Editors’ note: Christin Veasley, the Executive Director of the National Vulvodynia Association and Co-founder of the Chronic Pain Research Alliance sent this report on an August 2012 NIH workshop on overlapping pain conditions, which resulted in a set of research recommendations for the field. We are posting this piece to spread awareness and stimulate further discussion of this initiative. Please contribute your thoughts below.
Since 2009, the National Vulvodynia Association, in cooperation with the Chronic Fatigue and Immune Deficiency Syndrome (CFIDS) Association of America, Endometriosis Association, and The TMJ Association, has led the Chronic Pain Research Alliance (CPRA)—the first and only collaborative advocacy effort in the US dedicated to advancing both disorder-specific and collective federal research efforts on eight prevalent but longtime neglected pain disorders that frequently co-occur and disproportionately affect women. They include: vulvodynia, temporomandibular disorders (aka TMJ), fibromyalgia, endometriosis, chronic fatigue syndrome, chronic headache, interstitial cystitis/painful bladder syndrome, and irritable bowel syndrome.
Recently, the Alliance worked to encourage the National Institutes of Health (NIH) to convene the first federal scientific meeting focused solely on overlapping pain conditions. A diverse group of clinical and basic science researchers came together with the goal of developing a strategic research plan to identify both unique and shared underlying disease mechanisms, as well as effective evidence-based treatment strategies. In a letter sent to NIH Director Dr. Francis Collins prior to the workshop, US Senators Bernie Sanders (I-VT), Tom Harkin (D-IA), and Sheldon Whitehouse (D-RI) expressed their concern about the number of women affected by these disorders, as well as their impact on rising healthcare costs and women’s health and quality of life. They urged the NIH to lay out clear and concrete recommendations for an aggressive, NIH-wide research agenda to accelerate scientific progress in this understudied area, and for the Trans-NIH Working Group on Chronic Overlapping Pain Conditions to swiftly implement them.
A Workshop on Chronic Overlapping Pain Conditions convened in August 2012 and was sponsored by the National Institute of Neurological Disorders and Stroke and the National Institute of Dental and Craniofacial Research, together with the NIH Pain Consortium. Meeting co-chairs were Daniel Clauw, MD, professor of medicine in the division of rheumatology at the University of Michigan, and Elizabeth Unger, MD, PhD, chief of the Chronic Viral Diseases Branch at the Centers for Disease Control and Prevention. CPRA organizational leaders Terrie Cowley (TMJ Association), Kim McCleary (CFIDS Association), and NVA’s Christin Veasley participated as panelists, as did NVA and CPRA medical-scientific advisory board member Ursula Wesselmann, MD, PhD, professor of anesthesiology at the University of Alabama. Several other CPRA scientific advisory council members served as panelists, including Allen Cowley, Jr., PhD, chairman of physiology at the Medical College of Wisconsin; Karen Berkley, PhD, professor of neuroscience at Florida State University; Jon Levine, MD, PhD, director of the NIH Pain Center at the University of California, San Francisco; Richard Lipton, MD, chair of the department of neurology at Albert Einstein College of Medicine; William Maixner, PhD, DDS, director of the Center for Neurosensory Disorders at the University of North Carolina, Chapel Hill; and Suzanne Vernon, PhD, scientific director of the CFIDS Association.
The objective of the two-day meeting was to develop a forward-thinking and coordinated strategy to guide future research efforts in: developing diagnostic criteria for overlapping pain conditions; understanding risk factors associated with their development and persistence; discovering common trajectories of their onset, progression, and reversal; delineating disease mechanisms; and developing outcome measures for clinical research. It incorporated short presentations by panelists, along with extensive discussion periods. Breakout groups met separately to discuss knowledge needed, research opportunities, and training needs in several topic areas, and the meeting concluded with attendees reconvening to discuss recommendations from the breakout groups.
The panel identified six critical needs areas upon conclusion of the workshop. First, the group deemed it essential that the NIH quickly develop a case definition for chronic overlapping pain conditions, as well as standardize terminology and classification, to ensure that scientists and clinicians from different institutions share a common language and that study findings across the board are comparable and can be generalized to the wide spectrum of sufferers. Likewise, the panel recommended that basic (preclinical) and clinical research be coordinated right from the start so that what’s being studied in the laboratory setting is applicable to the clinical population (and vice versa). The group agreed that longitudinal studies, i.e., studies that follow the same group of people, sometimes up to a decade or longer, and collect information and/or biological samples several times over the course of the study, are needed to understand how overlapping pain conditions develop and persist, and to study what is different between those with one condition versus multiple pain disorders. Since sensitivity of the central nervous system (i.e., brain and spinal cord) is a consistent finding across various pain diagnoses, the panel felt that studying this phenomenon could lead to the discovery of common mechanisms that underlie these disorders. Additionally, simple and easy-to-use measures of central sensitivity could be developed and used as diagnostic markers in the clinic, and healthcare providers may be able to treat multiple conditions simultaneously with the same therapeutic intervention by targeting the mechanisms of central sensitivity.
Further, there are several large, ongoing studies that already include patients with some of these disorders, such as the NIH’s Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network and the University of North Carolina’s program project, Complex Persistent Pain Conditions: Unique and Shared Pathways of Vulnerability. The panel felt that it was very important to coordinate efforts between these studies, and for investigators to maximize the utility of resultant data and information, as well as to develop a central repository for storage and analysis of biological specimens and biomarkers. Since this area of research is relatively new, and the number and quality of scientists interested in researching these conditions is beginning to expand, the panel recommended that the NIH develop multidisciplinary training programs for both scientists who conduct their research at the NIH itself and for those from universities and institutions across the country who receive NIH grants to support their research. Finally, since medical research is conducted with the main goal of translating its findings into improved health and quality of life of those afflicted, the panel recommended that the NIH swiftly develop medical professional training programs and materials to facilitate the quick and accurate translation of findings into medical care. (Specific sub-recommendations in each of these areas can be reviewed here.)
We are hopeful that the meeting’s recommendations will be included in a 2013 federal research funding announcement, providing members of the medical-scientific community with the opportunity to apply for and receive grant support to advance the study of overlapping pain conditions.