I’m excited to share with you some of the Institute’s latest news! With the support of our donors and the State of Nevada, we continue to make critical progress in the diagnosis and treatment of ME/CFS, a complex and disabling disease process.
The Institute participated in a recently published retrospective study identifying specific biomarkers from hundreds of patient tests that were conducted as part of Dr. De Meirleir’s medical evaluations. These four blood tests, which were found to separate ME/CFS patients from controls with a high degree of specificity and sensitivity, are already available to the medical community.
“These findings emphasize the organic nature of this disease,” stated Dr. De Meirleir, study coauthor and Institute Medical Director.
Myalgic encephalomyelitis (ME) is a complex and debilitating disease that often initially presents with flu-like symptoms, accompanied by incapacitating fatigue. Currently, there are no objective biomarkers or laboratory tests that can be used to unequivocally diagnosis ME; therefore, a diagnosis is made when a patient meets a series of a costly and subjective inclusion and exclusion criteria. The purpose of this study was to evaluate the utility of four clinical parameters in diagnosing ME. The research team utilized logistic regression and classification and regression tree analysis to conduct a retrospective investigation of four clinical laboratory markers in 140 ME cases and 140 healthy controls. They found that certain parameters may help physicians in their diagnosis of ME and may additionally shed light on the pathophysiology of this disease.
“Evaluation of four clinical laboratory parameters for the diagnosis of myalgic encephalomyelitis” can be found online in the Journal of Translational Medicine at https://translational-medicine.biomedcentral.com/a…
Congratulations to Dr. Vincent Lombardi, for being chosen as one of the 2018 Ramsey Award recipients.
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
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