Journal of IiME Volume 9 Issue 1 recommendations were implemented and the psychiatric lobby who refused to sign the report went on take charge of the fatigue clinics and obtained all of the public research funding. ► At that time the participating psychiatrists should have been left out. But what has transpired is that they have still been allowed to control the debate in the UK. ► We would urge the US authorities to avoid a repeat of that. ► The report makes a major point - “Key to this effort will be the continued positioning of ME/CFS as a legitimate disease that occurs in both children and adults and should be properly diagnosed and treated.” May 2015 ► then this would also mean that the name SEID would have to be revisited and almost certainly changed. ► The toolkit for screening and diagnosis is an important part of the process. If this is not done properly then it is no good of having all of these recommendations. ► Again, there is a need for centres of excellence such as IiME have proposed [11] and experienced clinicians that can oversee this work. Research ●● ● ““Clearly a dramatic and immediate increase in funding for biomedical research needs to be made.,IiME ► What can be very helpful is if the information emphasises ME/CFS as a serious physical illness and that in itself leads to health care providers taking a correct attitude toward these patients despite there being no cure or effective treatment being available yet. Just informing patients to avoid overexertion in the early stages of the disease can make a huge difference in the outcome of the disease. - suggested $250 million dollars over the next five years” IiME Recommendation to IOM” ●● ● ► The report has underlined a core message from the earlier P2P report – namely how mediocre has been the research to date on such a serious disease; The IOM report is a major indictment of negligent MRC/NIH/CDC policies, highlighting the way that research and treatment and information about ME have been totally misrepresented ► It is good that the committee recommends continuing surveillance of the evidence and revisiting the criteria in no more than five years. But if ► “The committee recognizes that new and accumulating evidence will likely enable refinement of the diagnostic criteria proposed in this report and possibly define subtypes of the disease or even distinct entities” over the last generation by false funding policies, flawed research and vested interests. What a waste of life has been allowed to occur by governments from their failure to monitor progress or listen to continuing and mounting patient concerns; how corrupt and immoral has been the attitude of those leading the organisations which use public funding of ME research, given mainly to researchers who consider ME/CFS a psychosomatic illness? Our overriding feeling is that the IOM report highlights the complete lack of any strategy to research this disease properly by those entrusted with the responsibility to do just that. The aim now should be to find a speciality that owns ME/CFS or make ME/CFS a speciality in its own right – and this will not be psychiatry. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 31 of 57
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