investigation.

After an introduction and welcome by Dr Gwen Kennedy, the workshop commenced with an overview of ME and ‘CFS’ by Dr Vance Spence, Honorary Senior Fellow at the University and Chairman of ME Research UK. The morning was given over to vascular aspects of the illness, and the two major speakers were Prof. Jill Belch, head of the Vascular Diseases Research Unit, University of Dundee, and Prof. Julian Stewart, Department of Paediatrics, New York Medical College, USA. The afternoon session dealt with cellular metabolism, and the main speakers were Prof. Kenny De Meirleir of the Department of Medicine, Vrje Universiteit Brussel, Brussels, and Prof. Grahame Hardie, School of Life Sciences, University of Dundee.

ME Research UK has funded and produced a comprehensive report of this one-day workshop. We hope it will be the first of many such reports of workshops on the biomedical basis of ME. A copy of the report can be downloaded from here.

Workshop report (pdf 491 KB)

Read the full text of Dr Vance Spence’s presentation “ME/CFS: A research and clinical conundrum”

Foreword to the report

Dr Neil C Abbot, Director of Operations, ME Research UK

It is my great pleasure to introduce this overview of the RSE/Wellcome Trust Research Workshop, written and produced by MERGE [now ME Research UK] to energise ME research. Every day in the UK, between 120,000 and 240,000 people waken with ME, a condition which principally involves debilitating malaise and pain. Studies tell us that around 50% are employed but struggling to maintain their lives, while another 40% exist on benefits, with considerable economic and social costs to the country. Despite the policy developments of recent years — including the report of the Chief Medical Officer of England, the short-life working group report to the Scottish Parliament, and the Medical Research Council’s ME/CFS research ‘strategy’ — people with ME remain ill and largely ignored by mainsteam academic medicine.

The diagnosis which they are given — CFS — is imperfect and lacks specificity, and “is a significant complicating factor in understanding the dynamics of this illness… there are probably different types of illnesses now contained within the CFS construct” (1). In the past, most research effort has gone into the validation of psychosocial strategies designed to manage the illness. Indeed, when MERGE [now ME Research UK] conducted an overview of 139 completed or ongoing research projects listed in the UK’s National Research Register (2), we found that most concerted interest (and, almost certainly, funding) was directed towards researching psychosocial aspects of the illness. It is widely recognised, however, that such psychosocial strategies have their practical difficulties and, importantly, that they are not curative, at least not in the sense in which ordinary people understand the term. Susan Sontag’s words have a particular poignancy in the case of ME: “Theories that diseases [illnesses] are caused by mental states… are always an index of how much is not understood about the physical terrain of a disease.

Something more has to be done: fundamental biomedical research on the subgroups of patients presently given the label ‘CFS’. Illnesses are most easily accepted when they have a specific clinical or scientific thumbprint — a biochemical test, a cluster of specific symptoms or signs, etc. — that confers legitimacy in the eyes of healthcare professionals. Until then, patients are in a no-man’s land between the living and the well, subject to a variety of quasi-therapeutic interventions. The discovery of a clinical or scientific thumbprint for ME, indicative of the physical terrain, would be the single transforming event in the lives of many thousands of people. MERGE [now ME Research UK] hopes this research workshop, which has brought together practical scientists from a range of disciplines, will be one more step towards this goal.

References

  1. Abbot NC, Spence VA. Can the National Research Register inform future policy? (ME Research UK Analysis 01-M002) (pdf 275 KB). Download it here (pdf 275 KB)
  2. Jason LA et al. Politics, Science, and the Emergence of a New Disease: The Case of Chronic Fatigue Syndrome. American Psychologist 1997; 52: 973–83.