Journal of IiME Volume 7 Issue 1 effectiveness and efficacy of this model and it could be developed from there. This service model would be based on a biomedical approach to ME with a trained and knowledgeable consultant(s) and where training was emphasised. GPs could also learn from this and all would be aware of the biomedical research into ME which had been and was taking place. Common protocols could become established to enable a consistent approach to treating patients. The proposal for an examination and research facility in Norwich by IiME includes patients being correctly diagnosed and put forward for biomedical research, with results from the research being applied to patients as soon as possible. We needed an acceptance from the NHS that there was no one size fits all treatment/management option. Education of GPs was important as lack of knowledge permeates the NHS. So IiME proposed holding workshops with qualified physicians and the charity offered to arrange these as part of the introduction and trial of an appropriate service model, with the charity using its links to various researchers and clinicians here and abroad. Such workshops could educate healthcare staff and look at patients. We suggested these projects could serve as pilot projects for the NHS commissioning groups. Dr McShane identified three strands coming from our discussions. 1. Empathy and Respect (anger felt by patients and carers understandable) 2.Services (some in the country supportive) 3. Research The parents of the severely ill child added a 4th important strand - Medical practitioners are faced with a lot of conditions - instead of suspicion they should accept their limitations and show respect. Patient /carer experiences/expertise should be acknowledged. The outcomes from this meeting confirmed our views that we need to educate GPs; that research is correct way forward as IiME were proposing; and that we must continue to have to force through the necessary changes ourselves. So an independent charity and its supporters continue to crowd fund biomedical research, continue to crowd source ideas for ME research and continue to raise awareness of this disease – backed by an increasing number of supporters who, themselves, have ideas and are willing to make the enormous effort to make a difference. Prior to the conference the charity has organised an international collaborative meeting with researchers and clinicians from nine countries in attendance. Last year the collaborative two-day Clinical Autoimmunity Working Group (CAWG) meeting organised by Invest in ME and the Alison Hunter Memorial Foundation of Australia, in London, brought old and new researchers to the same table for two days of discussions. Initiatives came from this meeting and, perhaps, influenced the latest calls for research in the latest MRC highlight notice from last year - “There is now preliminary evidence supporting the view that inflammatory mechanisms in the brain and spinal cord may underlie the pathophysiology of some severe disease CFS/ME phenotypes.” Immune dysregulation: “There is evidence for a disturbance in innate and adaptive immunity in CFS/ME including alterations in cytokine profile, absolute and functional alterations in T cells and NK cells and occurrence of autoantibodies and allergic reactions that may explain some of the manifestations such as fatigue and flu-like symptoms. A number of infectious and (May 2013) Modern day terms for raising awareness and funding – crowd sourcing and crowd funding – are now used to describe efforts to maximise the potential of new technology for the benefit of patients. An increasingly more knowledgeable and determined patient population are forcing change and making things happen - making a difference - thanks to conferences and organisations highlighting ME research and to the immediacy and effects of social media. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 5 of 36
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