There is hardly a week that goes by in large Internet support forums for people with IBS that a commenter doesn’t ask, “Why isn’t anyone looking into [any given aspect of IBS]?” or lament, “There should be research into IBS like other conditions!” Usually, such a conversation thread devolves into several other people with IBS piling on with their agreement while a few who are more knowledgeable on the subject attempt to share facts, perspective and links to the contrary. Sometimes these efforts are acknowledged as appreciated; often they seem to go by potential readers as if the information was never posted. Recently, the IBS Impact founder observed two separate threads in the same forum claiming erroneously that IBS is a diagnosis of exclusion in less than 24 hours, despite the fact that two people had attempted the first time to explain the international Rome criteria for diagnosis, which have been in existence in some form for over two decades. The current version is Rome III. (See page 889, C1) Just over two weeks ago, functional GI experts met to finalize Rome IV, which is due to be released in 2016.
There probably isn’t anyone who has been in the IBS community for a while, whether a person with IBS, involved family member, or professional who would not agree that more funding and more research are needed, so that the causes of IBS and the most effective treatment interventions are fully understood over time. It is also true that IBS generally does not have a high profile in terms of mainstream media publicity. As discussed previously on this blog on many occasions, a minority of those of us with IBS tend to talk or write about it in public. However, most expert IBS professionals do not tend to spend time reading or posting in IBS support forums. Instead, they are busy actually providing medical care to their patients, who statistically tend to be those of us with the most severe and complex cases, actually conducting their research, pursuing funding to continue such research, presenting their findings and networking with colleagues at professional conferences, educating less experienced health care professionals as part of routine teaching responsibilities at major academic medical centers, occasionally writing books, producing videos, commenting publicly in the media, or lobbying legislators. An increasing number of professionals representing different fields of relevance to IBS, such as gastroenterology, neurology, psychology and behavioral medicine, dietetics, and others are making themselves available to people with IBS through blogs of their own, a social media presence, and/or cutting edge resources like the University of North Carolina Expert Updates and past Patient Symposium. Peer support forums definitely have their uses, but depending on the members and moderators at any particular site and time, if one confines oneself to a single source of information, one may not be aware of the tremendous amount of research that has been devoted to IBS over the decades and continues globally today in numerous aspects of this complex puzzle.
Irritable bowel syndrome is the most common functional gastrointestinal and motility disorder. Many conditions in that category are statistically much rarer, but an IBS Impact member who has had IBS for several decades and is also a degreed professional in a scientific field estimates that there are about 1000 scientific journal articles per year published worldwide on IBS. A vast majority of them are readily available to anyone with an Internet connection, free of charge either in abstract or in full-text or both, through PubMed, a service of the National Library of Medicine, which is a subunit of the U.S. National Institutes of Health. Numerous clinical trials involving human subjects, both in the United States and 187 other countries around the globe are registered in a database at ClinicalTrials.gov, also a service of the National Institutes of Health. As of this writing, 440 recruiting, active, or recently completed or terminated trials are listed for IBS. As use of the database is not required, the list does not include any studies that may not have been submitted, or other basic laboratory or animal studies not involving human volunteers. Again, this information is publicly searchable on the Internet by anyone who chooses to seek it out. The International Foundation for Functional Gastrointestinal Disorders, which currently has professionals from 11 countries on its advisory board, reported less than two weeks ago through its grassroots arm, the Digestive Health Alliance, that in the fiscal year 2015 budget, two subunits of the National Institutes of Health that provide funding for functional gastrointestinal disorders like IBS have received overall increases, and the Department of Defense medical research budget, which also includes functional gastrointestinal disorders, has maintained the same funding level as fiscal 2014.
This blog often links interesting clinical trials or results or mentions various evidence-based resources in posts on other topics, but here is a selection of academic research centers in various nations that have done IBS research. Some have specific IBS or functional GI programs. Others conduct their research within the context of larger departments and disciplines like gastroenterology, neurology, psychology, psychiatry, behavioral medicine, chronic pain, pharmacology, etc. Still others have individual researchers, clinicians or faculty members who are interested in or are recognized by their professional peers for groundbreaking work related to IBS or functional gastrointestinal disorders in general. Many senior-level experts have lived and worked in more than one country or collaborated with colleagues in various nations over the course of their careers, while other researchers are students or promising junior faculty members. A handful of these entities are mentioned often on this blog. Many have not been highlighted previously. It would be impossible to show a complete list of every country, every facility, or every individual involved in IBS research and clinical care, but the intent is to illustrate, through some of the most easily accessible website or news links in English, that there are indeed highly experienced, dedicated professionals throughout the world working year after year on behalf of people with IBS
In the United States: The University of North Carolina Center for Functional GI and Motility Disorders, UCLA Center for Neurobiology of Stress, Cedars-Sinai GI Motility Program, Northwestern University Center for Psychosocial Research in GI, University of Michigan Functional Bowel Disorders Clinic, Mayo Clinic, Johns Hopkins University, State University of New York at Buffalo Behavioral Medicine Clinic, Boston Medical Center (Boston University), Beth Israel Deaconess Medical Center (Harvard University), Dartmouth-Hitchcock Medical Center (Dartmouth College), Vanderbilt University Pediatric Functional Gastrointestinal Disorders Program, Nationwide Children’s Hospital (Ohio State University), Houston Methodist Hospital (Weill Cornell Medical College, New York Presbyterian, Texas A&M and the University of Houston)
In the United Kingdom: University of Nottingham, University of Manchester, University of Sheffield, Royal Holloway University of London, University of Southampton, University of Oxford, London School of Medicine and Dentistry.
In New Zealand: University of Auckland
In Mexico: Universidad Nacional Autonoma de Mexico
In Uruguay: Universidad de la Republica
In Belgium: University Hospital, Leuven
In Bosnia-Herzegovina: Institute for Genetic Engineering
In Cyprus: University of Nicosia
In Finland: University of Helsinki
In Greece: University of Athens
In Malta: Mater Dei Hospital
In the Netherlands: Maastricht University
In Norway: Haukeland University Hospital
In Serbia:University of Belgrade
In Spain: Autonomous University of Barcelona
In Switzerland: Universitätsspital Zürich
In the Netherlands: Maastricht University
In Japan: Tohoku University
In China: Peking Union Medical College
In Singapore: National University of Singapore
While the frustrations of severe and/or unpredictable symptoms day after day certainly lead many of us to lament that progress is simply not moving fast enough, the fact is that there are many fine researchers who have been working hard, many for decades of their careers, in putting irritable bowel syndrome on the map as a serious field of study. Collectively, they have learned quite a lot that was not recognized about IBS fifty or even five years ago. They recognize that IBS is a massive global problem with potential physical, emotional, social, and financial impact on those of us affected, our families and friends, and society. They deserve our thanks, our support, our constructive feedback, and our publicity in the hope that they will have the means to continue to find answers and assistance for us in the years to come.