Thursday, January 27, 2011
Invest in ME
It is worth reading the mission statement for Invest in ME.
(Invest in ME was started by Pia and Richard Simpson, parents of two daughters stricken with ME. They learned everything the hard way, through experience. With the combination of hard work and a number of good friends, they run the very best conference in the world on research in ME/CFS. Given their limited means it is unfathomable how they actually do this. Importantly, Invest in ME is also heavily involved in the independent testing for XMRV in the UK. )
"Invest in ME was set up with the objectives of making a change in how ME is perceived and treated in the press, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts in order to raise funding for biomedical research - education, publicising and lobbying. Invest in ME aims to provide the coordination of events and activities in these areas. This will provide the focus and funding to allow biomedical research to be carried out.
Our aim is to bring together like-minded individuals and groups to campaign for research and funding 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 that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness.
We believe that the seriousness of the situation regarding ME makes it necessary for governments to provide "ring-fenced" funding for bio-medical research into ME (as was provided for HIV/AIDS) in order to address the need for development of diagnostic tests and remedial treatments.
We believe governments should standardise on usage of the Canadian Criteria for diagnosis, so that there is an agreed basis (noting that evolutionary improvement would be welcomed).
We believe government need to not only endorse and adopt, but officially promote the World Health Organisation classification of ME as a neurological illness, as defined by ICD-10-G93.3, separate from the psychological illnesses classified under ICD-10-F48, in order to provide the distinction of the neurological disease.
We believe that governments should provide a national strategy of biomedical research into ME to produce treatments and cures for this illness."