IOM Panelists: The Knowns
In this post, we present profiles of the eight members of the Institute of Medicine ME/CFS definition panel who are known to the ME/CFS community in some capacity. Many, but not all, of them are ME/CFS experts in that they work predominantly in that area. You can read about the team who put these profiles together and the methods we used in this previous post.
Important disclaimer: Many of us know one or more of these panelists quite well. They are our doctors, our colleagues, our friends. We strove to be as objective as possible, and applied all the same research methods and questions here as we did for the other panelists.
Dr. Lucinda Bateman has specialized in the treatment of ME/CFS and fibromyalgia since 2000. She was educated at Brigham Young University (BA, MS) and Johns Hopkins University (MD). She practiced general internal medicine from 1991 through 2000, and then opened her Fatigue Consultation Clinic. Dr. Bateman’s sister suffered from the disease, and died from non-Hodgkins lymphoma in 2001.
Dr. Bateman has participated in research in a variety of ways. She provided patients for laboratory studies investigating XMRV and cytokine expression after an exercise challenge (the remarkable Light studies). Given her position as a solo practitioner with no university appointment, she has also participated in clinical trials for treatments including Ampligen, Cymbalta, and the Synergy trial. Dr. Bateman has also received substantial payments for speaking and research from pharmaceutical companies, including Eli Lily, Pfizer, and Forest.
Given her significant contributions to ME/CFS policy issues, it is not surprising that Dr. Bateman was nominated to the IOM panel by at least six sources. She served on the CFS Advisory Committee (2005-2010), the Board of Directors and Scientific Advisory Board of the CFIDS Association, and the board of the IACFS/ME. She also co-founded and serves on the board of OFFER (Organization for Fatigue and Fibromyalgia Education and Research).
Dr. Bateman is a co-author on the ME-ICC definition, and withdrew her signature from the expert letter in support of the CCC. Her clinic is part of the CDC multisite study, and Dr. Bateman has participated in multiple physician education efforts, including some of the CDC’s Medscape courses. Dr. Bateman brings a great deal to the IOM panel: her experience caring for more than 1,000 ME/CFS and fibromyalgia patients; her research and clinical trial experience; her physician education experience; her general internal medicine experience; and her long dedication to participating in ME/CFS policy issues.
Dr. Lily Chu holds degrees from the University of Washington (BS, MD) and University of California, Los Angeles (MSHS) and is board certified in both internal medicine and geriatric medicine. Dr. Chu is also a patient with ME/CFS and is very knowledgeable about issues including definition, diagnosis, treatment, and disability.
Prior to her illness, Dr. Chu was a geriatrician at The Permanente Medical Group in San Francisco. She worked as part of multidisciplinary teams in her clinical practice and in her research into pain assessment in the elderly, quality of care and quality improvement. She has collaborated on articles that provided retrospective analysis, cross-sectional descriptive studies, and method reviews with a focus to improving the methods used. This experience will be of benefit as the IOM panel undertakes a systematic review to develop clinical diagnostic criteria for ME/CFS.
Dr. Chu has consulted with non-profit, academic, research and government groups on matters related to ME/CFS. She is a board member for the IACFS/ME and the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative. Her work with the Stanford initiative involves identifying and participating in activities that benefit patients, researchers and healthcare providers by expanding their knowledge base to improve care. Dr. Chu spoke on two panels at the April 2013 FDA Drug Development Workshop, and collaborated with Dr. Leonard Jason to conduct a patient survey prior to the meeting. The results of the survey were submitted to the FDA and were incorporated into the FDA report. Dr. Chu has participated in the CFS Advisory Committee’s review of the CDC website on CFS, and she was nominated to the Committee this year.
Dr. Chu was nominated to the IOM panel by at least two sources, and we found no conflicts of interest or payments from pharmaceutical companies. Dr. Chu joined in the experts’ letter advocating the adoption of the CCC. She brings the perspective of both the patient and the clinician-scientist to the panel, a combined skill set that is extremely relevant to the panel’s work.
