The National Institutes of Health is strengthening its efforts to advance research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disease for which an accurate diagnosis and effective treatment have remained elusive. The actions being taken include launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS and re-invigorating the efforts of the long-standing Trans-NIH ME/CFS Research Working Group with the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute research effort.
“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH Director Francis S. Collins, M.D., Ph.D. “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”
NIH’s direction on the disease is being guided by a recent Institute of Medicine report , that recommended new diagnostic criteria and a new name for the disease (Systemic Exertion Intolerance Disease), and an NIH-sponsored Pathways to Prevention meeting that generated a position paper and report with recommendations for research strategies.
The symptoms result in significant functional impairment accompanied by profound fatigue. Because the pathology of ME/CFS remains unknown and there is no test to diagnose the disease, studies to date have used different criteria for diagnosis, which has limited the ability to compare results across studies. Additionally, many of the published studies are based on small study populations and have not been replicated.
In an effort to remedy this situation, NIH will design a clinical study in the NIH Clinical Center with plans to enroll individuals who developed fatigue following a rapid onset of symptoms suggestive of an acute infection. The study will involve researchers from NINDS, the National Institute of Allergy and Infectious Diseases, National Institute of Nursing Research and National Heart, Lung, and Blood Institute. The primary objective of the study is to explore the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.
NIH will also be considering additional ways to support ME/CFS research in the extramural research community. Since the root cause of ME/CFS is unknown and the manifestations of the disorder cut across the science interests of multiple NIH institutes and centers, a trans-NIH working group will be needed to assist that plan. NINDS Director Walter J. Koroshetz, M.D., will chair the Working Group along with Vicky Holets Whittemore, Ph.D., the NIH representative to the U.S. Department of Health and Human Services’ Chronic Fatigue Syndrome Advisory Committee. One goal of the group will be to explore how new technologies might shed light on what causes ME/CFS. The Working Group includes representation from 23 NIH institutes, centers and offices.

Researchers have found that two treatments for Chronic Fatigue Syndrome have long term benefits for people affected by the condition.
The team from Oxford University, King’s College London and Queen Mary University of London were following up patients who took part in a study published in 2011, funded by the Medical Research Council. In that study they looked at four potential treatments for Chronic Fatigue Syndrome (CFS) and found that cognitive behavioural therapy
(CBT) and graded exercise therapy (GET) achieved better outcomes than standard medical care (SMC) and adaptive pacing therapy (APT) at one year.
In this study they contacted the people who took part in the original study to find out how they were fairing two and a half years after starting the treatments.
Three quarters of the original trial participants took part in the follow up. It showed that the improvements in fatigue and physical functioning seen at one year in the trial with CBT and GET were maintained in the long-term.
Professor Michael Sharpe from the University of Oxford said: 'The finding that participants who had cognitive behavioural therapy and graded exercise therapy had maintained their improvement over 2 years after entering the trial, tells us that these treatment can improve the long-term health of people with CFS.'
The team also found that participants who originally had CBT or GET were less likely to have sought additional therapy after the trial than those who originally had standard medical care alone or APT.
Dr Kimberley Goldsmith from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London said: 'We found that participants who had originally been given SMC or APT appeared to be doing as well as those who had CBT or GET in the longer term. However as many had received CBT or GET after the trial, it does not tell us that these treatments have as good a long term outcome as CBT and GET.'
There were no significant differences between the four original treatment groups in the number reporting a long-term deterioration in their general health (around 1 in 10 of each group). This showed that there was no evidence that those who received CBT and GET were more likely to worsen in the long term.
Professor Peter White from Queen Mary University of London said: 'Finding no significant differences in the proportions getting worse over time is a reassurance for those who worry that some of these treatments might make things worse. But it is also a reminder that these treatments do not help everybody, and more research is needed into finding other treatments that help.'
See abstract of study at: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366%2815...

