The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), and Centers for Disease Control and Prevention (CDC) recently assembled an external working group of international experts and patient advocates to develop a set of ME/CFS Common Data Elements (CDEs) for use in clinical research. The ultimate goal is to standardize the collection, analysis, and comparison of data across the research community to address the problem of variability in ME/CFS research. The draft version of the ME/CFS CDEs is available for public review and comment until January 31, 2018. We encourage the ME/CFS community to take the time to review the draft CDEs and provide comments prior to the general release in February 2018. You can view the draft CDEs and more information about the project at https://commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards.
November 2, 2017 • 6:00 p.m.
William N. Pennington Health Sciences Building
University of Nevada, Reno
NVCBR and Simaron Research are pleased to bring UNREST, the Sundance award-winning documentary about ME, to our community. We are hosting a screening of this noteworthy film at the William N. Pennington Health Sciences Building on the University of Nevada, Reno campus on Thursday, November 2, 2017, at 6:00 p.m. Our hope is to help our community to better understand ME, a widespread disease you can’t see. View the trailer at https://www.unrest.film/trailer
Twenty-eight year-old Jennifer Brea is working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome.
At its core, Unrest is a love story. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure. Their struggle to forge their relationship while dealing with her mysterious illness is at once heartbreaking, inspiring and funny.
Unrest world-premiered January in the documentary competition at the 2017 Sundance Film Festival, where it won the Special Jury Prize for editing. It has since screened at SxSW, CPH:DOX, HotDocs, River Run (Audience Award for Best Documentary Feature), the Nashville Film Festival (Grand Jury Award for Best Documentary Feature), the Sheffield Doc/Fest (Illuminate Award), the New Zealand International Film Festival, and the Melbourne International Film Festival. It also has a companion VR piece which premiered at Tribeca and won the Jury Award for best VR at Sheffield/DocFest.
This past May, several Nevadans, including NVCBR board member Nancy Ghusn, Julia Abts and her daughter Kendal, and NVCBR President and CEO Annette Whittemore, traveled to Washington, DC, to join other advocates from around the country in support of increased federal research funding. The Solve CFS Initiative organized this country-wide effort and kept things running smoothly throughout the trip. We were fortunate to meet with Senator Heller in person at a time when Congress was extremely busy considering the repeal and replacement of the Affordable Care Act. We also met with Senator Cortez-Masto’s and Congressman Amodei’s aids in an attempt to educate them of the dire need for more research funding. While no promises were made with regards to funding, the Nevada representatives indicated that they would help with the support of congressional report language. We are pleased that Nevada’s congressional members recently followed through by signing a letter in support of ME/CFS funding. It is encouraging to know that our Nevada representatives are well informed and committed to helping the millions of Americans who are impacted by ME/CFS.
Last spring, the NVCBR team wrote an extensive U54 grant to advance the diagnosis and treatment of ME/CFS through a collaborative research center to study ME/CFS with an emphasis on biomarker discovery and dysregulation of the gastrointestinal mucosal immune system. Although NVCBR was not chosen as one of the three research center sites, we will continue to pursue these critical areas of research.
Like the many other researchers in this field who were not chosen by the NIH to receive grant funding, NVCBR researchers must rely heavily on private donations to keep their critical research studies moving forward. Included in NVCBR’s list of promising studies are plans to create a mouse model of the disease and a gut study to determine the role of the mucosal immune system and the microbiome in ME/CFS. These studies will be integral in determining which treatments would be most effective before conducting human trials.
Significantly, past NVCBR research studies have resulted in the discovery of a unique set of antibody biomarkers that were found to identify ME/CFS patients from controls with a high degree of sensitivity and specificity. This signature could lead to the development of the first clinical diagnostic blood test for ME/CFS. NVCBR’s collaboration with Arizona State University researchers brought expert scientists into this field who had not been involved in this disease before our collaborative antibody study. Studies are continuing in an effort to identify the most important factors driving the antibody responses. This information will add to our understanding of the causes of disease and to better treatments.
Open dialogue between research organizations remains a possibility and a dream of those whose loved ones are still suffering from lack of effective treatments and the medical ignorance that continues to surround this disease. We know that it is really only a matter of time and will power. But time is passing quickly. It is our greatest hope that researchers around the world will agree to come together to form a world-wide alliance. If and when this occurs, we will be able to achieve our goals much more quickly and with much less cost to each organization.
August 18, 2017
6:00 pm to 9:00 pm
The Grove at South Creek
Join Nevada Center for Biomedical Research (NVCBR) in support of scientific discovery and treat yourself to an entertaining evening at The Grove at South Creek!
Indulge in delectable food created by talented chefs at The Grove while enjoying delicious champagne and wine donated by Southern Glazer’s Wine & Spirits. Between tastings, browse a silent auction and listen to live music performed by The Socks, a Reno-based instrumental duo specializing in unplugged versions of great alternative rock hits, as well as their own original songs.
Your generous donation will support NVCBR’s research studies focused on a spectrum of complex disabling diseases. Our current research is closing in on a diagnostic blood test for ME/CFS. These innovative studies are also providing key information about the causes of disease.
Buy your tickets in advance and save!
This year we’re using mobile bidding for our auction. To bid on items, register at https://www.biddingowl.com/Auction/Bidders/register.cfm. You can bid online now at http://www.biddingowl.com/Auction/index.cfm?auctionID=11903.
Bid early and bid often in support of scientific discovery!
by Cort Johnson | Mar 21, 2017
A Different Look at the Immune System
The ultimate goal of this work is the development of a non-subjective clinical tool for diagnosing patients with ME. Lombardi et. al.
Last month Health Rising looked at a potential ion channel biomarker coming out of the NCNED in Australia. This month brings yet another potential biomarker hailing from the Nevada Center for Biomedical Research (formerly WPI) at the University of Reno. Time will tell if either turns out. In the meantime it’s good to see ME/CFS research centers using innovative techniques to look at this disease in entirely new ways.
Immunosignatures use antibody activity to get an idea of what the immune system is reacting to. The idea is that B-cells are involved in some way in most immune responses. Finding which peptides or antigens the antibodies in a person’s blood bind to could tell us what the immune system is reacting to. If ME/CFS is, at least in part, an immune disease, immunosignature research could tell us much. This approach has been used to provide diagnostic biomarkers for cancer, Valley fever, Alzheimer’s disease and others.
Talk about casting a large net. First antibodies are incubated with or exposed to thousands or in the case of this study over 100,000 randomly generated peptides (short-chains of amino acids). Because so many different peptides are used, the immunosignatures produced by this technique can be highly sensitive (i.e. highly accurate in identifying patients). They’re far more sensitive than say an ELISA blood test that might sum the contributions of several antibodies.
The technology used to produce immunosignatures is also very robust; a single drop of blood blotted on some paper and sent through the mail can suffice. It’s also potentially much more stable than the cytokine studies that have, at times, been so variable in ME/CFS. Because antibodies are much more stable than cytokines (they last longer in the body), they might yield better results. Read More
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