Bring Me Men to Match My Mountains
“Bring me men to match my mountains, Bring me men to match my plains, Men with empires in their purpose, And new eras in their brains” – Sam Walter Foss
A modern day equivalent for chronic fatigue syndrome might be “Give me data to match my disorder and researchers with new era’s of research in their brains”. I think we have researchers with visions of new era’s of research animating their actions. The Kogelnik’s, Vernon’s, Klimas’s and others see the possibility of new eras of research informing this disorder and they are yearning for it – they can probably taste it in their mouths – and all they need is the money to achieve it. They all believe gathering ‘big data’ holds great promise for this disorder and they’re not alone. Big Pharma insider and provocateur Bernard Munos again and again trumpeted the need for data – more and more data – in ME/CFS research in his talk at the FDA Stakeholders Meeting.
So we need data, we already have some, but not enough and not in right format and not good enough. We need more and better data. We need tools to go along with the data. We need partners, we need money and lastly, we need leadership and passion. Bernard Munos
A big messy disease like chronic fatigue syndrome is going to need data to clean it up; data to dig through the mounds of genetic, gene expression, lab and clinical data and then latch onto the core issues….. data to dig out and verify the subsets…data to interest Big Pharma (and “Big Research” ). “Build it and they will come” said Munos. With the grant the Open Medicine Institute just scored from the VMWare Foundation to expand its data gathering infrastructure, the OMI is beginning it build it. In his talk at the FDA Stakeholders Meeting Dr. Peterson laid out good reasons (several billion of them) why they will come. I think they will.
The Next Step
This grant of IT personnel and resources is about building capacity…and that means Open Medicine Institute probably has the infrastructure to capture as much information as we can give them. Some may balk at that but I welcome placing absolutely every scrap of information (properly de-identified) I have on my disorder in the databanks of an organization focused on beating this disease. The opening of the OMI’s program to collect that information – OpenMedNet – will soon allow people with ME/CFS to contribute to ME/CFS research by entering the data they have…..and by collecting data over time. That’s next up on the OMI’s agenda. The grant will also give the OMI the capacity to build the mega patient registry they’re committed to building. It provides the underpinning of much of what they want to do.
The OMI is off to an excellent start with two major grants to explore the genetics and help produce the information infrastructure needed to understand this disorder. At the Invest in ME meeting this month, Dr. Kogelnik and Linda Tannenbaum will unveil more about how we can contribute to the end of ME/CFS as we know it by providing data on a scale we haven’t seen before. It’s going to be interesting…:)
- Check out the OMI’s gene grant - Open Medicine Institute Scores Major Grant To Explore Genetic Underpinnings and Alternative Therapies for Chronic Fatigue Syndrome (ME/CFS)
Infrastructure Building Coming of Age in ME/CFS
Two groups, in particular, the Open Medicine Institute and the CFIDS Association of America (CAA) are focused on developing the information infrastructure needed to generate faster movement in understanding and treating ME/CFS. Infrastructure development is not particularly sexy; freeways, for instance, aren’t sexy but boy do they get you to your destination faster and that’s the plan here. IT infrastructure doesn’t create breakthroughs – it enables them. The CAA will come out with their set of data aggregation and collection tools soon and their project to build patient registries that make it easier and cheaper to conduct clinical trials won the Sanofi Challenge last year. Kudo’s to both organizations for taking a long term view of this disorder and its needs and building for the future.
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