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Simmaron Celebrates 2016 & Matching Year-End Grant!

$100,000 Year End Matching Gift Opportunity: A generous donor will match your gift between now and December 31, 2016, doubling your impact!

 

Simmaron Powers the Rise of ME/CFS Science in 2016!

The last 18 months produced extraordinary change in the ME/CFS field, and Simmaron’s work has played a pivotal role. We could not have had such a strong impact without the generous support and participation of the ME/CFS community.

The publication of the Columbia-Simmaron spinal fluid studies in 2015 coincided with reports by The Institute of Medicine and the NIH Pathways to Prevention initiative to propel a transformation of the federal ME/CFS program. Columbia University’s work and our collaborations with them and others have put immunological research at the center of this renewal in ME/CFS science.

NIH Study to Replicate & Deepen Columbia Findings

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A year ago, the Director of the National Institutes of Health announced a renewed commitment to ME/CFS research and the first intramural study of the disease in at least 20 years. The NIH study is designed to replicate Columbia’s findings with deep immunological, neurological and genetic testing. Advisors to the study include Dr. Ian Lipkin of Columbia University, Dr. Elizabeth Unger from the U.S. Centers for Disease Control, and recently Dr. Daniel Peterson.

A critical design element of the study is the criteria for enrollment, which requires “post-infectious” onset following the example set by Drs. Lipkin, Peterson and other clinicians in the XMRV study 5 years ago. Enrollment of controls has begun, and disease subjects will be enrolled early in 2017. Dr. Peterson and Simmaron are proud to have played a role in the strategic foundation of this unprecedented study.

NIH Funding Grows for ME/CFS

… NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016.” Science Magazine

After years of advocacy by many patients, organizations and clinicians, the NIH is funding more ME/CFS centered research proposals. Science Magazine reports, “Vicky Whittemore, the agency’s CFS point person in Bethesda, Maryland, delivered on a promise that the NIH Director Francis Collins made last year by announcing that NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016.” We hope this upward trajectory holds and brings increasing levels of federal research funding to our disease in years to come.

Simmaron is a collaborator in 3 NIH-funded grants and will continue to form collaborations that bring funding and excellence to our community.

Centers of Excellence

NIH has also announced that it will formally issue Requests for Applications in December to create one or more “collaborative research center” and data management center for the disease. Dr. Peterson, Simmaron and the broader community have long advocated for centers of excellence, and we hope these RFAs will be a strong step toward fulfilling that urgent need.

Simmaron’s work with Dr. Peterson and Sierra Internal Medicine has helped increase the impact of his 30-year center of excellence, by increasing the breadth and reach of his clinical research while he relentlessly seeks better care for patients.

5-year Anniversary5th-birthday-258x300

Simmaron celebrates 5 years of pursuing clinical research for ME/CFS and complex neuro-immune diseases with a goal of improving treatments for patients. In our short life, we have raised almost $2 million, and collaborated with Columbia University, CDC, NIH, Griffith University, SUNY-Albany, Open Medicine Institute, and Cornell University on immune-related research.

We are grateful for the generosity of our donors, the strategic vision of Dr. Peterson, the excellence of our collaborators, and the support of patients and volunteers who keep our program running. We believe the strategic vision of our research has, and will continue to, create the pilot data that is instrumental in guiding future research in the best direction, based on the unmatched clinical expertise of Dr. Peterson. We believe our strategy is solid and our impact great, and we have much more good work to do.

With your generosity, we can bring scientific answers to the ME/CFS disease and better treatments to neuro-immune patients. Thank you again for your treasured support.

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Research Updates

While our early collaborations provided building blocks for an improved federal research program, our current studies seek to refine our scientific understanding of immune impairment, replicate new findings in the field, and generate data and leads for much needed medical treatments. The more research we do and fund with our collaborators, the more we will shape NIH’s new work and the future of patient care.

As the number of projects have increased, so too has our research team. The aggregation of copious amounts of biological specimens and clinical data requires intelligent and committed individuals. Our long-standing internship program has fulfilled much of this labor gap. In addition to helping us get the work completed, these internships allow college students to experience clinical research and modern medicine first hand.

Columbia Collaborations

Spinal Fluid Study, Phase I: Additional publications are in the writing and review stage to document additionPresentation1al findings from our ground-breaking spinal fluid collaboration with Columbia.

Spinal Fluid Study, Phase II:  The second phase of the Columbia spinal fluid study is in progress. The metabolomics portion of this study has been refined to seek replication of the recent findings published by Dr. Naviaux in the Proceedings of the National Academies of Science showing a hypometabolic state similar to “dauer” or hibernation.

Microbiome Study:  Simmaron is nearing completion of sample collection for Columbia’s microbiome study. A healthy gut microbiome is essential to immune function. Recent advancements in gene sequencing platforms allows understanding this essential environment to be much more feasible.

Exercise Tolerance and Immune Implications: Marked exercise intolerance, or one’s inability to recover from an exercise challenge, is a hallmark symptom of ME/CFS. Although immune perturbations after exercise have been identified in the blood of ME/CFS patients, no group has identified changes in the gut microflora before and after exercise, which this study will do.

Spinal Fluid Special Cases: Identifying subpopulations or subgroups of ME/CFS patients has been a primary goal of many researchers in the field. Our unique access to spinal fluid from hundreds of patients at Sierra Internal Medicine has been essential to this process. In this study we have identified several ME/CFS cases that later developed malignancies and autoimmune diseases. We hope that this study will further delineate subpopulations of this very heterogeneous population.

Spinal Fluid Lymphoma Project: Dr. Peterson and Columbia have designed this project to further characterize and study his patients who have developed Lymphoma. The study is designed and in progress.

CDC Collaborations

CDC Multisite Clinical Assessment of ME/CFS: Simmaron is preparing for Year 5 work on this 7-site collaboration. cdc-logoThe CDC study is the largest study of ME/CFS, collecting data and samples from more than 800 patients and controls selected and diagnosed by top clinical experts in the country. The first manuscript from the study is currently under review for publication.

Data Analysis of Immune Measures During Treatment: Simmaron is collaborating with CDC to analyze patient data from treatments at Sierra Internal Medicine.

Other Important Collaborations

Autoimmunity and Non-Hodgkins Lymphoma in ME/CFS: In collaboration with SUNY-Albany, Simmaron is studying the incidence of autoimmune diseases and lymphomas in families of ME/CFS patients. The study is nearing completion.

Arthropod-Borne Disease in Post-Infectious Fatigue:  Simmaron is collaborating with Coppe Healthcare Solutions (formerly Wisconsin Viral) to identify the incidence of vector-borne pathogens in the cohort of ME/CFS patients and controls biobanked during the federal XMRV study.

Genomic and Functional Analysis of Immune Receptors in CFS: This collaboration with Dr. Barao at University of Nevada Reno seeks to identify whether genetic variations in the genes coding for immune receptors play a role in ME/CFS. This study is ongoing.

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3 Comments

  • Erik Johnson

    December 9, 2016 at 3:59 pm - Reply

    I really see no reason for “top CFS researchers” and the CDC to ignore the actual evidence that caused Dr. Cheney and Dr. Peterson to call the CDC for help in 1985.

    https://cfsuntied.net/2015/09/08/cfs-the-invisibled-disease/

  • Joan Trowell

    December 28, 2016 at 8:38 pm - Reply

    Keep up the good work!

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