FORT LAUDERDALE-DAVIE, Fla. – Nova Southeastern University (NSU) Executive Vice President and Provost Ralph V. Rogers Jr., Ph.D., recently presented Nancy Klimas, M.D., with the 5th Annual Provost’s Research and Scholarship Award.
The purpose of the award is to recognize a faculty member who has demonstrated significant achievement in support of NSU’s mission to foster scholarship, intellectual inquiry, and academic excellence.
Research and scholarship are two of NSU’s eight core values, and excellence in these areas enhances education, patient care, and public service, and develops superior scholarship.
“We are proud of Dr. Klimas for exemplifying NSU’s Core Values through her groundbreaking research in the field of neuro-immune medicine,”
said Dr. Rogers.
The announcement was made at the External Funding Recognition Reception, hosted by Gary S. Margules, Sc.D., vice president of NSU’s Office of Research and Technology Transfer, at which faculty members from all disciplines across the university are recognized for their commitment to advancing their fields of study.
 “I am humbled by this honor and accept this award on behalf of my team of world-class researchers in the hopes that our discoveries will make a true difference in the lives of those facing neuro-immune disorders,” said Dr. Klimas. “I am proud to be a part of the NSU family and work with researchers in a diverse array of fields.”
Dr. Klimas has achieved international recognition for her research and clinical efforts in multi-symptom disorders, chronic fatigue syndrome and myalgic encephalomyelitis (CFS/ME), Gulf War illness (GWI), and fibromyalgia. Among many other honors, Dr. Klimas was the recipient of the 2014 Perpich Award by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) for distinguished community service. She also was featured as a “Woman to Watch” on WFOR CBS 4.
She currently serves as director of NSU’s Institute for Neuro-Immune Medicine, professor of medicine, and chair of the Department of Clinical Immunology at NSU’s College of Osteopathic Medicine. She is also professor emerita at the University of Miami School of Medicine, director of clinical immunology research at the Miami Veterans Affairs Medical Center (VAMC) and leads the GWI and ME/CFS clinical and research program at the Miami VA.
Dr. Klimas is a diplomate of the American Board of Internal Medicine and a diplomate in diagnostic laboratory immunology. She is a past president of the IACFS/ME and is also a member of the VA Research Advisory Committee for GWI, the National Institutes of Health’s (NIH) P2P CFS committee, and served on the Institute of Medicine’s ME/CFS review panel.
Klimas has advised three U.S. secretaries of health and human services during her repeated service on the U.S. Department of Health and Human Services CFS Advisory Committee. She is currently funded by the VA, Department of Defense and NIH to study these complex disorders using a systems biology approach with a strong focus on illness models that lead to therapeutic targets and clinical trials.

​Two of the nation’s leading experts on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—Bateman Horne Center Chief Medical Officer Dr. Lucinda Bateman, MD and Researcher Dr. Suzanne D. Vernon, PhD—announce their partnership to quantify diagnostic criteria recommended by the Institute of Medicine (IOM) of the National Academy of Sciences. 
Dr. Bateman was a member of the IOM Committee that penned the 304-page report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Released in February 2015, the report recommended diagnostic criteria for the main disease symptoms: fatigue that impairs normal activity, post-exertional malaise, unrefreshing sleep, cognitive impairment and orthostatic intolerance.
“If we are ever to mainstream medical care for the millions who suffer terribly from this disease,” says Dr. Bateman, “there must be diagnostic tests. Dr. Vernon’s experience in identifying biomarkers, establishing biobanks and cost-effectively gathering large amounts of real-life, real-time data will close in on this reality.”
Dr. Vernon will spend the next several months finalizing the research initiative’s design with data collection and analysis continuing into 2016 and beyond. “I’ve had great success recruiting innovative partners and rock star scientists into ME/CFS research,” says Dr. Vernon. “Now Dr. Bateman and I will establish Bateman Horne Center as a center of excellence for research and clinical care.”