Journal of IiME Volume 7 Issue 1 (May 2013) Inside This Issue 3 Welcome to the Conference 7 9 14 18 21 22 24 Biomedical Research into ME Collaborative Meeting IiME Proposal for Examination and Research Facility Let’s Do It For ME Lili – Diane’s Story Guidelines Sarah’s Story - JustGiving Presenters at IiME Conference 32 OMI-MERIT Initiative 34 Conference Agenda Invest in ME (UK Charity Nr. 1114035) PO BOX 561 Eastleigh SO50 0GQ Hampshire, UK Tel: 07759 349743 E-mail: info@investinme.org Disclaimer The views expressed in this Journal by contributors and others do not necessarily represent those of Invest in ME. No medical recommendations are given or implied. Patients with any illness are recommended to consult their personal physician at all times. Invest in ME (Charity Nr. 1114035) Welcome to IIMEC8 This is our ninth Journal of IiME and is made available online for free on the charity’s web site. A hard copy also forms part of each delegate’s conference pack at the 8th Invest in ME International ME Conference 2013. Invest in ME have now organised eight biomedical research conferences for ME – myalgic encephalomyelitis - and the conference has become a good checkpoint to determine how things are progressing with research into ME. We have been reminded in recent times of how fragile life is and how healthcare is so important for a just society. Yet for ME services to magically attain the levels for existing diseases, whilst absolutely justified and to be expected, is realistically not something which will appear overnight. Even “established” diseases which have comparatively large research funding and correct perception amongst health departments are not without issues. We have seen examples of this close up. The key to making ME a disease which receives the highest priority is an objective which we need to attain by establishing basic building blocks and a foundation on which to progress – funding for proper, quality research; education about the disease; and correct perception of the disease. Invest in ME was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. These aforementioned building blocks happen to be the basic objectives of Invest in ME. The people who run and support the charity are all volunteers. There are no salaried staff and all work is performed in spare time, for free. The charity does not exist just to exist – we exist to make progress. For us biomedical research into ME has not been well served in UK or elsewhere for a generation. Patients are literally sick of the behavioural approach to ME and fatigued by the constant false belief that exercise will make one better. The PACE Trial provided evidence that CBT and GET do not produce any objective positive results. Yet although heavily criticised and eventually dismissed by ME patients, with hindsight, perhaps the PACE Trial actually did the cause of biomedical research into ME a huge favour. As knowledgeable patients have been able to point out the flaws in its design, execution and implementation, and debunked implausible attempts to spin the results into a justifiable end point, so the PACE Trial has clearly shown why the psychosocial view of ME is now www.investinme.org Page 3 of 36
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