Our Vision and Mission
ME Research UK’s vision is to end the suffering caused by ME/CFS by investing in high quality, scientific (biomedical) research into the causes, consequences and treatment(s) of the illness. Only through biomedical research will the disease be understood, accepted, and real change to the lived experience of those with the illness become a reality.
In particular, we:
- 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; and
- influence the biomedical research and funding agenda by working proactively and collaboratively with other organisations.
We exist solely to inform, influence and invest in biomedical research and, to date, we have invested almost £4.5 million in biomedical research worldwide on 67 distinct projects and funded 5 PhD-level research studies. In addition, we have, alongside the Daphne Jackson Trust, launched a Fellowship to encourage postdoctoral researchers to return to their work and study ME/CFS. There is more to do and we are determined to do more. In fact, ME Research UK has funded more specific biomedical research ME/CFS projects than any other charitable organisation in the world outside North America. However, it is vital that more high-quality research is carried out into both the cause(s) of the illness and its effects, with the ultimate aim to discover a treatment or a cure for this most disabling of illnesses. ME Research UK’s Constitution specifically charges the charity “To advance scientific knowledge by commissioning or funding research into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).”
ME Research UK is dedicated to ensuring that research into ME/CFS reflects the prevalence and seriousness of the illness and to funding the highest quality of biomedical research possible.
The Illness
Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. Both the World Health Organisation’s ‘International Classification of Disease’ (ICD10 (G93.3) under ‘Post-Viral Fatigue Syndrome’ and the Systematized Nomenclature of Medicine (SNOMED CT) list ME as a disorder of the nervous system.
NICE records that data from the UK ME/CFS Biobank suggests that over 250,000 people in England and Wales self-report ME/CFS, with about 2.4 times as many women affected as men. The prevalence rate, however, is inadequate and the numbers with ME/CFS throughout the UK is far higher than the reported figure – a matter ME Research UK commented on in August 2024 and provided a full critique of the current situation via articles published in October 2024. Worldwide, as the German Parliament was informed, the number affected is estimated at around 17 to 24 million people. In addition, it is estimated that around 1 to 2 percent of all SARS-CoV-2 infected people (up to 20 percent of all post-COVID sufferers) will meet ME/CFS diagnostic criteria after six months. It must therefore be assumed that the number of people affected by ME/CFS will almost double worldwide. In figures, this would correspond to 10 million new cases.
ME/CFS can affect people of all ages. It is a complex, multi-system, chronic medical condition that has considerable personal, social and economic consequences and a significant impact on a person’s quality of life, including their psychological, emotional and social wellbeing.
What is certain is that ME/CFS is not a simple post-illness fatigue. It lasts longer and even minimal mental or physical activity can make symptoms worse. NICE records neither a cure nor a treatment for ME/CFS.
There is presently no diagnostic test or single universally accepted diagnostic definition for ME/CFS. People with the condition report delays in diagnosis, and many healthcare professionals lack the confidence and knowledge to recognise, diagnose and manage it. Fatigue associated with other chronic diseases may be erroneously confused with ME/CFS and some practitioners are reluctant to positively diagnose ME/CFS. Many people with ME/CFS report a lack of belief and acknowledgement from health and social care professionals about their condition and related problems, which may lead them to be dissatisfied with care and to disengage from services.
ME Research UK’s charity year ended on 31st October and in this review of our year we, for ease, divide our activities around 3 key areas:
- Investing
- Informing
- Influencing
