This is why we need a specialism in ME – a clinical consultancy attached to the research. And this is why we need up to date information that is not serving the biopsychosocial ideology or some careers. These are all elements that Invest in ME Research have been developing for years, with few resources and with little support other than from the great supporters that we have. It is why we need to complete the establishment of the foundation for the Centre of Excellence that we have started - to join research and create the future rather than rely on the status quo that benefits some organisations and individuals – but not patients. An organisation can achieve a lot in five years – or it can achieve nothing. appreciate. We need momentum and international collaboration in research – and this is what Invest in ME Research provides with its cpd-accredited Colloquiums that are designed to bring together researchers, clinicians, patient groups and patients/carers in order to make progress in research into ME. This year’s Colloquium has almost one hundred biomedical researchers from around the world, from all of the main centres of research into ME and the CDC and NIH, binding these research elements together and creating new ones. The Colloquiums are created by a small charity with great supporters without support from large establishment organisations or paid employees doing the work. But then the Colloquiums are the real thing – not carrying any baggage from the wrong stuff or weighed down by affinities to the BPS lobby. Moreover, they are successful – often even helping those who choose not to support the charity. It is five years since we began funding the first biomedical research project at Norwich Research Park. An organisation can achieve a lot in five years – or it can achieve nothing. The difference is often down to individuals – those who have the passion and dedication to make change - or those who fail to do anything and are comfortable with seeing no change, merely making disingenuous platitudes aimed to assuage patient opinion. We have been reminded in recent times of how fragile life is and how healthcare is so important for a just society. Even “established” diseases that have comparatively large research funding and correct The NIH initiative is along the lines we foresaw when we initiated our proposal for a Centre of Excellence. The IiMER concept and development is based on a sound foundation and trusted biomedical researchers who are not serving their own agendas and has no baggage associated with it that can cause harm to people with ME. The key to making ME a disease that receives the highest priority is an objective that we need to attain by establishing basic building blocks and a foundation on which to progress – funding for proper, high-quality biomedical research; education about the disease; and correct perception of the disease. These aforementioned building blocks happen to be the basic objectives of the charity. We do believe that a corner has been turned and more good news is coming – some from IiMER. However, time will tell if we are heading for a new dawn – or watching the stars circle. perception amongst health departments are not without issues. We have seen examples of this close up. The negative early results from the Norwegian Phase III trial has created a vacuum in research into ME. It directly affected the charity’s plans for research and forced a major reassessment of our strategy and that of our supporters. We were recently grateful to learn that the pledge that was provided for the rituximab trial from the Hendrie Foundation has now been granted for use by the charity in other, future biomedical research. The Hendrie Foundation has been an incredible supporter showing not only advice and support but also huge integrity – a particular attribute that we Invest in ME research (Charity Nr. 1153730) www.investinme.org Page 11 of 56
12 Publizr Home