Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
Vision was never the question with the Open Medicine Institute (OMI). They’ve always dreamed bigger than anyone else. They had vision in spades. The question was always follow through. Would they be able to make good on that big vision? The OMI has always had the vision. Now they’re starting to make good on it.
Slowly but surely, they’re starting to, and they’re doing so in the most interesting fashion. Nestled in the heart of Silicon Valley the OMI and its fundraising arm, the Open Medicine Foundation are taking full advantage of their technologically rich environment. When they needed new technology to carry out a project they built it. They’re digging deeper into the genome than anyone else has. They have access to some of the best tools in the land. They’re soon to begin the biggest cognitive survey ever done using their unique online database. Last year was a big year for the OMI. They’re getting their feet under them and starting to move.
Big Data Indeed
There’s no doubt that technology is going to provide the answer to ME/CFS. The deeper researchers can look into this disease the more quickly they’re going to be able to figure it out. Starting with the genes, the OMF wants to take the deepest look into ME/CFS ever.
“Familial links have long been speculated, however, no research study has ever placed a direct finger on genetics as having a role in ME/CFS – these initial pilot studies were aimed at putting that finger down on the map.” Dr. Kogelnik
Full Genome Arrays
The Edward P. Evans Foundation provided the funds, and the Stanford Genome Technology Center (SGTC) provided the technology to produce for the first time, the full genomes of ME/CFS patients. This project – which involved seven carefully chosen ME/CFS patients – is one step in their larger project to do in-depth and comprehensive analyses of virtually every important system of the bodies of severely ill patients. This massive fishing expedition – if it’s funded – could pluck out core areas of dysfunction that would otherwise take decades of plodding research to find.
If you don’t know where to look and with the pitiful research funding chronic fatigue syndrome has received we don’t know where to look – you simply look everywhere. You get the best tools, and you look everywhere. I’ll be covering more on this project soon.
For now they have the full genomes of seven ME/CFS patients. Dr. Kogelnik reported that the “tidal wave” data resulting from the project has identified families of genes that may constitute the weak links in ME/CFS patient’s genetic armor.
“I really enjoy working on problems that others think are unsolvable.” – Ron Davis
Ron Davis said that if he doesn’t have the right technology he’ll just build it. In the second phase of the gene project that’s just what he did. Faced with the inability to peer into a portion of the genome (the HLA regions) Davis thought might hold a key to ME/CFS, the SGTC built, with the help of two grants, it’s own telescope into it. Now only did they build it but they discovered a cheap way to do it. Now, some genomic regions hidden from view in everyone – not just ME/CFS patients but everyone– are opening up for the first time – in ME/CFS patients.
Adaptability is the theme of this portion of our immune system that’s been tasked with the feat of identifying rapidly evolving pathogens. These regions of our genome are so variable and complex that in-depth analyses of them are typically left off of “whole genome” analyses. Not any more.
The OMF, with the Edward P Evans Foundations help, has scanned the HLA regions of over 600 ME/CFS patients. Dr. Kogelnik reported the results thus far were “promising”. After scans of 10,000 healthy controls produce a good comparative sample, a paper will be published. Will genetic barriers to pathogen recognition pop out in ME/CFS? Will problems recognizing herpesviruses, in particular, show up?
Time will tell.
The methylation and other events that slowly but surely irrevocably alter our gene expression over time have become big news in research and ME/CFS researchers are jumping in with two feet. Patrick McGowan’s successful Solve ME/CFS Initiative epigenetic pilot study has turned into a major grant. The CDC and the Australian NCNED group have been exploring this area as well, and the OMF and the STGCC are doing so as well.
Last fall the OMF researchers began a pilot study examining methylation patterns in several hundred patients. The results were intriguing enough for them to begin a larger study – thanks again to the Edward P Evans Foundation – to replicate them.
Core Technology In Place
Gene expression is enticing because it measures what’s going on in the body at any one time; which genes are active, which one’s have been turned off. It’s ability to produce a snapshot of the body in action makes it a potentially invaluable tool for determining how the body responds to anything from exercise to different stressors to treatments. A generous funder just provided the OMI with a tool that can measure 70,000 gene expression points at one time.
They’ll be using their gene expression machine to assess one of bigger treatment questions in ME/CFS and FM: how big of a role do the MTHFR mutations play in these disorders? A multi-site treatment trial will begin soon.
Large Cognitive Survey On Tap
The OMI’s information platform, OpenMedNet is an online database for collecting clinical information on ME/CFS and other patients. Now being used to house information and samples from the CDC multi-site study, OpenMedNet is soon going to go public.
Five thousand ME/CFS patients have registered in OpenMedNet. It appears many of them are going to get emails in the near future. With the help of Brain Resources, Inc. the OMI will begin an ongoing survey of cognitive functioning of 3-4,000 ME/CFS using online tools.
“Our results over this year and the rising ground-swell around ME/CFS in the news and research literature leave us exceptionally optimistic for more progress in 2015 and beyond than we have seen in the field in a long time.” ~Dr. Kogelnik
The goal at the OMI has always been build the biggest network with the most data, and bring in the best researchers to crack ME/CFS. Coming from nothing just a few years ago theirs was an audacious vision. They’re not there yet – there are no breakthroughs to report – but the progress is real. You can see the foundations for their mega “End ME/CFS Project” being built.
There’s the incredible research talent (three Nobel Laureates and other internationally known researchers), the tools Ron Davis and the SGTC bring, the Foundation and corporate support they’re starting to get, and the patient infrastructure (OpenMedNet) being built to bring it all together. Plus, there’s Linda Tannenbaum who’s committed to doing whatever it takes – whether that means banging on a Senators door or walking the halls of corporate America – to make the project a success.
It takes time a lot of work to build something. You have to put in ten times the work in the beginning to get one result out. It’s hard to build momentum but it feels like that’s what’s happening with the OMI. With its cache of internationally respected researchers it could go far if given the chance. If one group in the ME/CFS universe is going to really “pop” it might be this one.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.