Journal of IiME Volume 5 Issue 1 (May 2011) for the biomedical research which is occurring and which will continue to undermine the apathy and indifference of officials who are paid to ensure adequate healthcare is available to patients. As patients and carers and advocates we have to do ourselves what others should be doing. 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 on in order to raise funding for biomedical research - education, publicising and lobbying. 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 – which 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 disease. 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 Consensus Criteria for diagnosis, so that there is an agreed basis (noting that evolutionary improvement would be welcomed). We believe governments need to not only endorse and adopt the World Health Organisation classification of ME as a neurological illness, as defined by ICD-10-G93.3. They also need to officially promote it underlining that it is completely separate from the psychological illnesses classified under ICD10-F48. This will provide the unequivocal distinction for this neurological disease and Invest in ME (Charity Nr. 1114035) avoid the sham science which has been allowed to be perpetuated by psychiatrists who wish to maintain their cash-cow of research funding. We believe that governments should provide a national strategy of biomedical research into ME to produce treatments and cures for this illness. But failing this we must take action ourselves. Since the last Invest in ME conference we have been working to initiate an examination and research institute in Norfolk, UK, which would properly diagnose and then research people with ME. The proposal is described later in the Journal. Thanks to the efforts of the IiME steering group members and to Dr Ian Gibson, who has been working tirelessly to support this proposal, we have come within one decision of initiating this and creating a unique UK scenario which would have the potential to lead the world. But the first step toward creating an improved future is developing the ability to envision it. And so we have to continue to debate, discuss and promote this work to enable others to see the possibilities. We welcome your support. The people working for and with Invest in ME are advocates of better education regarding ME. In a sense the speakers who present at the conferences are also advocates – often lonely voices who have fought against a biased and corrupted establishment that has treated this disease so poorly. It is no accident that the presenters at the IiME conferences are people who have consciences and who work for the benefit of patients. Annette Whittemore, the president and founder of the Whittemore-Peterson Institute is making our key-note speech Translating ME/CFS Research into Treatments to tell us about the future plans of the WPI. Mrs. Whittemore has Continued page 6 www.investinme.org Page 5/58
6 Publizr Home