Dr. Ronald Davis is Director of the Stanford Genome Technology Center. He has spent his career co-inventing techniques that have become the cornerstones of gene technology: the mapping of coding RNA which led to the discovery of RNA splicing; the use of restriction endonucleases for joining DNA fragments; the development of the first DNA microarray for gene expression profiling; and the method for constructing genetic linkage maps which made the Human Genome Project possible.
Dr. Davis has an incredible legacy of publications and patents. He has won numerous awards, including the very prestigious Gruber Genetics award in 2011. He was elected to the National Academy of Sciences (a sister institution to the IOM) in 1983, but has not served on any IOM committees. Based on his academic career alone, he would be a prestigious member of the panel and could address the many questions about ME/CFS and genomics.
But Dr. Davis has another qualification that has introduced him to many in the ME/CFS community: his son Whitney is very ill with ME/CFS. Dr. Davis has turned his formidable mind and experience to unraveling the genetics of ME/CFS. Through his own CFS Research Center at Stanford and his partnership with the Open Medicine Institute, Dr. Davis will sequence the entire genome of study participants and search for microbial causes of the disease (although a great deal has not been disclosed about the study design). Dr. Davis is on the board of the Open Medicine Institute but not the Open Medicine Foundation, a non-profit. OMI is a California B-corp and, among other things, is one of the participating locations in CDC’s multisite study. Dr. Davis was interviewed by Ryan Prior for The Blue Ribbon documentary, and Ryan told me that one of Dr. Davis’s comments (at approximately :21) inspired one of the slogans for the film.
Many of us had never heard of Dr. Davis prior to the IOM panel announcement, and I originally listed him as a non-expert. He was nominated by at least one ME/CFS source, and our team was excited by what we learned about him. It is quite clear that Dr. Davis brings his family experience and formidable scientific mind to the panel’s task. However, it is important to note that like many other panelists, he has no clinical experience working with ME/CFS patients and no experience in creating clinical case definitions.
Dr. Betsy Keller may not predominantly work on ME/CFS, but she has certainly become a growing contributor to the field. She received a Master’s and PhD in exercise science from the University of Massachusetts. Overall, her research has focused on childhood obesity and the effect of exercise on maximizing function through all phases of life. In the last ten years, however, Dr. Keller has followed the path of Dr. Christopher Snell and Staci Stevens investigating the role of exercise capacity in ME/CFS.
Her first ME/CFS patient exercise test was performed on an Ithaca woman who could not travel to Stevens’ lab. Dr. Keller described the same reaction to the results as Stevens experienced: there must be something wrong with the equipment. She presented research at the 2011 IACFS/ME conference, and collaborated with Dr. Maureen Hanson to provide an exercise component to Hanson’s XMRV work. Dr. Keller reportedly has additional ME/CFS studies and publications underway, and provides two-day cardiopulmonary exercise testing to ME/CFS patients.
Dr. Keller was recently nominated to the CFS Advisory Committee by Dr. Hanson, and signed on to the expert letter advocating for the immediate adoption of the CCC. Beyond that, she has not taken a public position on the ME/CFS case definition, nor does she have expertise in developing such definitions. While Dr. Christopher Snell and Staci Stevens received more nominations to the IOM panel, Dr. Keller can bring a similar expertise with two-day CPET and interpreting those unusual results in ME/CFS patients.
Dr. Nancy Klimas has earned the title “ME/CFS expert” through almost twenty years of work on this disease. She studied ME/CFS and ran a clinical practice at the University of Miami for many years. In 2012, Dr. Klimas opened the Institute for Neuroimmune Medicine at Nova Southeastern Unversity, where she also chairs the Department of Clinical Immunology.
