Journal of IiME Volume 9 Issue 1 the patient community seemingly happy whilst the authorities do nothing concrete to remedy the current situation ( a tactic used extensively by the establishment for the last ten years). ► It would be well for the NIH NOT to follow the UK example where an insincere effort to change is portrayed as real progress but just results in wasted years. ► The mediocrity in terms of provision of correct and up to date definitions and guidelines, scientific research and development of treatments and perception of ME was a direct result, and failure, of the policies of the past. ► We found the first part of this report described what needs to be done – but there were some incomprehensible references to using treatments which have contributed to the abysmal situation in which ME/CFS patients find themselves. ► We believe research into ME needs a strategic approach - but it is meaningless, and destined to fail completely, if it attempts to establish the way forward on foundations which include so much of what has been wrong in the past. ► For a way forward with proper research into ME then we need not just funding, but correctly defined cohorts, standardisation on diagnostic criteria and a collaborative of researchers who will not blur science with politics. ► The NIH have a unique possibility to be bold, to fix this problem once and for all. Invest in ME suggested the following actions for the NIH to take – The NIH finally and totally abandon all links to the psychosocial model with regard to ME research funding May 2015 Instead of relying on alternative funding streams elsewhere the NIH should take responsibility themselves for ME/CFS The NIH should invest $50 million per year for the next five years in biomedical research into ME/CFS, and provide correct and current education into the disease which will, in turn, raise appropriate awareness. This would mean an investment of $250 million over 5 years. This amount will still be less than the documented annual cost of ME/CFS of $1 billion as noted in line 6. This will – create scores of biomedical research projects, lots of potential international collaboration, new ideas and new skills to enter the ME/CFS research area facilitate the harnessing of the full potential of academic and research institutes attract new, young researchers into the field of ME/CFS – this the charity has proven already with our BCell/rituximab project with UCL where a young researcher is drawn into this exciting area of research galvanise science and eventually form pockets of expertise which will create the centres of excellence for the future. We suggested trying this for a 5 year period With a yearly review of progress can inform every one of the status. After 5 years of such funding a new conference/workshop/committee can be convened and progress can be examined. This will provide the best chance possible for resolving this illness to the benefit of patients. Our guess is that so much progress will have been made in research, in perception and possibly in treatments during that period that the money will be recouped with the Invest in ME (Charity Nr. 1114035) www.investinme.org Page 25 of 57
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