Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Andreas Kogelnik, MD, PhD Comments on Progressive Research Year of 2014

Andreas Kogelnik, MD, PhD, President and Founder of the Open Medicine Institute (OMI) and a member of the OMF ME / CFS Scientific Advisory Board, comments on a busy and progressive year of research funded by OMF-Open Medicine Foundation.

 

“It has been a busy and progress-filled year at OMI and OMF. With the very generous support from the community, several foundations and private sources, we have embarked on the first major large scale efforts to quantify and qualify molecular and other objective information around various aspects of ME / CFS – with a focus on practical translation of these results to patient health. Our efforts covered a wide swath of previously uncovered or poorly covered measurements in ME / CFS, from DNA sequencing, HLA analysis and other molecular technologies to informatics, functional cognitive measurement and treatment protocols.

The first of the major projects initiated, with the support of the OMF via the Edward P. Evans Foundation, were looking at the genetics of ME / CFS. 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. The first study, completed in fall 2014 as collaboration between OMI and the Stanford Genome Technology Center (SGTC), has resulted in the first full complete genomes of 7 ME / CFS patients being completed. This effort has given us a tidal wave of data that, like most whole genome data, will be analyzed for some time to come. The initial result, while (as expected) not yielding any single genes responsible for ME / CFS, has identified numerous candidate families for increased susceptibility to ME / CFS (read on below). We will continue to dig through this pile of data and plan to grow the number of sequenced individuals as resources allow.

The second project, another OMI/SGTC collaboration and supported by OMF via Edward P. Evans Foundation, pitted a new technology for in-depth immune gene sequencing of the HLA region of the genome. This new methodology (developed at the SGTC) provides greater DNA sequence detail than ever before around these hyper-variable regions of the genome that are typically not included in “whole genome” sequencing due to their variability. Approximately 800 ME / CFS patients were the first of any disease to be studied using this technology. The initial results of this pilot are promising and we are awaiting 10,000 control patients to be completed to provide a strong comparative reference for this analysis. The project data is being prepped for publication.

The third DNA based project revolved around epi-genetics or the external factors influencing our genes to turn-on or off. Another OMF/EPE supported effort, in the late fall we completed a pilot project looking at methylation patterns of DNA in ME / CFS of several hundred patients with successful results that we are now trying to replicate in a larger study.

OMF via private community support as well as industry support launched our genomics core into high-gear this year. A state-of-the-art set of equipment for gene expression measurement (the activity of 70,000 genes at a particular time point) was acquired and put into operation at OMI. Dubbed the Sunshine Project by a generous OMF supporter, this part of the OMI Omics Core is aimed at shedding new light on what goes up and down as patients progress through their disease (and treatment) courses. Ongoing projects in the Core include baseline, severity surveys, treatment progression, and exercise and other stress testing. We are hoping that several papers will be published from this work in 2015 including an in-depth dive on a small cohort of patients.

The Core will play a major role in an observational treatment study that is being launched now around the effects of one of the gene families implicated in the DNA sequencing work ( MTHFR). With support from OMF via the patient community, OMI has launched a three site study of the effects of various supplements (including Methyl B12, Methyl Folate) given a specific genetic background. We hope that this study will begin to shed light on which patients should get what treatments as well as beginning to understand the basics of the pathophysiology of ME / CFS. Enrollment will begin in February.

In terms of documenting the functional impact of ME / CFS, our cognitive survey is gearing up. Through OpenMedNet and with the generous support of Brain Resources Inc, we plan to measure 3-4,000 ME / CFS patients with a variety of on-line cognitive instruments and their progress over time and with various stressors.   This is a key study for objectively quantifying patient disability and potentially framing treatment strategies more effectively. Enrollment is expected to begin by late March 2015.

Finally, OpenMedNet, our information platform continues to be our cornerstone and has been gathering steam. OpenMedNet has been used as an invaluable measurement instrument for many disease areas including ME / CFS.   In the ME / CFS world, it has demonstrated its strength by collecting and curating over 800 patients’ information and samples for the CDC Multi-site Study of ME / CFS. OMI is the major contracted organization for this study with supporting PI’s across the country including: Drs. Daniel Peterson, Lucinda Bateman, Charles Lapp and Rich Podell (kudos and thanks to each of them and their teams). Separately, through the OMI Clinical Research Network, OpenMedNet has now registered over 5,000 ME / CFS patients and we are gearing up for a larger public survey. Stay tuned for how you can get involved.

Research at times can be a slog of red tape, overwhelming detail and a sea of data. The great rewards are when we can see the research beginning to have a direct impact on patients’ lives. 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. I am personally grateful for your support, the dedication of all the members or our Clinical Research Network, and that of our institutional contributors and donors. We couldn’t do it without OMF’s supporters.”

Sincerely,

AK

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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