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.
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.