By Suzanne D. Vernon, PhD
In case you missed it, ME/CFS, the Institute of Medicine report and the NIH have been all over the news the past few weeks. The National Institutes of Health (NIH) announced that they are taking action to bolster research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). NIH has taken their cue from the Institute of Medicine (IOM) that recommended new diagnostic criteria for ME/CFS in a report published in February 2015 and the Food and Drug Administration (FDA) has emphasized the need for safe and effective treatments since focusing on ME/CFS in 2012. But perhaps the most persuasive influence on NIH and the other government agencies has come from the patients who have used technology to unite and make their voice heard. Social media, petitions, blogs (like occupycfs.com and healthrising.com) and websites (like MEAction.org) have made it impossible the government to ignore millions of people suffering with ME/CFS.
Perhaps all of the media coverage has left you wondering what this really means. Since Dr. Bateman was on the IOM committee that produced the landmark report and I worked for the government for almost 20 years, we thought we could help cut through the noise.
First, here is what’s happening at the NIH. A study will start at the NIH Clinical Center –the world’s largest research hospital – where only patients that participate in research on specific diseases are admitted. The details of the ME/CFS study have not yet been released but it looks like it will focus on ME/CFS patients that had a sudden, flu-like onset. The main objective will be to understand what is going on at the biological and molecular level when someone develops ME/CFS following an infection. We will keep you posted on the study details as they become available.
One thing is certain – this ME/CFS study is going to generate some long overdue BIG DATA! I intend to be among the first to submit a BIG DATA analysis proposal to NIH. I plan to work with the best computational biologists to get to the bottom of ME/CFS.
It was also announced that the Trans-NIH ME/CFS Research Working Group will be chaired by the Director of the National Institute of Neurolo
gical Disorders and Stroke (NINDS), Walter J. Koroshetz, M.D. This refreshed working group with new leadership will help reinvigorate, coordinate and support ME/CFS activities at NIH. The working group will explore ways to fund scientists interested in conducting ME/CFS research at their institutions. This means that a new “Request for Applications” (RFAs) may be on the horizon in 2016 – and it is important to note that there has not been an ME/CFS RFA in 10 years.
For far too long, the ME/CFS community has been diminished and dismissed. With a bad disease name, poor research investment, scattered focus and false claims the patients have endured and fought for something better. A handful of researchers and doctors, like my colleague Dr. Bateman, have worked tirelessly to make change happen; champions that at times have worked at great personal sacrifice to forge a better way for our ME/CFS patient community. I believe it is all beginning to pay off. The wheels of change move far too slowly on a federal level, but they are moving. We are building a better future for all those impacted by ME/CFS. It is an exciting time to be on this journey with you!
Suzanne D Vernon, PhD
Research Czarista, Bateman Horne Center
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As this new chapter for ME/CFS unfolds and news of important opportunities and progress breaks, the Bateman Horne Center will help break it down and make sense of it for you. Sign up for our blog updates and e-news to stay informed.
BHC is led by Dr. Lucinda Bateman and Suzanne D. Vernon, Ph.D., who together bring more than 40 years of combined experience and leadership to treating patients and advancing research in the areas of ME/CFS and Fibromyalgia. Together with a stellar volunteer leadership team – we are working towards a world where patients with ME/CFS and Fibromyalgia are readily diagnosed, effectively treated, and widely met with empathy and understanding.
The Bateman Horne Center
Empowering Patients, Advancing Research, and Improving Clinical Care
for all those impacted by ME/CFS and Fibromyalgia
Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), the Bateman Horne Center of Excellence (BHC), was formed in 2015 as a 501(c)3 nonprofit organization.
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career - the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.