Journal of IiMER Volume 10 Issue 1 serendipitous observations have been made in the 4- 5 years since the unfortunate focus on the retrovirus XMRV10, a false lead that appeared at the time to be so promising. The Norwegian trials of rituximab as an antibody therapy for lymphoma that serendipitously gave ME/CF patients a period of remission is an exciting observation that can direct our focus to better understand the disease11. Recent important ME/CFS studies on plasma cytokines12, and on miRNAs in plasma13 and Natural Killer cells14, as well as a miRNA study for a biomarker signature in the related disease, fibromyalgia15, have added valuable information. Given the environment described above in New Zealand, we have initiated a research programme on ME/CFS that is patient focussed, and is leaning towards the principles of precision medicine for understanding each patient, by using comprehensive molecular studies in the hope that this paradigm might reveal new information on the illness that is of national and global significance. An illustration how a detailed molecular focus on individual patients - precision medicine - can provide valuable information for such an unexplained disease as ME/CFS was starkly illustrated by the personal intense molecular study published in Cell in 201216 with over 40 authors by a Stanford University medical geneticist Michael Snyder. He followed his own molecular profile over ~ 2 years and related it to relatively minor illnesses such a common cold and an upper respiratory infection. The title of the paper was ‘Personal omics profiling reveals dynamic molecular and medical and phenotypes’. Apart from June 2016 determining the sequence of his genome, Snyder carried out complex analyses like exome sequencing, transcriptome sequencing, small RNA sequencing, shotgun proteome sequencing and metabolome analysis repeatedly through the 2 year period on samples of plasma and blood cells, and these were linked with clinical tests. Informative changes in gene expression profiles were revealed in response to the viral illnesses and they could be related to specific molecular pathways that were affected. Such a profound longitudinal study and analysis is beyond what can be done even with a small group of ME/CFS patients because of cost alone. Nevertheless, a distilled down study is possible that could still provide valuable information. Changes in the expression of genes, proteins and plasma metabolites in a chronic disease like ME/CFS that has acute, steady state, and relapsing phases might be highly informative to reveal a deeper layer of understanding. The costs of genome sequencing have plummeted to ~$2000 - $5000 per genome depending on whether detailed analysis of the results is included, and while providing valuable information it seems as yet not to provide compelling data that would immediately improve the situation for individual ME/CFS patients. In line with these concepts, we are now in the data collection stage for two small pilot studies, each with 10 patients, recruited in two separate regions of New Zealand. They are matched by age/gender with healthy controls, with one of the studies having Invest in ME (Charity Nr. 1114035) www.investinme.org Page 49 of 77
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