Our vision and mission
The CureME research team is based at the London School of Hygiene & Tropical Medicine’s International Centre for Evidence in Disability within the Department of Clinical Research, and also includes a lab team working within the Department of Immunology and Infection.
CureME is at the forefront of participatory epidemiological, clinical and laboratory research into ME/CFS in the UK. Our research has focused on improving recognition, diagnosis and treatment of ME/CFS, leading to the opening of the UK’s first ME/CFS Biobank (UKMEB) – now open to external researchers across the globe.
The vision of the UKMEB is to drive clinical & biomedical research to improve the recognition, diagnosis and treatment of ME/CFS.
The UKMEB’s mission is to sustain an open biobank resource which enables translational research and high quality, ethical investigations for the clinical and biomedical understanding of the illness and in so doing, fosters cooperation and collaboration between researchers and enhances the opportunity for breakthrough discoveries.
Our research philosophy
- in transparent, multidisciplinary research informed by and for the benefit of people with ME/CFS;
- that clinical and biomedical research with a focus on identifying and confirming biomarkers should be a high priority;
- that applying robust scientific methods to identify and characterise sub-groups of people with ME/CFS will lead to a better understanding of its causes, the discovery of appropriate diagnostic tools, and the development of specific treatments;
- that research should translate into real changes in people’s lives and in the provision of high quality and effective health, occupational, educational, and social services responsive to the needs of people with ME/CFS, their families, and their carers.
Our understanding of ME/CFS
- that it is a severe, debilitating disease presenting with multi-systemic symptoms, usually including but not restricted to severe fatigue;
- that “chronic fatigue syndrome” is used in some contexts to represent a wide range of conditions resulting in chronic fatigue, including but not limited to ME/CFS;
- that it is vitally important to collect data on case definition compliance as part of research so that it is clear to which patient populations results are relevant. We base our recruitment on the Canadian Consensus and U.S. CDC 1994 criteria;
- that appropriately sub-grouping patients will improve the chances of people receiving effective care and services according to their individual needs (personalised medicine) and the requirements of distinct sub-groups (stratified medicine).
Inclusion of patients in research
- that continued poor recognition of and misunderstandings about ME/CFS results in unnecessary additional suffering in people directly affected by the illness and in those close to them;
- that people with ME/CFS should be respected, listened to, and never stigmatised;
- that building partnerships between researchers and people with ME/CFS (participatory research) will help lead the way forward.
Modus Operandi for the CureME Steering Group