She has consistently been among the most successful ME/CFS researchers in securing funding from NIH and the Department of Defense, including a $4 million grant announced last month. Dr. Klimas was one of the pioneers of ME/CFS crossover research, incorporating CFS patients into Gulf War studies. Her collaborations with Dr. Mary Ann Fletcher, Dr. Gordon Broderick, and others, have led to some of the most extensive work characterizing immune system abnormalities and systems networking in this field. Dr. Klimas has combined her clinical practice and research, applying information learned at bedside or bench to the other. She is participating in the CDC multisite study, and has conducted clinical trials on Ampligen.
Dr. Klimas has contributed to ME/CFS issues in numerous ways. She is past president of the IACFS/ME, served on the CFS Advisory Committee from 2007-2012, and also served on the CFIDS Association Scientific Advisory Board. She is a Principal Investigator with the Chronic Fatigue Initiative, and has spoken at hundreds of meetings including the April FDA Workshop and last month’s Mt. Sinai ME/CFS conference. Dr. Klimas has been interviewed for the Canary in the Coalmine documentary, and is perhaps most quoted for telling the New York Times that given the standard of care in 2009, she would rather have AIDS than ME/CFS.
Out of all the panelists, Dr. Klimas has probably made the most public statements on the ME/CFS case definition. She is a co-author of both the CCC and ME-ICC definitions. She signed the expert letter urging HHS to adopt the CCC. Dr. Klimas was nominated to the IOM panel by at least six sources, so it’s clear that she is widely regarded as a vocal and highly qualified expert on the subject.
Dr. A. Martin Lerner is an infectious disease specialist with an MD from Washington University School of Medicine. He served as Chief of the Division of Infectious Diseases and Professor of Internal Medicine at Wayne State University School of Medicine, 1963-1982. Dr. Lerner now treats CFS and tick-borne diseases at his Treatment Center for Chronic Fatigue Syndrome, and is a Professor in the Department of Internal Medicine at Oakland University William Beaumont School of Medicine.
Dr. Lerner believes that ME/CFS is caused by persistent herpes virus infection, including Epstein-Barr virus, Cytomegalovirus and HHV-6, singly or in combination. In both his research and clinical practice, Dr. Lerner has focused on identifying and treating these persistent infections. As part of diagnosing ME/CFS, Dr. Lerner uses 24-hour Holter ECG monitoring. He believes that abnormal results are a biomarker for CFS, and that absence of abnormal results indicates fatigue is not caused by CFS. In 2010, Dr. Lerner published the results of a retrospective review of his clinic data showing that 74% of selected patients dramatically improved after treatment with valacyclovir or valganciclovir. He presented these results at the CFS Advisory Committee Science Day on October 12, 2010.
Dr. Lerner is the only infectious disease specialist on the panel, a critical role, and reportedly is recovered from ME/CFS himself. We found no evidence of conflict of interest. Dr. Lerner is a co-author on the CCC, and signed the experts’ letter in support of adopting that definition. His strong views on the causation and diagnosis of ME/CFS are relevant to the IOM panel’s task.
Dr. Benjamin Natelson is a neurologist with a long history of both patient care and ME/CFS research. He was a Professor of Neurology and Neurosciences at the University of Medicine and Dentistry of New Jersey, now part of Rutgers University. While at UMDNJ, Dr. Natelson led one of the NIH’s CFS Cooperative Research Centers before all the centers were closed in 2002. Now Dr. Natelson provides an integrated approach to patient care and research at the Beth Israel Medical Center and Albert Einstein College of Medicine.
Dr. Natelson’s research on ME/CFS has examined the role of the central nervous system in ME/CFS and other diseases. He has researched fibromyalgia, Lyme Disease, Gulf War Illness and ME/CFS patients. Among his notable studies is the finding of unique proteome markers in the cereberospinal fluid of ME/CFS patients and evidence that CFS and fibromyalgia are different illnesses. Dr. Natelson has collaborated extensively with Dr. Dane Cook, incorporating submaximal exercise challenge into much of his work. Dr. Natelson has generally been one of the more successful researchers in obtaining NIH funding, including a $2 million grant earlier this year shared with collaborators at Weill Cornell Medical College.
