Journal of IiME Volume 4 Issue 1 www.investinme.org astonishing from any healthcare provider – let alone the nation’s guardian of health. Education is the key to progress and Invest in ME provide the 5th international ME/CFS Conference to show what can be achieved by dedication, proper science and clear strategy. A year ago, in our 2009 conference Journal of IiME (Volume 3 Issue 1), we posed a hypothetical situation which might occur between our 2009 conference and leading up to our 2010 conference. We supposed that a diagnostic test was developed and that sub groups were more easily able to be identified in order to guide treatments, and that a disease mechanism for ME was found? We asked – • how would ministers and healthcare officials react to such changes? • what changes would be seen in the healthcare system? • how would the pharmaceutical industry react with the promise of great rewards from development of effective treatments and possibly cures for ME based on successful biomedical research? • How would NICE react? To some extent our hypothetical situation has come about. The XMRV research was published – but what has been the reaction? An establishment mired in vested interests has been quick to malign the WPI/NCI/CC studies issuing results from rushed trials which have failed to replicate the painstaking research carried out in the USA. NICE have been quiet. Their much maligned guidelines for ME which allows a model of ME to be retained as a behavioural or mental disorder, recommending common-sense (pacing), noncurative and ineffective (cognitive behavioural therapy) and injurious (graded exercise) therapies. With the head of NICE even having failed to read a 400+ page analysis and criticism of the hugely expensive MRC-funded PACE trials by Professor Malcolm Hooper and Margaret Williams before rejecting it, the credibility of NICE is surely at its nadir. Perhaps predictably the Department of Health (DoH) has not acted. A department and a Chief Medical Officer which found it easy to Invest in ME (Charity Nr. 1114035) recommend large purchases of antivirals for pandemic of H1N1 which failed to materialize and which closed schools when a single pupil was found to have contracted this influenza variant, has been inconsistent and tardy in its reaction to the pending threat posed by XMRV and thousands of patients with an infectious disease being let loose on the blood banks of UK. The MRC have done nothing except to continue their failed policies of accommodating vested interests promoting psychosocial therapies to treat a disease for which every IiME conference has provided clear proof of the organic origin. As the Journal goes to press we are still awaiting decisions from the National Blood Supply agency on what is to happen. Meanwhile a potentially grave situation is allowed to continue with no action – with the risk to hundreds of thousands of people. Yet in the absence of progress from the government, Medical Research Council and from within the NHS it is the patients who are now being empowered. Invest in ME has recently used its Biomedical Research Fund (BRF), announced in January 2009, to part fund WPI research in UK studies of XMRV. The WPI have extended the original scale of the UK study agreed with IiME, thanks to the determination of their staff who have devoted their free time and the compassion of their president and research director. The response from UK patients has been overwhelming, with patients who have had no access to medical care and no involvement in research suddenly allowed to bypass the status quo enforced on their situation by a failed system and direct their own involvement in medical trials. This empowerment of the patient is an interesting corollary to the biomedical research taking place - demonstrating the fact that the UK healthcare provision as well as the policies of the MRC have failed the ME community. Perhaps this is the model for the future. IiME wishes to play its part in facilitating advances in biomedical research into ME and will be continuing to attempt to fund this research. To echo the oft-quoted MRC/CMO spin IiME are Page 5/56

6 Publizr Home

You need flash player to view this online publication