Looking for Solutions
Like matchsticks people with ME have often been discarded, no longer worthy of attention.
ME has been a frequently misunderstood disease.
- Underfunded and ignored
- Poorly researched and lacking any coherent research strategy
- A cause of hardship and distress for patients and families and difficulties for healthcare staff
- Misrepresented by ill-informed media
- Incorrectly described in medical text books
- Lacking factual information for GPs
- Subject to flawed or deleterious treatments
There is a better way.
Invest in ME (Research) attempts to change this by raising the standards - via up-to-date educational material and annual international conferences/colloquiums and a research strategy backed up by international researchers.
Our aim – to resolve this
Invest in ME Research is an independent UK charity finding, facilitating, and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME), and promoting better education about ME.
The charity's objectives are to initiate, maintain and augment a strategy of high-quality biomedical research into ME, to provide education about ME, and to raise awareness of the effects of the disease on patients and families.
The charity believes that biomedical research into ME is crucial in order to make progress in treating this disease. We also believe that education of healthcare staff, the media, government departments, patient groups and patients is to be a priority.
Invest in ME Research is run by volunteers - patients or parents of children with ME - with no paid staff.
Overheads are kept to a minimum to enable all funds raised to go to promoting education of, and facilitating and funding biomedical research into, ME.
We are a small charity but with supporters who have big hearts - and a determination to get the best possible research to be carried out to find the cause of myalgic encephalomyelitis and develop treatments.
We have links nationwide and also internationally.
Invest in ME Research is a founder member of the European ME Alliance (EMEA), a collaboration of European national charities and organisations.
The charity was also responsible for initiating the European ME Research Group (EMERG) concept, a collaboration of European researchers from major institutes.
The charity also has initiated the European ME Clinicians Council (EMECC), a network of European clinicians who will work together and share experiences of treating ME in order to establish better standards for patient care.
We do not receive, and have never received funding from government or government organisations.
The seriousness and urgency of the situation regarding ME makes it necessary for a charity such as Invest in ME Research to provide the impetus for funding biomedical research in order to provide hope for the development of diagnostic tests and remedial treatments.
The charity has pursued of policy of raising funds itself for biomedical research in order to fund research at top UK institutes. More information is available here.
We believe that clinicians should standardise on usage of the most up-to-date criteria which will be agreed and developed for diagnosis by the European ME Clinicians Council and European ME Research Group, along with international collaborators. in order that there is an agreed basis (noting that evolutionary improvement would be welcomed).
The charity organises an annual research Colloquium and conference regularly attracting delegates from 20 countries and funds research at the Quadram Institute and the University of East Anglia as well as influencing collaboration elsewhere, in UK, Europe and beyond.
Our conferences and colloquiums were organised from the beginning in order to provide a platform for research and a means of facilitating education about ME.
In order to bring the best education and research to bear on ME and to find and facilitate the best strategy of research into this disease the charity welcomes support for our work.
Our aim is to fund and facilitate research in order to establish an understanding of the aetiology, pathogenesis and epidemiology of ME. We hope this will lead to the development of a universal diagnostic test(s) that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness
Our efforts are focused on setting up a UK/European Centre of Excellence for ME which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).