Dr. Natelson’s clinical practice is widely recognized, and does incorporate very gentle physical conditioning along with other treatments. He’s written two books for patients and spoken at numerous venues, including the Massachussetts CFIDS/ME & FM Association in 2012 and the NIH State of the Knowledge meeting in 2011. His clinic is a participant site in the CDC multisite study.
Dr. Natelson was nominated to the IOM panel by at least four ME/CFS sources. He did not sign the expert letter regarding the CCC (although his wife, Dr. Gudrun Lange, did). In 1994, Dr. Natelson was part of the International CFS Study Group that contributed to the Fukuda definition. Since that time, Dr. Natelson has become a “splitter,” believing that subtypes can be identified through biomarkers and symptom constellations. His focus on the involvement of brain disease and encephalopathy in ME/CFS is highly relevant to the IOM panel.
Dr. Peter Rowe is Professor of Pediatrics at Johns Hopkins University School of Medicine, and Director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center. After receiving degrees at Trinity College (BA) and McMaster University Medical School (MD), Dr. Rowe has spent most of his professional career at Johns Hopkins. Dr. Rowe started the Chronic Fatigue Clinic in 1997, and it has grown into the largest and most respected pediatric ME/CFS practice in the country.
Dr. Rowe is a clinician-researcher, like many other ME/CFS experts, and he pioneered investigation into the orthostatic intolerance issues that frequently accompany the disease. In 1995, Dr. Rowe and his collaborators published two seminal papers on the issue. The first reported evidence of neurally mediated hypotension in seven adolescents, and the second reported the same results in 23 adults. Treatment with Florinef and/or beta blockers showed promise for treatment in both groups. In 2001, Rowe and colleagues reported the results of a placebo-control trial of Florinef in adults that did not show a statistically significant difference between the groups. However, both Dr. Rowe and many ME/CFS patients have continued to use treatment for neurally mediated hypotension and report positive results. As a result of Dr. Rowe’s work, testing and treatment for orthostatic intolerance is considered standard of care among ME/CFS experts. Dr. Rowe has pursued other hypotheses in ME/CFS research, including the connection to Ehlers-Danlos and neuromuscular strain, and has received support from NIH and non-profit sources. Dr. Rowe has presented on these topics many times, including via webinar, the NIH State of the Knowledge Workshop in 2011, and the April 2013 FDA Drug Development Workshop.
In addition to clinical and research efforts, Dr. Rowe has participated in numerous ME/CFS policy efforts. He has served on advisory boards for the CFIDS Association several times (1999-2002, 2013- present), as well as NIH grant review committees, and the NIH Chronic Fatigue Syndrome Coordinating Committee of the NIH (1999-2002). Also of note is his role as a peer reviewer on the systematic evidence review authored by Dr. Cynthia Mulrow (discussed in a previous post). Dr. Rowe has participated in some of the CDC physician education efforts, and given presentations to the CFS Advisory Committee. We found no evidence of pharmaceutical payments or other conflicts of interest.
Dr. Rowe was nominated to the IOM panel by at least seven ME/CFS sources, more than anyone else that we could confirm. He did not sign the experts’ letter and is not a co-author on any ME/CFS disease definition paper. His clinical expertise focused on pediatric ME/CFS will be an important asset to the panel, as is his knowledge of orthostatic intolerance issues associated with the disease.
Acknowledgements: This post was a group effort, and would not have been possible without the assistance and participation of Lori Chapo-Kroger, Claudia Goodell, Chris Heppner, Denise Lopez-Majano, Mike Munoz, Darlene Prestwich, Tamara Staples, WillowJ, and one advocate who wished to remain anonymous.