We are pleased to announce that Nevada Center for Biomedical Research (“NVCBR”) has achieved a critical milestone. The Nevada System of Higher Education Board of Regents approved a new contract resulting in the integration of NVCBR’s basic research program and its associated research assets into the University of Nevada, Reno School of Medicine’s expert research community. This major move will provide greater visibility for ME/CFS research as it becomes an integral part of the University’s research efforts.
All other key activities including patient outreach, community education, and advocacy will continue through our organization. We will remain in our current office area on the University of Nevada, Reno School of Medicine campus within the medical office building of the Center for Molecular Medicine (“CMM”). We will continue to provide grant support in the form of equipment and office space at this location so that private medical practices can continue to serve patients impacted by ME/CFS and similar diseases.
Given that our organization will no longer be responsible for the basic research program, we have chosen to return to our original name, Whittemore Peterson Institute, a name honoring an impacted family member and the doctor who diagnosed and treated her for many years. Watch for more announcements about a special project coming to the institute.
During the month of August, NVCBR held its annual community fundraiser, Cheers! We hosted approximately 150 guests at The Grove at South Creek. We are deeply grateful for the generosity of our many community members who made cash donations and/or provided us with amazing auction items and for the help of Jon Klacking of Double Bond Wines and Tony King of Southern Glazers who donated most of the tasty wines. A delicious dinner was prepared by the expert chefs at The Grove as guests learned more about the work of the institute. Several reporters at Reno’s local news stations interviewed Annette Whittemore about the institute and the important role that medical research plays in uncovering the causes of ME/CFS. Kristin Remington of KRNV News 4 created a short but very insightful story that aired on the evening news and again at the Cheers event. Click here for the story.
Up-to-date education about diseases like ME/CFS, post treatment Lyme, and fibromyalgia is vital to creating a realistic understanding of the impact that infection associated, immune-mediated diseases can have on one’s life. Education will also help others learn about the ways in which the institute is trying find the answers for these patients. To address the goals of educating our community members and medical students we have planned two open houses to be held on November 1, 2018. The first event, geared towards patients and interested medical students, will feature Dr. De Meirleir and Dr. Lombardi from noon to 1:00. They will provide short reviews on their current medical and research progress. The second event will be held at the institute as a way to further educate our community business owners about the work of the institute and its mission to support the neuroimmune community.
The National Institutes of Health determined not to renew the federal advisory committee’s charter for ME/CFS, or the CFSAC, by letting it expire. This committee was formed 16 years ago to share critical disease information and advice with the Secretary of Health. As a result, many were concerned that the NIH would no longer formally address the urgent need for diagnostic and treatment protocols for this disease population. However, the NIH followed the demise of CFSAC with an announcement of the formation of a working group to help advance ME/CFS research priorities.
The following information was taken directly from the NIH website.
NANDS Council Working Group for ME/CFS Research
In May of 2018 the National Institute of Neurological Disorders and Stroke (NINDS) announced the creation of a Working Group of the National Advisory Neurological Disorders and Stroke (NANDS) Council focused on how best to advance research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The Working Group was formed in summer 2018 and is composed of scientists, clinicians, representatives from advocacy organizations and individuals with ME/CFS, and is chaired by Dr. Steve Roberds, a member of the NANDS Council. The group held an introductory teleconference on September 4, 2018, during which Dr. Walter Koroshetz, NINDS Director, charged the group with providing scientific guidance on how best to advance research in ME/CFS at NIH. This includes identifying gaps and opportunities in ME/CFS research, considering unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators in this field, and identifying potential approaches to enhance ongoing research collaboration and communication between relevant advocacy organizations, individuals with ME/CFS, researchers, and federal agencies focused on funding research in ME/CFS. To inform these activities, the Working Group will seek input broadly from stakeholders (including people with ME/CFS, researchers and clinicians, and advocacy organizations) and other federal agencies, and will frame its findings in the context of ongoing activities.
We look forward to the development of successful and fast acting strategies to help solve the many questions still surrounding ME/CFS. To learn more please visit https://www.ninds.nih.gov/About-NINDS/Who-We-Are/Advisory-Council/ME-CFS-Working-Group
August 17, 2018
6:00 pm to 9:00 pm
The Grove at South Creek
On Friday, August 17, Nevada Center for Biomedical Research (NVCBR) will host Cheers, its annual fundraising event to benefit treatment discovery for myalgic encephalomyelitis (ME) (also called ME/CFS). The event will take place from 6:00 p.m. until 9:00 p.m. at The Grove at South Creek. The event will feature select wine and champagne and delicious food. Guests will have plenty of opportunities to take home unique items and experiences by participating in the silent auction and fun games.
The proceeds from Cheers are crucial to making advances in ME, a debilitating disease without medical solutions. Multiple sclerosis (MS) and ME have a similar serious impact on patients, but they are miles apart when it comes to medical options. While there are 25 FDA-approved drug treatment choices for those with MS, there are none approved for ME patients. Providing support for the discovery of medical answers and sharing that information with the world are our most critical challenges.
We hope that you join NVCBR’s efforts to change the world of ME by spending a fun-filled evening with our community at our annual Cheers fundraiser. Tickets are limited so buy yours today!
Silent auction bidding begins online on 07/17/2018. Visit https://www.biddingowl.com/NVCBR to browse items. In July start bidding early and bid often!
Our Generous Sponsors…
- The Whittemore Patterson Family
- Tim Tucker
- The Whittemore Group
- Glenn & Lamise Carano
- Tom & Vicki Reviglio
- Dr. Francine Mannix
- The Moss Ghusn Family
- Rich & Tiffany Williamson
- Charles “Alan” Whittemore
- Dick & Jean Rottman
- Tim & Carol Dyhr
- Paul & Sandy Goad
- Barry & Linda Rosenthal
- Shanti and Banmali Rawat
- A&H Insurance
With special thanks…
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.