“Behind the Scenes at Rome Foundation IV” Video Humanizes Functional GI Experts

February 23, 2015

In December 2014, functional gastrointestinal disorder experts from many countries, including several who are sometimes mentioned on this blog, literally met in Rome, Italy to finalize the most recent revision to the Rome criteria. The Rome criteria are the international standard used to diagnose functional gastrointestinal disorders such as irritable bowel syndrome (IBS). Some version of the Rome criteria has been in existence for over two decades. Rome III is the current version. Rome IV, which these professionals were putting the final touches on developing two months ago, will now go through the usual process for publication in a gastroenterology journal and is expected to be released for use in 2016.

It not been made public yet just what changes and improvements have been made in the details of the criteria. However, earlier this month, in his February 2, 2015  Gut Feelings  blog post, “Behind the Scenes at Rome Foundation IV: Updating FGIDs Diagnostic Criteria,” Douglas Drossman, MD, MACG, who is founder and president of the Rome Foundation, founder and president of the Drossman Center for the Education and Practice of Biopsychosocial Care, co-founder and retired co-director of the University of North Carolina Center for Functional GI Disorders, along with many other pivotal roles in the development of the field over his 40+ year career, reflects on the meeting.  He also includes a video of a bit more than 7 minutes in length showing him and his colleagues in work sessions and meetings, interacting with each other more informally in hallways and in tours of the city of Rome, and speaking to the video camera about their impressions of the meeting and their hopes for their work on the criteria and on further functional GI research and treatment. The range of countries and research institutions they currently represent is vast, and their faces and voices are reminders that there were human beings working long and diligently through this complex process.

As IBS Impact has written previously on this blog, given relatively scant, simplistic coverage of IBS in the mainstream media and some online sources, many people with IBS who have not been exposed to or taken the opportunity to access high quality, state of the science sources, tend to believe  erroneously that “nobody’s doing any research on IBS.”  (See the December 28, 2014 post). If they are aware of the Rome criteria, these tend to be an abstraction ascribed to some faceless medical “system,” not something that, if properly put into practice, IBS experts like Dr. Drossman consistently state can adequately diagnose IBS and other functional GI disorders based on symptoms with an extremely high degree of accuracy.

This lack of awareness does not only extend to people with IBS and their families though. As also reported on this blog on October 9, 2011, and still largely true today, even almost a quarter century after Rome I, functional GI experts are still battling widespread misconceptions among their own medical colleagues– primary care physicians, general gastroenterologists and nurse practitioners in local communities–  who are statistically much more likely than the experts to believe that IBS is still considered a diagnosis of exclusion, arrived at only when extensive tests have ruled out every other possibility and doctors do not know what else to call it or much about current standards of treating it. Despite the Rome Foundation members’ best efforts, as well as those of IBS organizations and advocates, these outdated notions filter down to patients and families and the public, compounding and prolonging an issue that is already entrenched but is a very basic barrier to further progress.

The best way to counter that is consistent and widespread education and awareness, which readers of this blog know IBS Impact actively encourages. The Rome Foundation is real. The Rome criteria are real, and the dedicated members of the various Rome IV working groups are real, highly experienced clinicians and researchers in the field. Take a look at Dr. Drossman’s video and see just a glimpse of behind the scenes.

IBS Impact thanks all of the experts involved in Rome IV, who are constantly working to improve diagnosis, treatment, research and functional GI education for those of us who live with these conditions and the professionals who may provide care to us. With IBS, progress is rarely quick and dramatic, and it is easy for many to lose hope that the future may bring new understanding, new options and better quality of life. But watching even a short, edited video may very possibly allow some readers that hope and insight.

Registration for Food and Drug Administration May 2015 Public Meeting for IBS, GERD, Gastroparesis, Chronic Idiopathic Constipation Patients Now Open

February 8, 2015

In April 2013, the International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance, announced that the U.S. Food and Drug  Administration had chosen three functional gastrointestinal and motility disorders to be included in its  “patient focused initiative.” (See the May 1, 2013 blog post.) The FDA is responsible for the review, approval and regulation of medications in the U.S.  The entire initiative was scheduled to take place over five years and include 20 chronic medical conditions that, based on several factors  the FDA considered sufficiently serious to warrant increased attention and drug development. The three digestive disorders, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD) with regurgitation on proton pump inhibitors, and gastroparesis, were among the 16 diverse medical conditions in total that were selected during the first round. Another functional GI disorder, chronic idiopathic constipation (CIC) has since been added. The program involves public meetings and other means for the FDA to hear experiences from people affected by the selected conditions.

IFFGD/DHA has now announced that the FDA will hold one of these meetings on Monday May 11, 2015 from 1:00 pm to 5:00 pm Eastern time at the FDA campus in Silver Spring, MD. People with IBS, GERD that does not respond to standard treatments, gastroparesis and/or chronic idiopathic constipation (CIC) may now register to attend in person, attend through online webinar, or to submit comments online through the FDA comment docket. Registration will close on May 1. Further information can be found at the link below.

FDA May 11, 2015, Public Meeting on Functional GI Disorders Patient Focused Drug Development

Along with IFFGD/DHA, IBS Impact encourages people affected by the above conditions to consider participating in the public meeting or submitting comments, which is a unique opportunity to influence future FDA directions and policies regarding these disorders. It is hoped that the representation of four functional GI and motility disorders in the patient focused initiative will create other opportunities for our community and pave the way for many long-term, positive and systemic changes for us all.